tag:blogger.com,1999:blog-46196833500153955252024-03-13T19:06:52.031-07:00Sweet Matthew BurrWendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.comBlogger96125tag:blogger.com,1999:blog-4619683350015395525.post-78036141736960426202014-06-30T20:28:00.001-07:002014-07-01T06:31:22.295-07:00The Beginning of the EndTomorrow, Matthew will get his very last lumbar puncture. I long ago lost count of how many he's had. This is the first of the last things. The beginning of the end.<br />
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His treatment is almost done.<br />
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I decided it's time to work on tying up the loose ends on this blog. So, I'm going to start with an update.<br />
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Our sweet Matthew had a quite a year this year. This cold and flu season was rough. Last year, he was in preschool, and when he started to come home with a new cold every week, we pulled him out of school for the rest of the season. This year, it was Kindergarten. It wasn't the same. We couldn't just pull him out. Also, He got to a point during the summer before Kindergarten where it became clear that he couldn't be cooped up in the house anymore. We had to stop stressing out about every little bug he caught.<br />
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So, he went to daycare in the mornings and Kindergarten in the afternoons. He loved it. He enjoys feeling like a normal kid. He got pretty ticked off, actually, if he had to miss a day, so I would end up taking him to daycare whether I needed to or not. It gave me time to get homework done anyway. For summertime, we have him in daycare two days a week, simply for the social interaction.<br />
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There are many upsides. He's happy. That's the biggest one. His oncologist once told me we were saving his life so that he could live it, and I should let him do that. It's really beautiful to sit back and watch him live. He really appreciates it. He loves life. What a gift for a six year old to have!<br />
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The downsides of all that exposure, however, are sort of scary. He has a new cold every week. Sometimes two in a week. He missed about a third of Kindergarten and he was admitted to the hospital twice last school year. Prior to these admits, he hadn't been inpatient since two months after diagnosis, so that was pretty shocking. Also, his chemo regimen is like a yo-yo. On, off, on, off, 1/2, full, off, 1/2, and so on. He hasn't stayed on full chemo for more than two weeks since before the blood infection last summer. That scares me a little. What if we aren't suppressing his bone marrow enough? But often, we check his blood and he's neutropenic (dangerously low infection fighting white blood cells) or really close to it, so he must be suppressed.<br />
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Faith is taking the first step even if you can't see the whole staircase. His doctors know what they're doing, and they've saved lots of kids before him and will save lots after him. They told me to send him to school, and they're right. It's been good for him, as hard as it was to know he was at higher risk for so many germs there.<br />
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Matthew doesn't remember his life before his cancer. I realized this a few months ago, when talking with him about the end of his treatment. I told him that they'll take his port out just before he turns seven, and he was horrified. Why would anyone want to take his port out?? As far as he can remember, it's always been there. It opened a whole new can of worms, actually, because now he's afraid that when they cut him to get it out, he'll bleed to death. Our amazing child life therapist up at the clinic has been helping me talk with him more about this to help him wrap his mind around it.<br />
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Now that it's summer time, the exposure to germs has lessened, although he's been coughing now for like two months. We've been unable to identify the cause of the cough, and we've tried multiple allergy medications. It's starting to feel like one thing after another goes wrong with him, and I wonder if that's what late effects are like. Just a general lack of good health. I don't know, but I do know he's tired of it. Poor kid. But all things considered, we'll take some coughing, compared to where we began.<br />
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His doctor finished her entire residency. We were sad to see her go, and some of the other moms and I got together and made her this video:<br />
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<a href="http://youtu.be/OqGoOjB1dCM">http://youtu.be/OqGoOjB1dCM</a><br />
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And for your viewing pleasure, here are some pictures of the last year:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpcViXqw73jl9xZ5BFZgrAuEnrVDXYxBGOO0vWCpwazUBJbOofRoIchzRLgI3GiJZKYLa7hjC5zHEC1zpkuQvk9ldA_UyRyqEaT4_IcH6QzBhmzNvkf98aQK-pezoL0gtuz-BsbCe1B3o/s1600/Face+Painted.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpcViXqw73jl9xZ5BFZgrAuEnrVDXYxBGOO0vWCpwazUBJbOofRoIchzRLgI3GiJZKYLa7hjC5zHEC1zpkuQvk9ldA_UyRyqEaT4_IcH6QzBhmzNvkf98aQK-pezoL0gtuz-BsbCe1B3o/s1600/Face+Painted.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">CureSearch Walk</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg50ddlglJE9fKqJl6pJ-ga-lY53mp-T8Q4xHxsyG1DT0jWKEjTDV10P8CjnNpqyxbeysR-1WYqjZRAV9j2qQ_m-56aDqm_PTRgY2rUkjijL-kERnKmQMPWNdcJruk9YUYLOvl0H_W6zDo/s1600/43.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg50ddlglJE9fKqJl6pJ-ga-lY53mp-T8Q4xHxsyG1DT0jWKEjTDV10P8CjnNpqyxbeysR-1WYqjZRAV9j2qQ_m-56aDqm_PTRgY2rUkjijL-kERnKmQMPWNdcJruk9YUYLOvl0H_W6zDo/s1600/43.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunscreen</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPQtuiO8ChjbOcSH_fetSqP_28sTBHzOLORakv7W0GJJZdXWyGk5wsYzsPG6K7lPKIFhvadLnuieKr4qBY7KyfN46MS33SIO9sYB6ckwX4AlgJrtjPU7tEP458Ehpk8BGj2B9qHLhAn_8/s1600/58.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPQtuiO8ChjbOcSH_fetSqP_28sTBHzOLORakv7W0GJJZdXWyGk5wsYzsPG6K7lPKIFhvadLnuieKr4qBY7KyfN46MS33SIO9sYB6ckwX4AlgJrtjPU7tEP458Ehpk8BGj2B9qHLhAn_8/s1600/58.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With his oncologist, Dr. Jasmin Jensen</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_f3EpTFfjBGqiztNZv06X8ynd0oQXlxx-ZGOQrc5BwggR41XELu8NDPyMpMG_EFnaZG4PIFj9isugK5EzFRpOisfPYlqfG60OMQ-_xh6g-61eNgUS2k9Z8IcY90nJ-MdzeuEWjC5G0ts/s1600/59.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_f3EpTFfjBGqiztNZv06X8ynd0oQXlxx-ZGOQrc5BwggR41XELu8NDPyMpMG_EFnaZG4PIFj9isugK5EzFRpOisfPYlqfG60OMQ-_xh6g-61eNgUS2k9Z8IcY90nJ-MdzeuEWjC5G0ts/s1600/59.jpg" height="640" width="360" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Jensen's residency is over, and Matthew loves her, so he wanted to tell her goodbye. The message says, "From Matthew, Goodbye." and it has a picture of him with me, and his two doctors. He loves them. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvE86pzPc6ZM-DYiFiHZhitGg52It0kdxkYWAHSA95mxU3A3_8nlziVBEnoSDDrK4BlXOFhH3d8lgb-KVUhivYnV-IJTHwZvnLe3TM-B7IUGq5SpVA0JK5zwsoQuzlfRPf38K1fzVdxmE/s1600/Dirty+camping+face+close.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvE86pzPc6ZM-DYiFiHZhitGg52It0kdxkYWAHSA95mxU3A3_8nlziVBEnoSDDrK4BlXOFhH3d8lgb-KVUhivYnV-IJTHwZvnLe3TM-B7IUGq5SpVA0JK5zwsoQuzlfRPf38K1fzVdxmE/s1600/Dirty+camping+face+close.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dirty face and silly face after camp Hobe.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvQkaeLt2I9bxcyJG5atU0DYacdwKIL96o5HcdYG36gSu3vnx6ZqK6mfn7TrIxA_1ogVcXJ_YtekIcQ1rYPdHmnptlybY5f-qg06Bt4BYRr3NAYt847ug6TGkB9oMfiSnP1i0hSgROk80/s1600/Dirty+camping+face.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvQkaeLt2I9bxcyJG5atU0DYacdwKIL96o5HcdYG36gSu3vnx6ZqK6mfn7TrIxA_1ogVcXJ_YtekIcQ1rYPdHmnptlybY5f-qg06Bt4BYRr3NAYt847ug6TGkB9oMfiSnP1i0hSgROk80/s1600/Dirty+camping+face.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Closeup of the Camp Hobe dirty face.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV1AWxbfUkJTaHS0ALpT5o93rRCQx01LwPWenL19qhdQgpglOPrNDqiw16ZS7AzgCdKc5urVmZWDuBPEPGSr6WKkzXT0XK9DkynpFHngwBF52PVkKSVEfcoeTI4Rsr6LaP_NpbULAq2bo/s1600/Lost+tooth.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV1AWxbfUkJTaHS0ALpT5o93rRCQx01LwPWenL19qhdQgpglOPrNDqiw16ZS7AzgCdKc5urVmZWDuBPEPGSr6WKkzXT0XK9DkynpFHngwBF52PVkKSVEfcoeTI4Rsr6LaP_NpbULAq2bo/s1600/Lost+tooth.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First lost tooth.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmJy9mmrl4wMgm5LKLYCSDlmOHu-P3L4o2yV2YwHzZ3Yyfzi_43cqtPRSm6nhG_IEoTSq2-H6pFgZ8ozws3aD6HZy_FgdHw5cwukq_k_tj_oPVYvK80D8EIUhl6lejVsY1ytOYUtu-zDA/s1600/Sleepy+after+camping.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmJy9mmrl4wMgm5LKLYCSDlmOHu-P3L4o2yV2YwHzZ3Yyfzi_43cqtPRSm6nhG_IEoTSq2-H6pFgZ8ozws3aD6HZy_FgdHw5cwukq_k_tj_oPVYvK80D8EIUhl6lejVsY1ytOYUtu-zDA/s1600/Sleepy+after+camping.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Soooooo tired after camp!<br />
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<br />Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-90796217911664354952013-09-17T14:51:00.000-07:002013-09-17T15:47:02.769-07:00Blood InfectionTime to break radio silence.<br />
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Maintenance is a long, steady, exhausting run. I'm sure I've said this in the blog before, but it bears repeating: If the first 8 months were a sprint, now we're running a marathon. Slow and steady wins the race. The thing is, during maintenance, nothing much happens. It's just month after month after month of exactly the same thing. As a result, there's not much to write about.<br />
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There have been a few things that I thought maybe I should have blogged about, but nothing big. Matthew is lactose intolerant now, as a result of his cancer treatment. We don't know if his tolerance for lactose will return to normal after treatment or not. Only time will tell. He's had some mysterious headaches that freak me out to the enth degree. I got a little bit crazy for a couple of months, mostly around those headaches. You see, this is the time when he is most likely to relapse -- from now until about a year after he stops treatment -- so I am on a constant alert for symptoms. It's like being filled with adrenaline all the time. Eventually, it gets to you. Matthew's poor doctor had to talk me down after a couple of months into my crazy time. They check for these things regularly, and the headaches would get progressively worse if they were an indicator of something sinister, not come and go. I just needed someone to reason with me. I guess it just feels like we're in a constant state of waiting for the other shoe to drop -- as if enough shoes haven't dropped. Also, we're always adjusting Matthew's oral chemo dose a little bit at a time. He has a tendency to run high on ANC, and we're always trying to suppress it just a titch more. Well, a couple of months ago, we overdid it, and his counts tanked. The result was that he became neutropenic and got to spend a few weeks confined indoors. He did not like that. I asked friends on Facebook to send cards, and he got "Christmas in the Mailbox" every day for about a week. People are amazing. He bounced right back from that, and went right back to his normal dose (without the upgrade we had tried to take) of oral chemo.<br />
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Matthew has this thing about him. He manages to get awful maladies, but then he is hardly affected by them. It's so strange. You would never look at him and know what he's going through or what he's gone through.<br />
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Well, another shoe dropped this week, and in true Matthew style, it's not as bad as I've always imagined it could be. I actually think it's not as bad as the doctors and nurses imagined it should have been. I say that because two different times, they acted very urgently about his well-being, and then they saw him, and they all sort of mellowed out. Quickly. Like someone had let the air out of a balloon.<br />
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I'm just going to tell the whole story, because I put little bits and pieces on Facebook, and I think I left some people confused.<br />
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Last Sunday (9 days ago, now), Matthew complained of a sore throat. He said it hurt him a lot to swallow. I'm far enough in nursing school to know that I should look, but not far enough to know what to do if I spot weird things. So I looked, and spotted something weird, and had no idea what to do. He had these red polka-dot like spots on the roof of his mouth, at the back, near his throat. The next day, he had a headache, runny nose, and a cough. I gave him benadryl to dry out his sinuses and sent him to school. That evening, he had a fever of 101.7, so I took him to the ER. The rule is that if the fever is above 101, we go to the ER. Even if it's just from a little cold. If I understand correctly, the reason is because he has a port, and a blood infection at the site of his port is too close to his heart for comfort. They have to be treated immediately.<br />
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So, for his little cold, we went to the ER. They gave him IV antibiotics (Rocephin), a bag of fluid, and checked his ANC. It was 2000, so we were clear to go home. But they ran a strep culture (rapid test was negative), a nose culture, and a blood culture. This is all standard every time he goes to the ER, right down to the same meds.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkIAJm7Piqp_-I1KCExIYRnjn_WC7FDrOxzwkjBIf39XJLI3qtPqR5sB5Hp2Baz5aDHbQ4AlEqzAzgucU0Ed0XBRHn8X2mqr3SPMNYzp_Bayt1dn_HTwtlEMvDWWr8o9FjV9EXg74ZcQs/s1600/Fever.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkIAJm7Piqp_-I1KCExIYRnjn_WC7FDrOxzwkjBIf39XJLI3qtPqR5sB5Hp2Baz5aDHbQ4AlEqzAzgucU0Ed0XBRHn8X2mqr3SPMNYzp_Bayt1dn_HTwtlEMvDWWr8o9FjV9EXg74ZcQs/s320/Fever.jpg" width="180" /></a></div>
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Tuesday, his fever was still above 100, so I kept him home from school. I called the clinic, and his nose culture had come back. Rhino virus and entero virus (which I found out later always come back together. It just means rhino virus. ... weird.) Matthew had the common cold.<br />
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Wednesday, his fever was gone, so I sent him to school. This had been enough trouble already for a cold. It was a totally normal day. He went and played at a friend's house after school and everything. Then, we put him to bed, and when I was getting ready for bed, I noticed a message on the answering machine. It was the ER. There was a concern about his blood culture. I should call them back. The message was from 4pm, but I didn't see it until about 10:30. I called them, and they said something had grown in his blood. We needed to come back to the ER. I asked should I wake him up or come in the morning? They said wake him up and come now. When we got there, they were urgent. Therefore, I worried. They didn't want to give him anything to eat or drink. I thought maybe his port was infected -- something that is always a worry in the back of my mind, because his port is right next to his heart. If that was the case, they would surgically remove it. In the beginning of his illness, I got the impression that we'd be lucky if we made it to the end with just one port, so I've been braced for it all along.<br />
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I'm going to interrupt here and say this. Blood infection is one of the things a cancer parent fears the most. Believe it or not, it can be even scarier than relapse. When we talk about kids dying because of their treatment, rather than the cancer, it's usually because of blood infection. They can cause sepsis, meningitis, or blood clots resulting in stroke or pulmonary emboli. If a kid in cancer treatment dies suddenly, it's likely that they had a blood infection. And just like you never think your own kid will be the one who gets cancer, once you're in that club, you think your kid will never get a blood infection. It's shocking when the ER staff tells you by phone to come now, even though it's the middle of the night, because there's something in his blood culture. Shocking and scary.<br />
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So, we went back up to the ER, they were urgent, and I was worried and scared. They put us right back into a room. No triage. Weird. And they gave him IV antibiotics again (Rocephin) and fluids. They took more blood for a new blood culture, and the doctor came and talked to me. She said that although they didn't know what it was yet, it was a gram negative bacilli. Basically, that just tells them how it responds to a certain die, and the shape of the bacteria. Sort of to help them classify it. She said that since Matthew didn't have any symptoms (even his cold symptoms were mostly resolved), we could go home, but we needed to follow up with oncology first thing in the morning. Strange, after all that build up. I took him home to stew over it there.<br />
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Thursday, I called oncology. At first, the phone call was very routine, but then I said they had found a gram negative bacilli in Matthew's blood, and the urgency set in. Again, that pit settled in my stomach. They wanted us to come up that day to meet with an infectious diseases doctor. We should pack a bag for an admit. Holy moly.<br />
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We got there, and they didn't want Matthew to eat. There was talk of scans. What were they scanning for, Justin asked. Oh, the doctor will come explain. It was overwhelming and new, sort of like when he first got sick The infectious diseases doctor (somehow, that's even scarier than oncologist) came in and explained that the bacteria in Matthew's blood is a very slow growing bacteria, so they still aren't sure what it is. They think it's a bacteria called fusobacterium. This is a normal bacteria that lives in all of our mouths. The sores at the back of Matthew's mouth on Sunday, combined with his immune compromised status, most likely allowed this bacteria to cross over into Matthew's blood stream. This is what the doctors have always warned us about. He couldn't even fight off the bacteria that lived in his own body. He couldn't fight them off, even with an ANC of 2000. That was a surprise to me, and I have spent 2 years educating myself as much as I can about these things.<br />
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Fusobacteria, once in the blood, is notorious for causing blood clots in the jugular or pulmonary emboli. If there's a blood clot in the jugular, it can "throw off" into the brain and cause a stroke. The scans the nurse had mentioned were CT scans to check for clots in the neck and lungs. This would determine our course of action. We were most likely looking at a 2-6 week admit.<br />
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Holy. Moly.<br />
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So, we went down and did the scans. Aaaand ... nothin. There was nothing on the scans. Totally clean. And since he still showed no symptoms related to this ailment, they decided that it would be okay for us to take him home, provided that we have home healthcare come to our house and teach us how to administer IV antibiotics.<br />
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Our fabulous nurse found us a home health company that was different than the last one we had out here (because they were not wonderful), and set it all up, and we were on our way. On the way home, I got a call from the home health care company, saying that they don't have nurses where we live, so they had to outsource. You guessed it ... to the sucky place we were trying to avoid. Sigh. So, then, they went on to tell me that they would be out first thing in the morning. Well, that wasn't okay, because he had a dose of antibiotics due at midnight. But I was told ... and I quote ... "Nursing doesn't happen in the middle of the night."<br />
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Uhhhh okay. We'll see you in the morning then. I guess.<br />
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And then I called the oncologist on call. I was 12 minutes late to reach someone at the clinic. They had just barely closed. The on call doctor said it was not okay to wait until morning, so she called the home health company back. There was a lot of back and forth, during which she said to pack up and come back, because we were being admitted until morning, but then the home health company miraculously figured out how to make nursing happen in the middle of the night.<br />
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If my writing is not thick with sarcasm, you should insert it above. I seriously do anything to avoid relying on home health care, because we have rarely had a good experience.<br />
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But, we got a huge delivery at about 9pm, and then as scheduled, we got a nurse at 11pm, who taught me how to prepare and administer Matthew's IV antibiotics. He was nice, too, and knew what he was talking about. Bonus. Then in the morning, another nurse came to observe me preparing and administering the antibiotics, to be sure I had it right. I did, and they said I was good to do it on my own.<br />
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Since then, we've been giving Matthew meropenem every 8 hours by IV. Justin learned how to do it, and we're working together so he can still work and I can still go to school. They gave us the okay today to send Matthew back to school tomorrow. His port will be accessed, but we'll just give the antibiotic in the morning and evening, and a dose in the middle of the night.<br />
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He did knock the port needle loose once, which he often does when he has to stay accessed for a long time. When Justin tried to flush it in the morning, he said it hurt, so we called the home health company. They sent us a nurse (who we recognized from before), and he tried to access the port, unsuccessfully. This guy bugs me a lot. He does things that I know he's not supposed to do, and he tries to access Matthew's port, when it's obvious that he doesn't know how, and every time, he claims that the port must be broken. So, we had to go up to primary's to have a nurse access him. Of course, the port is fine.<br />
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That makes 4 trips to the hospital and 3 visits from home health in a week. It's been crazy! But at least we're sleeping in our own beds.<br />
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Here's what we can expect. Thursday, the infectious diseases doctor said they were sending the blood samples to ARUP (a blood lab) for testing. She hoped we would know more by Monday (yesterday). What we have so far is that they still think it's fusobacterium in the first sample (from Monday in the ER), and that nothing has grown in Wednesday or Thursday's samples. This is good news all around. They're testing the infected sample for sensitivity to different drugs, in hopes of changing from meropenem every 8 hours to rocephin every 24 hours, but as of this afternoon, we didn't have results for the sensitivity tests. They said he can go to school tomorrow, as long as it doesn't interfere with his med schedule.<br />
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We should get more info tomorrow, but then again, maybe not. We'll see.<br />
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Thanks for the support and prayers! Blood infections can be so scary! But this is okay. We're stressed, but it's okay. Mostly we're really tired.<br />
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Captain Crunch and meropenem. The breakfast of champions.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com1tag:blogger.com,1999:blog-4619683350015395525.post-44115358392324233532013-03-01T10:26:00.002-08:002013-03-01T11:02:04.096-08:00Donna Day<h3>
My Tribute to Donna, Cancer Moms, and Too Many Children Who Have Died</h3>
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This post will really be out of the norm for Matthew's blog. Typically, his blog has been more of a journal to keep family and friends updated on his health, but this entry is for a cause. Before I get into it, I will update Matthew's health.<br />
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He is doing well. Maintenance is sort of like a marathon. It just goes on and on. His treatment has been so long now, I barely remember what it was like to take care of him before. I am actually afraid of what it will be like to be discharged from oncology, because I don't feel like a regular pediatrician will have enough expertise to take proper care of him.<br />
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At first, Matthew's treatment was like a sprint. It was really hard work. All the time. We were breathless and exhausted. Like the rabbit - hurrying to win the race, but too tired to reach the finish line. Now, we have slowed down to a steady jog, and worked some of our old life back in. Like the tortoise - slow and steady wins the race.<br />
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We give him chemo in the form of pills every day, with a handful of extra pills on Thursdays. In order to ensure he gets them on an empty stomach with no dairy products for 2 hours before or after, we wake him up at 11, before we go to bed. He can sit up and take up to 14 pills in his sleep. He goes in for a check up with his oncologist once a month, during which he gets an intravenous dose of a chemo called Vincristine, and for the 5 days following that, he takes high doses of steroids to maximize the effectiveness of the Vincristine. Once every 3 months, during his monthly checkup, he also gets sedated for a lumbar puncture (spinal tap) and they administer Methotrexate, another chemotherapy, into his spinal fluid, so that his brain will receive it. All of these things work like clockwork, and have been happening for almost a year, now. They will continue until September of 2014. There are side effects, but most of them are relatively minor. Sometimes, they're upsetting for a mother to watch, but when put into perspective, I can be patient and remember that there is an end date in sight. This isn't forever. So far, it doesn't seem to have caused any damage that won't eventually heal. Matthew is truly one of the lucky ones.<br />
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Now. Let's talk about Donna. Donna was a beautiful little girl who died of a brain tumor called Papillary Meningioma in 2009. Last night, I talked about her mom, who blogs under the name Mary Tyler Mom, on my Facebook page. Here's some of what I said:<br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">In 2010, she wrote Donna's cancer story for her 120 Facebook friends. 1 post a day, spanning the month of September, and spilling into October, each chronicling a month of Donna's life from her diagnosis to her death. </span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">In 2011, she published Donna's story on her Mary Tyler Mom blog. This is when I discovered her, trying to make sense of what was happening to my family. </span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">In 2012, Huffington post picked up the serial, giving Donna's story a massive, national audience. Now, her Facebook page, alone, has more than 11,000 followers.</span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">I'm honored to say that Mary Tyler Mom has asked me to participate in some writing projects with her. I won't give away the projects she's planning, but I do want to talk about tomorrow. </span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">Tomorrow is Donna Day. Many bloggers are coming together to write their stories about how their lives have been affected by childhood cancer.</span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;" />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 17.99715805053711px;">If you'd like to read Donna's Cancer Story the link is below. </span><br />
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<a href="http://www.chicagonow.com/mary-tyler-mom/donnas-cancer-story-2/">Donna's Cancer Story.</a><br />
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I said last night that it's hard, but worth it. I wasn't kidding. It gave me hope during some of the darkest days in my life. If I could read it, knowing the whole time that Donna would die in the end, just 2 short months after my 3 year old child was diagnosed with cancer, and feel uplifted, I promise you can too. It will be worth your time. Sometimes, people told me I needed to lay off the blogs, for my own good. Sometimes, people really worried about me. But it was like lancing a wound. There is truth here.<br />
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This story tells the truth.<br />
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That is what I admire so much about Mary Tyler Mom. We don't always see eye to eye, but I admire her so much because she always tells her truth. She doesn't sugar coat it. She is so brave.<br />
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I'm going to switch gears now, and talk for a minute about my cancer mom friends. If you know me very well at all, you've probably heard me talk about them, but we keep our group pretty private. I've talked with them, and received permission to write about them. We want to share a message of hope as well.<br />
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Our group started with one mom. Her son, who was barely more than a baby, was diagnosed with cancer, and she kept hearing from people that so-and-so's neighbor's daughter had cancer, or so-and-so's nephew had cancer. She talked with a few of them, or emailed with them, and eventually they connected on Facebook. They started arranging cancer mom dinners and playdates for the kids. When your child is immune compromised and can't be around other kids, it can be so lonely! But what about other immune compromised kids? Playdates with them feel a lot safer. Their parents KNOW the rules. They live the rules.<br />
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This mom started meeting more moms, and they started meeting more moms, and I'm sure you can see where that led. Our group, The <a href="http://utahcancerfightingcuties.blogspot.com/">Utah Moms with Cancer Fighting Cuties</a>, now has more than 205 members on Facebook. We meet regularly for dinner, we have playdates in the summer, and maybe the best thing is that lately, we raise money for childhood cancer research. Like Mary Tyler Mom, what started small has grown exponentially into something no one ever expected, and we are making a difference.<br />
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Our charity of choice is CureSearch, but, at least in my mind, it is a close toss-up between them and St. Baldrick's. We have a lot of moms who have and still do participate in St. Baldrick's events as well. If I ever ask you for research money, it will most likely be for one of those two.<br />
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The cancer moms have helped me in so many ways through this journey. When I'm scared, I go to them, when I'm excited, I go to them, when I'm confused, I go to them. They inspire me and uplift me, and make me feel human and normal when I often feel separate and labeled by the rest of the world. In the 21 months since Matthew's cancer diagnosis, a lot of moms have begun and finished treatment for their kids (most protocols are more like 6-8 months long). I have seen many families endure bone marrow transplant, and radiation therapy, which are both particularly brutal, and too many children have died.<br />
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Our Facebook page is a living, breathing entity. We have a collective mood and we support each other fully. When there is news of a relapse, there is silence, with the exception of that one thread, typically for several days. When a child dies, we all mourn, even if we never met the child or the mom except on Facebook. When someone is waiting for news after a scan or a test, we hold our collective breath until there is an answer. Good or bad, we deal with the news together. Normal social boundaries are not the same among us. In Utah, there are typically a lot of social dividers based on things like religion and where a person lives, among other things, but those things are left at the door in our moms' group. We transcend that. We all have something to bring to the table, and we talk freely - no holds barred.<br />
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There are blood drives and fundraisers and so many positive messages shared. But the best thing we do is our CureSearch walk. In 2011, 8 moms came together, and rallied 40 more. These moms each formed teams. These teams each walked in honor of a child who is facing or has been faced with cancer. Some teams honored multiple kids. They did this mostly on their own. CureSearch does not have a lot of overhead, which translates to very little help from them, compared with other similar charities, but also translates to almost all of the donated funds being used for the intended purpose. In this case, it's for childhood cancer research. The goal that first year was $50,000, and the Salt Lake City walk raised $72,000.<br />
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In 2012, those 8 moms and 83 teams set a goal to raise $90,000 and raised $170,000, 100% of which was donated straight to the Children's Oncology Group for research - Curesearch didn't keep any of it. That day was filled with so much joy! This year the goal is 90 teams and $190,000.<br />
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I am proud to call these women my friends. It's important to understand something here. We don't do this to improve treatment for our children. Our children already have cancer. Their treatment course has already been decided, and research isn't going to change that, unless a miracle, overnight cure is somehow found tomorrow. We all know that's not what we're aiming for. We want better treatment for the next group of kids.<br />
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Matthew shouldn't have to endure 3 years and 2 months of chemotherapy. By the time he's done, it will have been nearly half of his life. I have constant fear of relapse, secondary cancer and late effects. Even if they cure his cancer, he may suffer for the rest of his life because of what we had to put him through to accomplish that.<br />
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My friends shouldn't be watching their kids go through cognitive, speech, or developmental delays because of the chemotherapy. People should not have to sell all of their Earthly belongings and move their families to another state in search of treatment, living in a halfway house, a Ronald McDonald House, a hotel, a camp trailer or a tiny apartment with no heat.<br />
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Donna shouldn't have died. My friends shouldn't be burying their babies and trying to make sense of it.<br />
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Okay, so now what? I can wallow if I want to. Everyone would understand. Mary Tyler Mom could certainly have wallowed. But what good would that really do? It doesn't change anything. Donna died, and nothing is going to change that. Matthew has cancer, and nothing is going to change that, either. I can either wallow and become bitter, or I can act on it and use it to become better. I want to be a better person. The reason I'm writing about all of these women is that I am inspired by them all to be a better person!<br />
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We don't raise money for our kids. It's imperative that you understand that. Our kids are the reason we raise money, that much is true, but that money will not help our kids. You know who helped our kids? The people who did this after their kids got sick. The people whose kids died during a time when <b>no one</b> lived through childhood cancer. That's how this works. If Matthew had been born back when I was, he would have had roughly a 10% chance of survival. His doctor recently told me that's because he would only have gone through induction therapy - that's 28 days.<br />
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So, no, we aren't doing this for our kids. We are doing it for <b>yours</b>. Or maybe your sister's. Or your next door neighbors. Or your grandchildren. We are doing it for the 1 in 300 boys, or 1 in 333 girls who will be diagnosed with cancer before they turn 20. We hope that when it happens to them, they will have better options than our children did.<br />
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Now, the point of this entry today, the cause I mentioned at the start, was Donna Day. See, Mary Tyler Mom's version of the Curesearch walk I described above is an annual head shaving event for St. Baldrick's. I'm going to share with you some of her words about it:<br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago. It is our second event. Last year's started with a goal of $20K and we raised $79K! This year we have many fewer heads to shave and have set a goal of $30K. Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us. WOW! <br /></span><a href="http://www.stbaldricks.org/events/mypage/6969/2013" target="_blank">This is a link to their team page.</a> To donate to the team, use the GREEN donate button. Any amount helps. Seriously. Anything. If you have a dollar to spare, it helps. If you have ten, that's fantastic. As I type this, their team has reached just over 41% of their goal. Just like Matthew's 1 1/2 pills a night and 14 on Thursdays, slow and steady wins the race. This is how we will improve childhood cancer treatment for the children of the future. St. Baldrick's funds more pediatric cancer research than anyone in our country, other than the U.S. Government.<br />
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They are still happy to take on shavees, too. If you're up for it, volunteer to shave your head. I hear it's the experience of a lifetime! There's still plenty of time. You would commit to shaving your head and ask people to donate to you for it. You'd have 30 more days to raise as much money as possible for the honor.<br />
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I will close with a quote that often comes to mind when I think of the cancer moms, and the community that has rallied around Mary Tyler Mom.<br />
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"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."<br />
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~Margaret Mead<br />
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Perhaps a combination of some small groups of thoughtful committed citizens like ours will fund the brilliant ideas that will cure DIPG, Papillary Meningioma, Leukemia, Osteosarcoma, Wilm's Tumor, Neuroblastoma, and the rest of the childhood cancers, so that our children can look back on this day and age and think of childhood cancer in the same way that I think of Polio - as something awful that used to happen to kids. </div>
Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com3tag:blogger.com,1999:blog-4619683350015395525.post-20149128837470724702013-01-20T17:51:00.001-08:002013-01-20T17:51:33.052-08:00The StormA friend of mine asked the cancer moms for notes to send to someone she knows whose child was recently diagnosed with the same cancer as Matthew. I put my note together, and then decided that this is something I'd like to have on my blog. Maybe a stranger will stumble across it in a time of need, or maybe it will just be good to remember later in life that this was how I felt now. Either way, I really liked the way it turned out, so without further ado:<br />
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<i><span data-ft="{"tn":"K"}" id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[0]">Dear
family, I know that I'm a stranger, and it may be strange to receive
such personal words from me, but I'm writing them anyway, in hopes that
they will help you.</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[1]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[2]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[3]">My
son, Matthew, was diagnosed with Pre-B ALL at the age of 3 1/2. He's 5
now, and we're still plugging away at treatment. At first, things were
really hard, and I won't lie, they still sometimes are. But just like in
weight training, when you do hard things, they get less hard. Trust me
on this: you can do hard things. </span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[4]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[5]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[6]">People
will tell you you're strong, and that might feel frustrating because
you'll feel tired and worn down. Just bear in mind, you're doing what
any loving parents would do, given your set of circumstances. People
will admire you for doing it, and that's okay. They could never
understand, unless they had been here themselves, so try and remember
that those comments usually come from a place of respect for you, even
if you feel like they are misguided.</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[7]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[8]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[9]">I
have a good friend who went through treatment for Ovarian Cancer at the
same time as Matthew's heaviest treatments. One day, she told me that
she just wanted to be done so that her life could go back to normal. The
thing is, it never will. Everything changes, even after treatment. You
will view the world through different eyes. My friend didn't like
hearing that at the time, but later said that it helped her to look
forward with faith that she would be able to make something special out
of her life as a survivor. A cancer survivor is defined as anyone living
past their diagnosis, so your daughter already is one. Cling to that.
She is a survivor and a fighter. I'll never forget the first time
someone called my son a survivor. It's a powerful word.</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[10]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[11]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[12]">I
want to end with this. One of my favorite quotes talks about a storm. I
view cancer as a storm, and I wholeheartedly believe it has something
to teach us. Through the trials we endure during this time, we will
emerge as stronger, more courageous people. And at some point, after the
storm ends, we will find a place of peace and calm.</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[13]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[14]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[15]">"And
once the storm is over you won't remember how you made it through, how
you managed to survive. You won't even be sure, in fact, whether the
storm is really over. But one thing is certain. When you come out of the
storm you won't be the same person who walked in. That's what this
storm's all about.”</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[16]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[17]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[18]">― Haruki Murakami, Kafka on the Shore </span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[19]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[20]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[21]">Even
though you don't know me, please know that my heart goes out to you.
This year will be hard, but every day, your family will grow stronger.</span><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[22]" /><br id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[23]" /><span id=".reactRoot[29].[1][2][1]{comment446223502097887_446247258762178}.0.[1].0.[1].0.[0].[0][2].0.[24]">~Wendy Burr. Mother of Matthew Burr - cancer survivor, and warrior.</span></span></span> </i>Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com4tag:blogger.com,1999:blog-4619683350015395525.post-5893910540876888782013-01-14T18:08:00.000-08:002013-01-14T18:08:00.143-08:00Half Way ThereTomorrow, Matthew will go in for his monthly oncology appointment, and it's really just a standard monthly visit with IV chemo. But tomorrow is sort of a milestone, because it marks his halfway point in treatment. He has been in treatment now for 19 months, and he will be in treatment for 19 more. <br />
<br />
If that sounds like a lot, that's because it is. From my experience, most cancer treatment protocols are complete in 8-10 months. Matthew's treatment will consist of a total of 6 phases of treatment, the first 5 of which did, actually, fall within that time frame, and the last one is called Maintenance. So, it's similar, but the Maintenance has turned out to be a bigger deal than I thought it would be. He gets chemo every day. He hasn't had a break from it since Spring. That's unusual, because most cancer treatment protocols call for a break every month or so. The constant poison is protecting him from relapse, yet is slowly damaging parts of his body in ways that I'm not sure he'll ever really recover from. Only time will tell. It's really hard to give him medicine that hurts him like that and have no choice but to keep giving it.<br />
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I've seen a lot of families go through diagnosis, treatment, and ring the bell - an emotionally charged ceremony indicating that you are done with treatment. I love those families, and I am so happy that they are moving on with their lives. <br />
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I've also seen too many families lose the fight. It makes me sad and angry. I hate cancer so much. I hate watching my friends take their babies home to die. I hate imagining what it would take to make peace with that. And every time, my resolve to act is heightened.<br />
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19 months has really changed our family! Really, everything has changed since that awful day. We've had the lion's share of trials heaped on top of the cancer trial, but we're stronger and learning from it all every day. I wonder what on Earth we'll be like in 19 more months!<br />
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In that time, I expect to see a few more waves of families come and go through my cancer group. The girls who have been in treatment with Matthew all along will finish up this summer. New moms will come, treat their kids and go. More relapses and losses will take place. Hopefully, 19 months will be the end of it for Matthew. Hopefully, he will be able to move on with his life and have a normal childhood, free from the heavy worries he has now. <br />
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As for me, I will be a cancer mom for life. I am forever changed. In the beginning, I used to say I could either let it make me better or bitter, and that's still true. Some bits of it still make me feel bitter, and I'll have to continue working to get rid of those feelings, but some parts of it have made me a better person.One thing is for sure, I am now an advocate. <br />
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Thank you for supporting us through the last 19 months. I have started thinking of the first year as our "No good, very bad, terrible, horrible year." Mister Rogers said his mom told him to always look for the helpers during the hard times. She was right. There have been angels with us all along the way, both visible and not. I am grateful to all of them. To all of you.<br />
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Let's hope that the next couple of years can be the "Peaceful, joyful, happy time, having fun years."Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-54038155774773302102013-01-14T17:05:00.001-08:002013-01-14T17:05:06.223-08:00Florida, Part 2<br />
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They say better late than never, right? Well this is really late, but here we go anyway.<br /><br />I've been reminiscing all morning about our trip, and decided it was time to finish the monumental task of blogging about it. The hardest part is pictures! I can write all day long, but we need some good pictures.<br />
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In order to help my memory, I went back through my Facebook posts from July. I wanted to be sure I hate the days correct. Our trip went from Monday, July 9th through Sunday, July 15th.<br />
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I already blogged about Monday. That was in Florida, Part 1. The whole day consisted of travel, and getting from Utah to Florida was quite an adventure for us! I'm glad I wrote about it when it was still so fresh on my mind. The parks were awfully memorable in their own rite, and I think I'll get it all down okay. It's fun to remember back on it.<br />
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It was truly the trip of a lifetime. The thing about that trip is that Make-A-Wish, combined with Give Kids The World and all the parks involved, made sure that we wouldn't have to spend a penny of our own money if we didn't want to. They fed us, housed us, gave us a vehicle and gas money, they even gave us souvenir money. That could sound so frivolous, but when ALL of your money goes to bills, living expenses and medical expenses, eating out and buying fun things is really hard to allow yourself to do. A lot of people wouldn't be able to go on these trips if they weren't truly all expense paid. What it did for us was priceless. It gave us one full week without worry. We didn't worry about cancer, money, appointments... we just did what we wanted to, when we wanted to, and we didn't have to worry about consequences. If you ever wonder what good a trip will do for a family going through a medical crisis, that is it, in a nutshell, for me at least. By sending them on these trips, Make-A-Wish is removing worry from their bitter cup for one whole, beautiful week. A lot of wounds can heal in that much time.<br />
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But I digress. Let's talk about the parks! First, I'll explain what passes we had. <br /><br />
<ul>
<li>Disney World: There was a 3 day park hopper pass for Disney World. This gave us 3 days to visit 4 Disney Parks: </li>
</ul>
<ol>
<li>The Magic Kingdom (this is what you picture, when you think of Disney World, with Mickey's Castle, the parade, the fireworks, the Small World and Teacup rides.... etc), </li>
<li>Epcot (focuses on technology and culture - this is the park with the giant golf ball at the front.)</li>
<li>Disney's Hollywood Studios (this is about live shows and virtual rides)</li>
<li>Animal Kingdom (basically a great, big zoo with rides)</li>
</ol>
<ul>
<li>Universal Studios: There was a 2 day pass for Universal Studios, which consists of two parks, accessed by the same main entrance:</li>
</ul>
<ol>
<li>Universal Studios (this park is exciting - full of huge roller coasters, and universal characters, like Spider Man)</li>
<li>Islands of Adventure (this is made up of five "islands" which are themed sections of the park. One of them - and obviously the most important, if you ask me!!! - is the Wizarding World of Harry Potter)</li>
</ol>
<ul>
<li>Sea World: There was a 1 day pass for Sea World, which is mostly shows, with a few rides.</li>
</ul>
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What that comes to is 7 parks in 7 days, plus the time you need for traveling to and fro. It was BUSY! But so wonderful and fun.<br />
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Day 1: Monday - it was all travel and rest time.<br />
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Day 2: Magic Kingdom. <br /><br />I went to orientation, where they explained to us how we would go about using all of the passes they were providing us with. Then we started big - with Disney's Magic Kingdom.<br />
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That was such a fun day! That park is made up of all these zones. When you first walk in, you're on Main street, which is all shops and restaurants, and at the end of the street, in all it's glory, is Mickey's Castle. There was a parade going on right as we walked in, and it started the mood off just right! I have an awesome video of it, but I cannot, for the life of me, get it to load. I may figure that out at a later date.<br />
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Anyway, after the parade, we walked straight toward Mickey's Castle, which is a great way to start things off. It really gets you into the feeling of the magic of that place.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDZ36rkgaVGndYdql2svKR6W0VfoVmETvgR7XaJ0p4MTFQqFU4fkrfB0q-GROoUbxh_eKqWrmelcXM_ZNxNdFgOYW3SccICBHce3wggWU69FMcD4-EMw1YUkK70PlC578M_8JTfoJDw8/s1600/GEDC0317.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDZ36rkgaVGndYdql2svKR6W0VfoVmETvgR7XaJ0p4MTFQqFU4fkrfB0q-GROoUbxh_eKqWrmelcXM_ZNxNdFgOYW3SccICBHce3wggWU69FMcD4-EMw1YUkK70PlC578M_8JTfoJDw8/s320/GEDC0317.JPG" width="320" /></a></div>
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After that, the park is sort of divided into "zones" for lack of a better word. There are, Tomorrowland, Mickey's Toontown Fair, Fantasyland, Liberty Square, Frontierland, and Adventureland.<br />
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We had a Give Kids The World button and a special pass on a lanyard, which allowed us to skip the lines. We either went in through the fast pass lane, or the handicap entrance. Because of this, we were able to quickly work our way from one ride to the next. We went without any rhyme or reason from one thing to the next, but we got tired really fast, and realized we were being rather inefficient. So, we got a map and found the attractions we wanted to see, and went to each one we liked in each zone until we were done.<br />
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Without that magic button, it would have taken up all 3 days of our park hopper pass just to do Magic Kingdom. It is BIG! But we did it in one day, and we went on every, single ride we wanted to go on. We ate lunch on Main street, and we relaxed in a VIP lounge that only Wish Kids and their families have access to. We wanted to stay for the fireworks, but in the end, we were all WAY too tired! We left half an hour before the fireworks were scheduled to begin. Oh well. Maybe next time.<br />
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Here are some highlights from Magic Kingdom:<br />
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Can you believe they cut the bushes to look like characters?? <br />
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Stained Glass in the Aladdin-themed VIP Lounge.<br />
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The beautifully framed art in the lounge comes from the movie.<br />
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It's a Small World. Look at the wonder on his face.<br />
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Track cars. Allison was having a good time. Matthew hit his face on the steering wheel when his car (with Dad) stopped too fast. He remembers that bonk pretty vividly.<br />
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Day 3: Disney's Hollywood Studios<br />
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Sadly, we tried to enjoy this park, but the rain, combined with nearby lightening was shutting down all the shows. We went to one, or maybe two, and then they shut a show down right in the middle of it. We went to the car to wait it out, or decide what to do, but it was torrential rain. So we went back to the villa and enjoyed Give Kids the World for the day, instead. We were all pretty disappointed - Justin most of all. <br /><br /><span id="goog_967393564"></span><span id="goog_967393565"></span> <br />
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I posted this on Facebook that day and captioned it with a single word. "Lame."<br />
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Day 4: Epcot Center and Animal Kingdom<br />
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Armed with 6 umbrellas, we decided to finish off our 3 day park hopper passes this day. Epcot and Animal Kingdom are both pretty easily half-day attractions.<br />
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We started with Animal Kingdom. By now, we had our method down. We got our map, plotted out the whole park, picked the attractions we wanted, zipped to them, and moved on. In all, Animal Kingdom only took us a few hours. It was kind of like a huge zoo with a few rides and a roller coaster or two. Generally, for big roller coasters, Matthew and I sat them out, and Justin went with the big kids. My vision was still a mess at this point, and my balance was questionable, so I opted out of most of the rides that would mess with those senses.<br />
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I think Animal Kingdom held the first big roller coaster. The big kids had been so patient while we did so much little kid stuff for Matthew. Matthew was exhausted, and it took the whole family to care for him. We had a stroller for him because he didn't have the energy to walk that much. The roller coaster in Animal Kingdom was awesome, and a highlight, especially for Allison. She saw it on a billboard, and really looked forward to it.<br />
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When we finished there, we moved on to Epcot. By then, it was afternoon, and we were all pretty tired. We chose about 5 attractions and zipped around to them. There were some really cool rides there.<br />
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The one inside of the big golf ball is cool. It shows a history of technological advancements of mankind, from tools to the internet, and guesses beyond. When Justin and Matthew sat down in their car for that ride, Matthew started pushing buttons and set them up to listen to the whole presentation in Swedish. Justin was not pleased. <br />
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There was another ride there that simulates flight, and you travel by video all around the country to see all these cool sights. It lifts you up in a big row of seats, and moves you to and fro, and jiggles and bounces through the whole ride. It uses a 3-d presentation, and air to make it realistic. It was AMAZING. We had a lot of fun on that ride.<br />
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Here are some highlights from that day:<br />
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The petting zoo was fun, and thankfully had an awesome hand washing station to use before moving on.<br />
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Matthew and I relaxed by the water while the big kids and Dad went on Allison's roller-coaster.<br />
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The Epcot golf ball. Pictures don't do it justice. It's really cool!<br />
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One more, from a closer look.<br />
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Day 5: Universal Studios<br />
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Universal Studios was quite possibly my favorite. I'm totally nerding out here, but it has the Wizarding World of Harry Potter, how could it NOT be my favorite?? I will refrain from loading the blog up with those pictures, because it's my favorite, not Matthews. But let's back up. The thing the kids loved about Universal Studios was that they FINALLY got to go on some awesome roller-coasters.<br />
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When you ask Mikey what the highlight of the trip was for him, he'll tell you it was the Incredible Hulk roller coaster. I wish I had taken a picture. I took one look at it, and knew I would opt out. I'm such a wimp. Justin, Alaina, Allison and Mikey went on it, though, and they loved it so much they went twice. In the meantime, Matthew and I checked out some Spider Man shops and watched some amazingly decked out characters come and go. I am so bummed out that I didn't take better pictures of them, either, because they looked like they had just walked right out of the comic books.<br />
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So, Universal Studios consists of the classic Universal Studios park, which is more about the shows and movies, and then the Islands of Adventure park is set up in zones, or "islands" with themes.<br />
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They are: Marvel Superhero Island, Toon Lagoon, Jurassic Park, The Wizarding World of Harry Potter, The Lost Continent, and Seuss Landing.<br />
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Each one is so much fun, all on its own. There is a Spiderman ride that is SO cool! It was in a car (sort of) that jiggles you around, and you can't tell if you're really moving or not. It projects the storyline onto a wall in front of you, and it's done in 3-d. They use heat, wind and even water to make the ride as realistic as possible, and they send you through a Spiderman type of story, where he saves you from the bad guys. We all loved it because it was SO COOL! It was a little bit much for Matthew - kind of scary for him. But he was okay.<br />
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In Toon Lagoon, they went on one of those water roller-coasters, and got soaked, while Matthew and I waited. That was the only one that it was hard to wait for them on, because I was SO HOT! Then, we went to the Harry Potter rides and I geeked out in a way I'll probably never be able to again. We tried butterbeer, and saw all the shops on Diagon Alley, and took pictures in front of the castle.<br />
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There was a ride that was a lot like the Spiderman ride inside of the Harry Potter castle, and that one was my favorite. It used the same techniques to immerse you, but you were flying on a broom stick, and fighting dragons, among other things. I LOVED it! I waited with Matthew as the others went on a pretty intense roller coaster there, too, and then we moved on.<br />
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There was another water ride that soaked us all, and Justin's wallet got so wet that the "people dryer" machine wouldn't accept his money - it didn't recognize the denomination when it was so wet!<br />
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I loved the Dr. Seuss island, too. It was really authentic, and Matthew was able to go on a lot more of those rides. By then, everyone was tired enough to slow down and enjoy the kid rides a little bit.<br />
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Moving on to the regular Universal Studios park was a little bit overwhelming, because we were so tired, but we found some cool stuff there. Justin and the girls (Mikey opted out) went on this ride that goes straight up for 5 stories. You get to choose your music style and it plays your music for you throughout the ride. In the meantime, the boys and I watched another parade. This one had Spongebob, and Matthew was thrilled.<br />
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We saw a show about Shrek that was fun, and went on a Despicable Me ride. On this one, there was a broken seating pod, which we sat in, so they asked us to get off the ride and wait 'til the next time. But the next time, they forgot to load one less pod, so we waited again. In the meantime, I was asking the ride operator if there was anything they'd do for Matthew in the parade because he was a Wish Kid, and he said, "No, but I will!" and he went and got these guys that were dressed up as Minions to come and play and dance with Matthew. He was nervous about them, but remembers it really clearly. He still asks Justin all the time if he's Justin's minion.<br />
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Here are some highlights from that day:<br />
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Even the garbage cans and street names are whimsical in Dr. Seuss's island.<br />
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Sneetches IN!<br />
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Waiting to get onto the Despicable Me ride. <br /><br />
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Matthew and the Minions.<br />
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He warmed up a little bit to them...<br /><br />
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Aaaand a hug...<br /><br />
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Insane roller-coaster.<br />
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Okay, I AM going to geek out a LITTLE bit...<br />
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Hogwarts Castle (cue angelic choir).<br />
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Day 6: Sea World<br />
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By this point, it's safe to say people can see why we'd be exhausted! We could barely force ourselves to go anywhere. BUT we wanted to see Sea World, and what else were we going to do with our day anyway?<br />
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So, we packed up and headed to Sea World. The thing is, Sea World is almost all shows. You can't really skip a line for shows the same way you can for a ride. That presents a problem in that we had a lot of HUGE lines to wait in (remember, it was the middle of July in Orlando... it was hot, sticky and CROWDED!). Also, Sea World wouldn't let anyone skip a line if they weren't with the Wish Kid, meaning the big kids had to wait in a 2 hour line if they wanted to go on a roller coaster. So, we fizzled out on Sea World.<br />
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We did do two really cool things while we were there, though. We fed the sting rays, which was really awesome. It looks like their mouth is in the front, but it's really underneath them -- like on their belly! So, we were trying to feed their faces, and it wasn't working. Then a trainer came and showed us, and it was really cool to feel them swim over us and snatch it out of our hands.<br />
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Then we went to the dolphin show. I think that show was a highlight of the trip for all of us. Dolphins are SO COOL! They always look happy, and they are so friendly. They'll do tricks for you if they think you're going to feed them. We got to touch them and pet them and feed them. The trainer brought us extra food and showed us a lot of little extras because Matthew was a Wish Kid. It was something we'll all remember for the rest of our lives. I'm really glad we dragged our tired butts to Sea World.<br />
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After the dolphins, though, we left. We were tired. We played at Give Kids the World for the day, and enjoyed the pool and the attractions there.<br />
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Here are some highlights of Sea World:<br />
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Trying to feed their faces...<br />
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Our first peek at a dolphin...<br />
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They started showing off.<br />
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They ALWAYS look happy!<br />
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Feeding the dolphins<br />
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Dancing for a treat.<br />
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So friendly and trusting.<br />
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Day 7: The Ocean and the trip home.<br />
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This was our last day in Florida. Our plane didn't leave until afternoon, so we decided to check out early and go see the ocean. We didn't stay long, but it was a really fun little day trip. Cleaning up was crazy! We were covered in sand and water, and we went into a grocery store bathroom to change, one or two of us at a time. We loaded the wet clothes into plastic grocery bags, shoved them in the luggage and headed for the airport.<br />
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Here are some highlights:<br />
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Look at the cruise ship in the distance!<br />
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Playing in the water.<br />
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When Matthew's treatment was at its hardest, and he felt the worst, he always asked to go back to the beach. He remembered our trip to the Oregon Coast, and he pined for the ocean. When we started talking to him about his wish, he wanted to meet Mickey, but he also very specifically wanted to walk on the beach. This picture encompasses what Matthew needed the very most during the darkest days of his little life.<br />
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Thank you Make-A-Wish. Thank you Give Kids the World. Thank you Disney World. Thank you Universal Studios. Thank you Sea World Orlando. Thank you anyone who has contributed to any child's ability to take one of these amazing trips. They are filled with the memories of a lifetime.<br />
Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-69529288220398411752012-09-09T18:33:00.003-07:002012-09-09T18:33:55.263-07:00Florida - Part 1Wow, only 2 months since the last entry! Life sure does get away from you sometimes, doesn't it?!<br />
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Florida was so much fun, and it was this amazing trip that our family desperately needed. I'm so glad that we got the opportunity to go. Thank you, Make-A-Wish! Since we got back, things have continued to be insanely crazy in our house. I still struggle with my illness (for those of you reading who don't know me personally, I lost the baby in May, and the miscarriage triggered a catastrophe in my body. On Memorial Day weekend, I was diagnosed with a condition called Pseudotumor Cerebri, and it took months for the pain in my head to recede and for my eyesight to become livable. I have good days and bad days. That's why I don't blog like I used to. I hope to do better soon. I hope to <i>feel</i> better soon! It's slow progress, but I'm thankful for my doctors). But now that I'm not working anymore (I was laid off August 10th), and the kids have started school, things seem to be mellowing out a bit.<br />
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Matthew goes to preschool now, just up the street from us. He loves it, so far! It's called Little School Preschool, and he talks about it a lot. Alaina is driving out to West Valley to Hunter High so she can finish her senior year at the same school. Allison and Mikey have started their new schools here in Stansbury, and seem to be adjusting nicely. I'm working on getting myself enrolled in school, too. I'll know more by November. It's funny. I was reading some <i>old </i>blog entries today. Back to the beginning, kind of a thing. I read a statement from myself that I don't know how pediatric oncology nurses can do a job like they do, because I never could, but I'm grateful someone can. Turns out I think I can. That's what I plan to go to school for. Maybe not pediatric, but I want to be a chemo nurse. It's amazing, the things that can change in a single year.<br />
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But I digress. I wanted to talk about our trip to Florida! This trip was just what our whole family needed. It injected joy and hope into our lives, which had gotten pretty dark and sad for a while. I'm just going to give a play-by-play, to the best that my memory will provide.<br />
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We left for our trip on a plane from Salt Lake to Minneapolis at 6 am on July 9th. I always heard you should arrive at the airport 2 hours before your flight is scheduled to leave so you'll have plenty of time to get through your baggage check and security. FYI, at 4am in the SLC airport (yes, we did that...) the only employees on the clock are the ones buffing the floors. We waited in line to check our baggage for 1 hour, when they finally started accepting baggage at 5am. They promptly told us we had done it wrong and we needed to go get a paper from a machine over there and then wait in line again. By now, the line was very long, and I was not happy. But we did what they said, and the line moved quickly, and all was well in our very tired world. I was so nervous about getting through security because of Allison's braces, Matthew's port, Matthew's medicine, etc... but it was a piece of cake. It actually went so fast that I had to grab my shoes and get out of everyone's way to put them back on.<br />
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Then, we found our gate and waited. When they started seating people, we had no clue what they were talking about, so we stood in line with all the first class folks, looking silly. We were in the last group to board the plane, so we continued to look silly until they let us on the plane. Matthew got the window seat on one row, and Mikey got it on the other. The flight to Minneapolis was uneventful, but it became clear that I am much more afraid to fly than I used to be, and Alaina hates it. Also, Matthew thinks it's "like a ride." Especially if there's turbulence. I always tell him what a superhero he is, to fight cancer so bravely, and he thinks I'm weird. But come on... a 4 year old who thinks turbulence is fun? (says the lady whose knuckles turn white from holding the chair so tight if it even gets a little bit bumpy...)<br />
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So, we landed in Minneapolis (which is really pretty from the air! Very green and lots of lakes), and we thought an hour delay would be long. Turns out, not really. By the time we found our gate, it was time for the first groups to start boarding. This time we knew our place and boarded the plan at the appropriate time. This time the girls got window seats. This flight would connect us to our destination - Orlando. The flight was a lot more bumpy. A lot. I noticed that after we took off, it took a while for the plane to even out and fly smoothly. About 45 minutes before we landed, the captain got on the loudspeaker and told us that we were going to be making a "code yellow" emergency landing. The plane has 3 hydraulic systems, and one of them had leaked out all of its fluid, so they would be relying on a backup system to land. It was no big deal, he assured us. This is the kind of thing they are trained for. But just in case, the flight attendants were going to finish the in-flight service early so they could strap themselves in tight for the landing. Oh, also, they couldn't land the plane too close to the airport, so we would be way out at the edge of the landing strips, and there would be an emergency crew waiting there for us. You know, like a firetruck, ambulance... etc. But it was no big deal, he assured us again. A few times. Once they had checked us all out, there would be a little truck, called a tug, that would pull the plane closer to the airport so we could exit the airplane.<br />
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All jesting aside, I have to give the crew of that plane some credit. It really was no big deal. They took their precautions, and the landing was fine, the tug pulled us in, and all was well. We were just about an hour late.<br />
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There was someone from Give Kids The World waiting at the airport for us. She helped us get our rental car, and gave us directions to Give Kids The World. By the time we got there and checked in, we were all exhausted. Before you get any tickets to the theme parks, you have to attend an orientation class at Give Kids The World. There was one scheduled for roughly 2 hours after we arrived. So, we decided to rest a little bit, leading up to that. Then we'd hang around the village, and go to our first park in the morning. <br />
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BUT...<br />
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I'm lame, and I slept through it. I was super tired. So, then it delayed our start the next morning. We had breakfast, and then they all had to wait for me to attend the class before we could leave for the day. Luckily my kids are amazing, and on that first day, when we were so exhausted, the girls took Matthew out to play while Justin, Mikey and I snoozed.<br />
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Here are some pictures of Give Kids The World, and our amazing Villa: <br />
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This garbage can has vacuum power, so if you hold a napkin or paper up to it, it sucks it in. Matthew would HUNT for things to put in there!</div>
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This train drives all around the village looking for people walking somewhere. If they see you walking, they stop and offer you a ride, wherever you're going.<br />
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This is the Ice Cream Palace. I think this was the one place ALL my kids liked the most. Some days, they ate ice cream 3 times, just because they could.<br />
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This was a HUGE pool, and none of it was deeper than 3 1/2 feet. It was such a fun place to hang out with the family. There is a splash pad there, too, but it's behind the picture.<br />
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Here we are, outside of our Villa, just as we arrived.<br />
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This is the bedroom the boys slept in.<br />
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And the living room. That couch becomes a queen sized bed, which the girls shared. This way, they could stay up and watch TV, if they wanted to. Turns out they really just wanted to sleep, so they had to kick us all out at night.<br />
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The full kitchen, which was nice because we had dinner in the Villa most nights, out of sheer exhaustion.<br />
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The master bedroom.<br />
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With a nice view (if you can see past that funny looking lady!)<br />
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Okay, so just this much of the trip has become a HUGE blog entry, and my kids are feeling neglected. So, I think I'll make this a two-part deal. Either later tonight, or tomorrow, I will move on and talk about the theme parks.<br />
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I did say a few months back that I was just as excited about Give Kids the World as I was about Disney World, and I have to say, they did not disappoint. They treated us with so much kindness, and catered to our every whim while we were there. Whatever it took to make this a dream family vacation. If I lived in Florida, I'd find a way to volunteer there, because there is such an amazing spirit there, where they are granting the wishes of so many special children. I've never been somewhere that was more geared towards children. I felt like I hardly had to watch Matthew when we were there, because he couldn't possibly do any damage. This place was made for kids like him.<br />
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More to come...<br />
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<br />Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-6259295756483515232012-07-08T18:11:00.002-07:002012-07-08T18:12:13.737-07:00Leaving on a Jet PlaneOkay, I think I'm coming to accept that it's difficult for me to find time to blog these days. But, here we go.<br />
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To update about Make-A-Wish, we had a big reveal party for Matthew at the Wishing Place. It was really neat. He got to raise a star to add to the star sculpture on the ceiling, and it will stay there forever. Then, we went up to the Wishing Room, he unlocked it, and inside was the Wishing Wizard! He did not expect that. He wasn't sure what he thought of the guy, but he talked with him. He made sure to stay far enough back that the wizard couldn't grab him. They had a nice talk, and reviewed Matthew's wishes. The wizard told him he was going to be able to go to Disney World and meet Mickey Mouse and see his castle. After chatting for a few minutes, Matthew gave him a hug, and we went downstairs for cake and festivities, which included face painting and balloon tying. It was a lot of fun. Then, we got to go out back and throw coins into the wishing well.<br />
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So, with all of that said and done, tomorrow we leave for Florida. It has taken a lot of waiting to get to this point. The last few months have been really rocky, and knowing that this trip was on the horizon often kept us going. We realize that we will come back to all of the same problems, but it will be with a renewed sense of wellness, and family togetherness, which we currently stand very much in need of. Not that our family is splintering, or anything, we just need a few days to connect, without all of the outside stresses bearing down on us. That's what family vacations are for, right?<br />
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I keep hearing, over and over, that when you're on a wish trip, they totally roll out the red carpet for you. You don't have to wait in lines, the kids are showered with gifts, it is completely stress free. So far, that has been very true. We didn't have to do any planning. We have just packed our bags, and tomorrow, we will show up at the airport. When we arrive in Florida, someone will be waiting at the airport with a sign that has our name on it to take us to our rental car.<br />
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When we leave the airport, we will drive to <a href="http://www.gktw.org/">Give Kids the World</a> (or GKTW for short). In a previous blog entry, I said that was inside of Disney World, but I was mistaken. Give Kids the World is a separate resort, or theme park, if you will. It was built specifically for wish kids, not just with Make-A-Wish, but with multiple wish granting organizations throughout the country. The only way you can stay in the GKTW village is if you are with a wish child. The accommodations are a 2 bedroom villa with a kitchen and laundry room. It's built like a village, and the mayor of the town is a rabbit, named Mayor Clayton, who will come and tuck the kids in at night, if you sign up for it. There are restaurants, a wonderful pool area, miniature golf, and snack carts with delivery. Everything is free.<br />
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GKTW is within a 15 minute drive of Disney World, Universal Studios and Sea World, all of which we will get passes for. You are given a button to wear, to identify yourself, and the parks bend over backwards to make it special for wish families. <br />
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We're all packed and ready to go now. Just winding down for the evening. Our flight leaves at 6 am tomorrow, so we need to be to the airport by 4. It'll be a long day, but by this time tomorrow, we'll be in our little villa in Kissimmee, Florida.<br />
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The other thing on my mind is this. On this day last year, Justin and I both had strong suspicions that Matthew had cancer, but didn't want to alarm each other, so we hadn't talked about it. We were waiting for his fever to go back up to a high enough temperature to justify taking him to another ER, so that we could have some answers. I can't speak for Justin, but I felt desperate at this point, for <i>someone </i>to figure out what was wrong with my baby and <i>help </i>him. The ER doctor was the sixth doctor to see him for his infection in a month of infection, fevers, weight loss, poor appetite, and lethargy. <br />
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We will be on our trip when the 1 year anniversary of Matthew's diagnosis hits. He was diagnosed on July 13th, 2011. Most families take this time to allow themselves to reflect, mourn what has changed, grieve what's been lost. Even if the outcome has been the best possible outcome, nothing will ever be the same, right?<br />
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But, cancer has already taken enough from us. It's not going to steal our happiness while we're on this trip. Instead, I want to celebrate Matthew's life on July 13th. Matthew has fought a hard battle, and so far, he has been successful. He is a different child than he was a year ago, in many ways, but in many others, he is unchanged, unblemished by this awful thing that was thrust on him. His sweet nature, and charismatic personality is still in tact. On Friday, July 13th, we will celebrate his life. May it be long and healthy!Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com2tag:blogger.com,1999:blog-4619683350015395525.post-51042245534749410372012-06-23T12:59:00.001-07:002012-06-23T12:59:08.115-07:00Long Time, No SeeIt seems that my blog entries are becoming fewer and much further in-between. This time, it was because of my own health. I have had a rough couple of months, since shortly after the last blog post, and am just now well enough to sit at a computer - and look at it - for long enough to blog. Please don't take this as a lack of interest or commitment in my blogging, because as my health improves, my ability to write will, too. I am passionate about sharing Matthew's story, and about documenting it for him to have when he's older.<br />
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With that said, I'll start with an update on his health since April. He has done remarkably well in Maintenance. For a little while, it even seemed like he was doing too well - if there is such a thing. See, the goal of Maintenance is to suppress the cells that make the cancer, while not tanking blood counts. It's a low, steady dose of chemo, and the reason for the suppression is to ensure that the cancer doesn't come back. The easiest tool to measure that suppression is ANC (Absolute Neutrophil Count). Forgive me for repeating myself, but I know this isn't everyday language for everyone, so I'll briefly explain. Neutrophils are the portion of white blood cells that fight infection. Most people have a count ranging from 2000 to 8000 at any given time. During Maintenance, they like to keep it between 750 and 1500. This shows sufficient suppression of the cancer growing cells without tanking the immune system.<br />
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For the first two months of Maintenance, Matthew's counts were above 2000. It was nice, because we didn't have to worry about infection so much. He has been going to daycare, and playing with cousins. We've been to family parties - for once! - and we've really enjoyed the normalcy of it all. But, it also makes my heart feel heavy on some days, because if those cells aren't suppressed enough, it seems to me like he's at a greater risk of relapse.<br />
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Relapse is the ugliest word I know.<br />
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So, on his third appointment, his doctor was prepared ahead of time to explain this all to me, and also to increase the amount of daily chemo he gets. This chemo is called Mercaptopurine, or 6MP for short. After a month of increased 6MP, if the counts were still high, we would also increase his dose of Methotrexate, which he takes only on Thursdays, but it's 6 pills.<br />
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Knowing that his counts were supposed to be lower, I readily accepted this plan. It does run the risk of tanking his counts, but summertime is a good time to figure all of this out, because the kids are out of school, so we have lots of help if he can't go to daycare.<br />
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Surprisingly, after we had this discussion, when his blood test results came back with counts, they had lowered on their own. His ANC was 900. We don't really know what caused it to come down, so his doctor ordered Home Health to come out and get a blood draw in two weeks, which was last Tuesday. That didn't work out. Since we've moved, we have a new Home Health nurse, and he was very unfamiliar with pediatric cancer, he struggled with the port and couldn't get blood, so we're going to go up to Primary's on Tuesday, I think, to get his counts. <br />
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Also, at his last appointment, they did his lumbar puncture. He will get one every three months now, until the end of his treatment. He used to get them almost every week, so this is an improvement. Anyway, when they do a lumbar puncture, they remove some spinal fluid to make room for the chemo they're adding. The spine and brain are very pressure sensitive, and too much or too little fluid can wreak havoc. Also, it takes a while for the body to regulate it. This time, there was too much spinal fluid removed, and he got what they call a low pressure headache. He was pretty miserable for about a week and a half, and we went through half as much pain medicine as we have for the rest of the year, combined. <br />
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He's feeling much better now, and things feel like they're back to normal. It's amazing how much hair he has! Justin had to cut some around his ears last night, but he'll need a real haircut before our trip to Florida, which is in 2 weeks. It'll be the first time we've cut all that new hair. I'm sad because new hair is soft, like a baby's, and that feeling will be gone. But the bright side is that once it's gone, you'd never be able to outwardly tell that he's gone through what he's gone through this year. Unless he had his shirt off, because then you'd see the bump where his port is. <br />
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The one last thing to update is his drop foot. I don't know much about it yet, but it's caused by Vincristine, which he gets in his IV once a month. It's painful, I know that, and after his Vincristine the last few times, he has had a lot of pain for a couple of days. It's on the top of his foot, where it connects to the leg. I guess you could call that his ankle, but I think of the ankle on the side. Anyway, it's nerve damage that's happening there. A form of Neuropathy. It makes it really painful for him to walk, especially while there's still Vincristine in his system. It isn't permanent, and they can help him through it with physical therapy, which we'll be starting in a few weeks. Then we'll understand more about it, I think. I'm not sure if he'll continue to get all of his Vincristine, going forward, or not. Some of the other moms said they stopped it when their child had drop foot, and some said they lowered the dose, and some said they didn't change it at all. There aren't that many - maybe 5 out of the 150 or so in our group, so we don't have a lot to go off of. We'll just have to see how his doctors want to proceed.<br />
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I'm torn. On the one hand, Vincristine is part of the plan for ALL, which is tried and true, and all together it gives us his good prognosis. I don't want to compromise his cure rate. It's that simple. But on the other hand, we're saving his life so that he can live it. I don't want him to be permanently scarred by this. I want him to have every opportunity in life that other kids have. But a hard lesson I've learned this year is to look at the alternative. Better to have problems with the feet for life than the alternative, which is relapse, or worse. That's the cold truth of it, right there. In black and white. So, it'll be something we'll have to decide once the doctors have evaluated him, and once we understand the risks and benefits of both sides, I guess. Then, of course we'll pray and make a decision together.<br />
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It seems like such a small thing to worry about, really, in the grand scheme of things. I've seen so many kids go through so much worse. I guess I just want to have my cake and eat it too. I want him to live, and I want him to be able to move on with his life, forgetting that cancer ever took a minute of it away from him.<br />
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I read somewhere today that a wound is what lets the light in. It was so powerful to me that it brought me to tears. All the wounds my family has had inflicted on us during this last year (which is a lot more than the cancer alone) will make us better, in the long run. Right now, we feel tender, maybe a little too exposed, or vulnerable, but years from now, we'll look back on this and be able to see that it helped us become what we will be then. It's what the refiner's fire is all about. Gold goes into the fire messy, and comes out beautiful. Maybe the drop foot will be a blessing in the end, even if that's hard to see now. Maybe the same is true about the cancer, and the other crises we've had. Only time will tell.<br />
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The other day, I found this image and quote on Facebook, and it made me feel very hopeful.<br />
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"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history, it becomes more beautiful."<br />
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~ Billie Mobayed<br />
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Tomorrow, I'll blog about Matthew's second trip to The Wishing Place. They revealed to him that his wish will be granted, and held a star raising ceremony. It was pretty special! Stay tuned. Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com2tag:blogger.com,1999:blog-4619683350015395525.post-90996164620649525032012-04-26T08:44:00.000-07:002012-04-26T08:44:31.232-07:00Big PlansWow, fourteen days since I posted anything! So much is happening right now, and it's all good, but not much of it has to do with Matthew's cancer anymore. So, once again, I'll say no news is good news.<br />
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Matthew is doing fantastically well. At the last doctor's appointment, he was given the green light to return to daycare. We can only afford daycare if I work full time, so I asked my bosses if they would consider a schedule change for me. After some discussions, we all agreed on a schedule, and I'll start next Monday. It'll be 35 hours a week: Mon-Fri 8:30 am - 5 pm, except on Tuesdays, I'll get off at 11:30 am for doctor's appointments. Matthew will have one a month, I will have one a month, for the baby, and Allison will have one a month for the orthodontist. So, we'll spread them all among our Tuesday afternoons, and I should be able to manage it all.<br />
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In the meantime, Matthew is extremely excited to go back to "school!" He loves his daycare more than I can describe. He asks me to take him there almost every day. The last few times I have taken him to play, he has noticed that I'm the only mommy who stays. So, now, he tells me he wants to go to school with no mommies. He even said, "That's a X," making the motion of crossing me out. He feels pretty strongly about it. I've been kicked out. But it's good. He wants his independence back. He wants his life back. He deserves that. So, we're working it out for him. I'm so thankful for his good counts right now. <br />
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I kind of feel like I'm getting my life back, too. I'm excited to return to work full time. In my work world, I feel like I lost a lot of my identity, working part time. I was such a go-getter before, and then suddenly, I was just there for a paycheck. I'm happy that I can participate in projects, trainings, meetings, and so on, again. It'll be good for me. Cancer became my whole world for a while, and it shouldn't be that way. I don't want to give that monster one more minute of my life than it requires. <br />
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I had a humbling experience this week. I met a girl who is 22 or 23, and has two kids - one is 8, and the other is 1. She had her oldest at 16, and he was born with a rare type of cancer in his chin. They had to cut away much of his lip and chin to get the cancer gone. He also had a club foot, and went through some surgeries for that. Since the minute that he was born, this sweet little boy has been fighting for his life, and fighting for some kind of normalcy. He's really small, which can be a side effect from harsh cancer treatments, so I think that's probably why. He has a school bus that picks him up for school every day, and they take him to a special school.<br />
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This girl, at the tender age of 16, had this baby who was born into the cancer world. She said she was pretty much alone in it. She lived with her parents at the time, but they never really came up to visit at the hospital, which is where she and her son spent most of their time, because he was inpatient more than he was home. The baby's father was never a part of the picture. Even her friends didn't come visit, as you can imagine. That's a lot for a 16 year old to take in. She kept saying it was always, "just me and him." <br />
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At 33, Matthew's cancer, which was almost all outpatient treatment, mind you, was by far the hardest trial I've ever been through in my life. Sometimes, I think I went a little bit crazy from the stress. I cannot fathom what it would be like to go through that at such a breathtakingly young age, and all alone.<br />
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This boy beat that cancer 8 years ago. And two weeks ago, his mother got the news that there is more cancer. A different kind of cancer. They call it secondary cancer. You see, cancer treatment has a lot of side effects because they literally poison your body. One of the most horrendous side effects is that it can actually cause cancer. Thus the name secondary cancer.<br />
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So, here they are, 8 years later, with the news that they must fight this battle all over again. You always think you know how you would react. My instinct is to say I would break under that pressure, but that's what I thought about any childhood cancer diagnosis before Matthew's diagnosis.<br />
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We bought our house from a couple whose 2 year old daughter had fought cancer. Strange coincidence, huh? Anyway, I remember thinking that there was no way I could ever survive that, and my heart was so heavy for them. But the Lord prepared me to handle it. He built me up in the years between buying this house and Matthew's diagnosis, and when the time actually came, I was prepared, and I was okay. The same is true for my whole family. It's amazing, looking back at the steps that took place to get us prepared. Miraculous, really.<br />
<br />
So, I can't say I know that a relapse or secondary cancer would break me, because I really don't know. But I think it would. I think that would surpass the limits of what I can handle. But, this girl was so strong. She wanted her independence. She kept saying she had "big plans." She still understood that she was young and had the whole world ahead of her. She just had to get through this dark patch. I was completely humbled by her. She just wanted her son to get well so they could have a happy life together. She said she'd give him her own foot (because of his club foot) or both, even, or a hand, if he needed it, if it meant he'd be whole again.<br />
<br />
She helped me to realize that I don't need cancer to be at the center of my world. Am I still angry when I think about how little funding and attention there is for childhood cancer? Yes. Will I still work to raise funds and awareness for the rest of my life? Probably. Children are dying, and they get the smallest piece of the pie, and it's not right. But I cannot let it be the only thing in my life anymore. My family is ready for a fresh start - especially Matthew. It's time we live our lives again.<br />
<br />
It's time we make "big plans."Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com2tag:blogger.com,1999:blog-4619683350015395525.post-20972379186440537392012-04-12T08:34:00.002-07:002012-04-12T09:20:57.814-07:001 Month DownWell, Matthew has completed the first month of his Maintenance phase of treatment. It wasn't as bad as I thought it would be. In my mom's support group, there are several moms whose kids are just a couple of months ahead of Matthew, and they are all struggling. They all got the highest arm of treatment in the study randomization. That means twice the amount of Methotrexate. All of them are feeling worse now than they did through the rest of treatment. I feel so bad for these poor kids! Maintenance is a long time for them to feel like this! For most of them it will make up roughly half of their lives before it's through. Watching these cuties struggle, I was really afraid about Maintenance, and I was nervous to start it.<br /><br />I'm grateful that Matthew randomized into the standard arm of treatment, and I'm grateful that he's handling it so well.<br /><br />The doctor's appointment went really well. We went to visit a friend in ICS before his appointment. This poor kiddo has had a really rough go of it, and is in the midst of a rough couple of weeks, so Matthew and I went to the dollar store and bought him a bunch of things that he could do in his bed for fun. Matthew was excited to give him his gift, but he was not excited to be in an ICS room again. Every time we try to visit someone, he won't go in further than the door area. I think he's afraid we'll make him stay. Anyway, after our friend checked out his gifts, and picked the first thing he wanted to do, Matthew was done. He didn't want to stay and play at all, because he was too uncomfortable in the ICS room. I can understand that. I didn't want to push him.<br /><br />Since we had over half an hour left before his appointment, we went downstairs to the cafeteria and got some snacks, then we went outside to eat them. I think it helped him feel a little less stressed to be outside in the sun and fresh air. We stayed out there until Justin came, and then we all went inside together.<br /><br />The checkup was a pretty typical one. We talked about how he's managing, and the doctor said she was very pleased with his progress. She said it was just fantastic to see how he seems to be feeling. We talked about my pregnancy, and she said that the only precautions I really need to take are to wear gloves when I handle his pills or body fluids (like if he were to wet the bed, I should wear gloves when I change the sheets). We talked about his Make-A-Wish trip, and she said it should be fine for him to go. She said she had recently sent back all the paperwork.<br /><br />Then the nurse came in and accessed his port. Since we left the house so early for his appointment, I hadn't put any Emla cream on his port site. That's a numbing cream we use, but it has to be on for an hour before port access for it to work, and it can't be on for longer than an hour and a half, I think. Anyway, instead, we used what they call the freezy spray. It's fast acting, but Matthew hates it. He was more nervous about his port access than usual anyway, because it's been a month. So it was kind of rough, and he cried for a while after, but when he stopped crying, he was really over it, and he was okay again. The nurse took his blood for labs, and then we went back to infusion.<br /><br />Watching the nurse give the chemo was more bothersome to me than I expected. It's interesting how quickly you become desensitized to those things, and how quickly that goes away when it isn't happening daily or weekly anymore.<br /><br />Anyway, after a quick push of chemo (Vincristine) and some things that clean out his port, we were done. We left, and headed out to pick up Mikey from his carpool. On the way home, I called the clinic to find out about his counts. It was rather surprising!<br /><br />White Blood Count: 5.2<br />Hemoglobin: 11.9<br />Hematocrit: 36.6<br />Platelets: 344<br />ANC: 4.6 (or 4600)<br /><br />These are the counts of a completely healthy child. The doctor said these are fantastic counts, and she can't believe they're this high. Also, I was mistaken - they don't adjust the meds for high counts during the first round of Maintenance. So, we're 30-ish days into this round, and we have until day 84 before it ends, and we don't have to worry about them upping his meds until at least then. The only time they adjust them during the first round is if the counts have tanked. This means we get to continue just letting Matthew be healthy for a couple of months. What a wonderful thing!<br /><br />Also, she said that he can go back to church and daycare. He's so excited, he can barely contain himself. It's time for me to find full time work, if for no other reason than to fund his time at the daycare.<br /><br />He's on day 3 of 5 on his steroid pulse right now. The food thing has been apparent, but not obnoxious, as of yet. He did cry for pizza and breadsticks last night, and even though we are trying to be really careful with money, Justin finally gave in and sent the girls for a $5 pizza. Thankfully, his mood hasn't really been affected much by the steroids this week. He's more antsy, and has a shorter attention span, but that's about it.<br /><br />Last night, Miss Caroline came for his weekly pre-school lesson. The last time she was here, she was working with him on letter recognition, and he said to her, "W-H-Y spells why. Like Superwhy!" She was shocked. She couldn't believe he was spelling small words like that. So this week, instead of letter recognition activities, she brought small work activities. He didn't have much of an attention span, but she got him to pay attention to it for 5 or 10 minutes. The activity was a paper that had A and T printed on it, and then she brought little squares of paper with different letters printed on them. You would put the random letter in front of the AT, and see if it made a word. It took her about two words to get him to understand the activity (something she didn't expect to happen at all, because that's so advanced for him), and then he just started sounding out the words on his own. C-A-T spells cat, and so on. She was floored. It'll be interesting to see what happens with him. She said soon, she's going to have to bring him books to read to her. I'm so grateful that she comes, and keeps working with him so he won't miss out on the preschool he was getting at the daycare. What a wonderful woman she is!<br /><br />So, for now, we're looking forward to church, and I'm trying to figure out what to do about my work situation. I'll update again soon.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-26138082406953987572012-04-09T08:06:00.006-07:002012-04-09T09:29:06.124-07:00Easter WeekendI guess I'm getting really bad at updating the blog regularly. The reason is that there's nothing new to say. That's a good thing. Things are getting so much better now, with the lower doses of chemo, and Matthew is playing more. He gets out and runs and plays. I let him play with other kids a lot more, as long as they aren't sick. He's still tired of being cooped up in the house, and when he feels this good, he's a lot more outspoken about it. He wears me out, trying to satiate his need to go somewhere, and run and play. I can't wait 'til the doctors give the stamp of approval for him to return to daycare. That's where he really wants to be. It seems that our general plan is that I will look for full time work (hopefully my own job will open full time hours back up to me, but if not, I'll expand my search within my company, or outside, if I have to). Matthew won't be able to go back to daycare until I have found full time work, for financial reasons, but it'll be a good step in the right direction, just to have the approval. That would also mean he could go back to church. Anyway, in the meantime, the lack of blog posts is very much falling within the "no news is good news" cliche.<br /><br />In other news, I found out about a week ago that I'm pregnant. Matthew is really excited to be a big brother. All the kids are happy about it in their own different ways. At first, it had to sink in with the girls. They're teenagers, and it's unusual for their mom to still be having babies. But I think they're both really excited now that they've adjusted to the news. Mikey, too. I always wanted another baby after Matthew was born, but it seemed like the time was never quite right. Then, when cancer became our main focus in life, I thought it was ruled out completely. I didn't want to wait until after treatment, because Matthew will be turning seven then, and I'll be older than I wanted to be when I finished having babies. It never occurred to me that having a baby during Maintenance would be a happy medium. It seems like right now, the pendulum is starting to swing back, and although cancer is still a huge focus for us, it's not the center of the universe anymore. There's room for other things. Like a baby. I'm really happy we get to complete our family. Babies bring joy. This will be good for us all.<br /><br />This weekend was sure a wonderful one for Matthew! In a lot of ways, it was like he was re-introduced to his life. He got to go to 3 Easter parties, complete with boatloads of kids. Saturday, we went to Justin's dad's house for his annual egg hunt. He got to play with his cousins - some who he maybe hadn't seen in a whole year, because of the cancer-imposed solitary confinement. He had so much fun with them! After the egg hunt, we had a fantastic meal. It was so nice, just to relax with family again, after so many months of skipping these things. I caught a few pictures on my cell phone, but not nearly as many as I should have.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYeyED4E0inPw3Y7tAzDuGIjQJSOEF6G7Fdcw2RcAfNd72_nQDlxMMdGKVjg3jnXS_ytThfA9JRtk88cKIGUQJ247E_6lAN9uvs01ROtAOuoSgBHn7nsw_he8EG3rE_JDBk74Lii-F-pY/s1600/Matthew_Easter.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYeyED4E0inPw3Y7tAzDuGIjQJSOEF6G7Fdcw2RcAfNd72_nQDlxMMdGKVjg3jnXS_ytThfA9JRtk88cKIGUQJ247E_6lAN9uvs01ROtAOuoSgBHn7nsw_he8EG3rE_JDBk74Lii-F-pY/s400/Matthew_Easter.jpg" alt="" id="BLOGGER_PHOTO_ID_5729425036952729842" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2LbwuZV5oVxFbyXcHKViXtA0PzGzyV19p6k-ooaTK6srY7_EqRX2XkGWAnrhHhnSEAPYyjvUOz2uqdKpq2k4fZyBpTkROIKnd5z85msdciy9lkVXg8W9j1dNW73DQfURdzk_b4OQJeU8/s1600/Matthew_Easter_2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2LbwuZV5oVxFbyXcHKViXtA0PzGzyV19p6k-ooaTK6srY7_EqRX2XkGWAnrhHhnSEAPYyjvUOz2uqdKpq2k4fZyBpTkROIKnd5z85msdciy9lkVXg8W9j1dNW73DQfURdzk_b4OQJeU8/s400/Matthew_Easter_2.jpg" alt="" id="BLOGGER_PHOTO_ID_5729425279423042338" border="0" /></a><br />After that, we went to Miss Caroline's house for her yearly Easter event. It was our first time there, although she had invited us last year at the daycare. She said a lot of the kids were getting too old for an egg hunt, so she started a new tradition this year: The Easter Olympics. They were cute, relay-type outdoor games done in teams. For example, she dumped a bunch of plastic eggs on the ground, and each team was assigned a color. One person at a time could go get one egg in their team's color and bring it back to the basket. If a little kid got the wrong color, the next kid had to take that egg, and put it in the "bad egg" basket, and they would forfeit their turn to pick up a good egg. The first team to get all of their eggs won. She had about an hour and a half worth of games like that, and completed the event with gold medals and trophies for the highest medal winners. I only got video of this party, and I can't figure out how to get still shots out of the video. I'd post the video, but there are loads of other kids in it, and I don't know if their parents would like that. Anyway, he did a LOT of running at this party. In the video, you can see that it tired him out. He was struggling to run by the last game. It was interesting, because he kept running until he was completely tired out. Then he sat down on the driveway. One of the other parents said to him that he should keep helping to pick up all the eggs, and he said, "I've picked up all the eggs I can."<br /><br />He definitely knows his limits. He ran right up until the end, compared to the rest of the kids, who walked when they got tired of running. But then he knew when it was time to sit down and rest. I hope someday, he'll feel strong enough to stay up with the other kids again. I was really happy he got to play with so many kids this weekend, but I was sad to see him struggle. Thankfully, it didn't bother him at all. I think he's too little to understand that it's made him a little bit different. I really hate cancer...<br /><br />Anyway, on to Sunday. We went to my mom's house with the kids for Easter dinner. My sister and her husband and kids were there, too. We did another Easter egg hunt. Matthew has been telling Grandma for weeks now that he will hide the eggs at her Easter party. He's so matter-of-fact about it, and made the decision all on his own. He could not be talked out of it. He was really excited when we got there, and the girls helped him hide the eggs. Then all the kids went out and hunted for them while we had dinner cooking. I got a lot of pictures of the back of kids' heads. But I liked this one, in particular.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisD-zjZfT7n2sZkRtbs5i1g6i2kOEnx5JnbS3RVZlawxQfWNIqHOARV74PEa1bPnQqJhGuna3YyBKq3QTff0Twk4zqEyp3otLgAAoLJXpLmrzTGsdXr48j2XMEnZ9bbc9KAYAYW5Ho5ec/s1600/Matthew_Easter_3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 245px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisD-zjZfT7n2sZkRtbs5i1g6i2kOEnx5JnbS3RVZlawxQfWNIqHOARV74PEa1bPnQqJhGuna3YyBKq3QTff0Twk4zqEyp3otLgAAoLJXpLmrzTGsdXr48j2XMEnZ9bbc9KAYAYW5Ho5ec/s400/Matthew_Easter_3.jpg" alt="" id="BLOGGER_PHOTO_ID_5729429164109634738" border="0" /></a>This is Alaina helping all the kids count their eggs, so we could be sure we had them all. In this picture, it was Matthew's turn. I like it so much because of his hair! It's so thick these days. You almost can't tell he was bald anymore.<br /><br />Anyway, we had a good time at my mom's house, and again, Matthew got to rediscover some cousins. My sister has two boys, and Matthew is right in-between them in age. He had a great time playing with them! I hope my sister and I are able to plan some fun activities throughout the summer, so these kids can get together again soon.<br /><br />We're looking forward to Matthew's doctor appointment on Wednesday. I'm really hoping they'll say he can go back to daycare. I'm also hoping to see good counts. He seems to be handling his Maintenance so well. I really hope his body is reacting like it's supposed to.<br /><br />I'll update after his appointment to let you all know how it went.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-38752270308700823172012-04-02T07:00:00.003-07:002012-04-02T08:06:26.413-07:00A Low, Steady DoseWell, I realize it's been a while since I've blogged, so I thought I would today, while I have a quiet moment.<br /><br />Matthew is doing really well. Exceptionally well. I'm very pleased with his adjustment to Maintenance.<br /><br />During his heavier treatment, he was always on this big roller-coaster with chemo and his counts. They'd give him chemo, and his counts would tank. They'd push it 'til he needed transfusions, and had no ANC to fight off infections. Sometimes, those things would cause the chemo to pause, but not usually. I think he only had one delay, which is unusual - most kids have more, but he just handled it all so well. So anyway, his counts would tank and then they'd give him a break for "count recovery." So, every once in a while, he had two or three weeks off of chemo to allow his body to build its defenses back up. During these breaks, it was like a window that allowed us to see him as a normal 3 or 4 year old. I cringe at that word - normal. But it's the only way to describe it. Before all of this, he was normal. He went to daycare, and played with his friends, and ate at the kitchen table. During his treatment, he has suffered from a lack of contact with the outside world. It was by necessity, but nothing about it has been normal. I can't wait until his life is more normal again. But anyway, at the end of these count recovery breaks, they would give him more chemo that would tank his counts again.<br /><br />I was always on watch for fevers. I can hear a child cough from a mile away, and won't let Matthew spend time with a coughing child. Before someone could visit, I'd always ask if they, or anyone in their home, were sick. Matthew watched a lot of TV. He was tired all the time. And this leads me to my point.<br /><br />I don't think I realized just how tired he was during that time, until the roller coaster chemo stopped. Now, he's on a low, but more steady dose of chemo, and the goal is to keep his counts at an even rate, which is still immune compromised, but not tanked out. I can tell that he feels better. He never, ever complained about it before, but now he doesn't want to watch TV anymore. He wants to play! My sweet, brave boy. He just wants to get back to living his life.<br /><br />I told him the other day that he doesn't go to his "school" (daycare) anymore. We were driving past there, and he was talking about going back, and the truth is, I don't know if he'll ever get the chance to go back. So, I was honest with him about it. He was SO mad at me! That's HIS school, and he WILL go back! Now, more than ever, I see that I need to find a way to make that happen. He needs his friends. He needs the lessons he learns there. He needs the teachers, who love him so much.<br /><br />I can't wait for him to be off treatment completely. Right now, it seems like an eternity to wait. 2 more years, and 5 more months. Well, I guess closer to 4 months now. I know it'll go by so fast, and then we'll be able to move on with our lives, but from this angle it looks awfully long. For most cancers, treatment is less than a year. Of course, there's usually a trade-off of prognosis. I wouldn't dream of trading his good prognosis for shorter treatment.<br /><br />And in the meantime, Maintenance seems a lot better, so far. Since he started Maintenance, he's had the croup, and a cold, and he fought them both off on his own. This is a good thing. No fevers, no antibiotics. Just good old Neutrophils, fighting off infection the way God intended.<br /><br />In spiritual matters, the LDS General Conference was this weekend, and I swear, it's like they were talking to me. I know it feels that way every time, but I don't know if I've ever heard so many references to sick children, or families facing adversity of monumental proportions. Elder Ronald A. Rasband gave a talk specifically about this. His grandson was born with major health problems and spends a lot of time at Primary Children's. He said the staff there are angels, and they are aware of the worth of every tiny soul they care for there. Boy! Did he hit the nail on the head or what? Sometimes, in quiet moments there, you can feel the angels. Especially in ICS. And he talked about how hard it is to go through times like this, but how much growth you experience from it, too. I think it was in his talk, but it could have been another - but it was said that if we were to see someone drowning, we wouldn't ask them if they needed help, we'd jump in and help them. He said it should be the same when we see a family suffering from overwhelming adversity, such as life-threatening illness. It made me realize that I do this a lot. I ask people if they need help, and I know better because when we were in crisis mode during the first few months of Matthew's treatment, the thing that helped me the most was when people didn't ask, they just did. So many people showed up and knew their unique way of offering help, and they just did what they could. With all of the efforts combined, we were carried through. I will be better about just doing something from now on. And to those of you who did all those things for us - thank you. It really was like being rescued while drowning. We'll never forget the kindness we were shown during that impossibly difficult time.<br /><br />Matthew's next appointment is April 11th. I'm anxious to hear how his counts have held up for a whole month. If his ANC is 1000, they'll leave his doses as they are, which would be a really great thing. If it's too much higher, they'll increase his dose, which could make him tank. I'm nervous that will happen. He always has better counts than they expect, so I think he'll end up with higher than usual doses. If his ANC is low, they'll decrease his dose and try to work their way back up to the current dose.<br /><br />For the last couple of months, his doctor has been telling me to wait a couple more months to talk about daycare or preschool. I'm hoping this month will be the month. Poor Matthew might not survive another month.<br /><br />I'll update again soon. If not before, than after his appointment.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-77514058536258931222012-03-22T08:09:00.003-07:002012-03-22T08:29:33.464-07:00Making Up For Lost TimeWell, it only took me 9 days to forget a pill. In a classic facepalm move this morning, I realized, while driving home from dropping Mikey off for his carpool, that I didn't give Matthew his pill last night.<br /><br />Really?<br /><br />Maintenance started less than 2 weeks ago. He hasn't even tried out all his new medications, yet.<br /><br />But, on the bright side, in 8+ months, it's the first pill I've forgotten. This particular pill, 6MP, has to be taken on an empty stomach. No food before for 2 hours, or after for 1. That doesn't really happen much with Matthew, except at bedtime. But sometimes, he has something to eat at bedtime. So, then I wake him up a few hours later to take it, which is really fun. Really.<br /><br />Well last night was one of those nights when he wanted something to eat at bedtime. Any time he asks me for food, I give it to him, because he's eating so few calories right now. So, I gave him a corn dog at bedtime, and then I put him to bed, planning to wake him up in 2+ hours to give him his pill.<br /><br />Except then I fell asleep.<br /><br />So, after totally beating myself up over it this morning, I told my dear husband, who barely batted an eye. He is so good to me, especially when I'm being hard on myself. So then I called the clinic and they said not to worry about it either. They said don't double up on it, just skip it for the day, and give him his regular pill tonight.<br /><br />Okay, I guess it's not the end of the world. He <span style="font-style: italic;">will </span>get roughly 950 more of them in the next two years and 5 months.<br /><br />In other news, Matthew is feeling really good - I can tell. He had his preschool lesson from sweet Miss Caroline last night, and he flew through what she had planned. He told her, "W-H-Y spells why, like Superwhy." She was blown away. She didn't realize he was starting to spell small words, because they haven't had the chance to sit down and go over actual school stuff in a month or two. When he isn't feeling well, they mostly play with Silly Putty and then play Memory. But last night, she said she needs to up his lessons a bit.<br /><br />That wouldn't have gone so well if he wasn't feeling well, or if he was on steroids. Because when those two things are going on, he won't pay attention. I'm so grateful that she's so patient with him!<br /><br />One thing that happens, though, when Matthew is feeling well is that he gets cabin fever. Combine that with Spring fever, and he cannot stand to stay in this house for one more day. He desperately wants to get out and play and get back to living his life.<br /><br />At his last two clinic visits, I've asked his doctor if we could start looking at preschool or daycare again, and she has said we need to wait. We need to give it a couple of months to see how he settles into Maintenance. I wouldn't have a hard time being patient, except that since he's feeling well, he is having a REALLY hard time being patient. He runs me ragged trying to keep up with him.<br /><br />I don't blame him, though. He has missed 8 months of his life. In 4 year old terms, that's a LOT of time! My soul rejoices when I see him acting like a normal 4 year old again. I feel like I'm really starting to get my little boy back. So, for the next few months, my primary focus in life will be helping him make up for lost time.<br /><br />I don't think I've ever been more grateful for anything in my life than the fact that I get to help him make up for lost time right now.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-8433790976620905642012-03-19T07:39:00.002-07:002012-03-19T08:21:32.963-07:00Maintenance - Week 1Well, we've completed most of week 1 on Maintenance. So far, it's mostly okay. It's different, not having the nurse come on a Monday morning. I haven't freaked out over lack of counts yet. Hopefully, I'll be able to continue to maintain my cool. No appointment tomorrow, either. It's nice to be making other kinds of plans. I'm going to take Matthew to my friend's house to play on the Wii with her daughter while we visit. I still haven't ventured to take him many places, but this friend's baby is also immune compromised, so I know they're also really careful about germs and exposure. It'll be wonderful to spend the day with friends, for both Matthew and for me!<br /><br />Also this week, my sister-in-law will be coming with my niece, who Matthew LOVES to play with! They're bringing cupcakes.<br /><br />It seems like we're taking the first steps into a much happier time for both of us. Hopefully, the whole family will feel the effects of that.<br /><br />Week 1 was a little rough, because of the steroids. I really don't think most kids deal with them the same way Matthew does. They're really hard on him. He is always an emotional mess when he's on steroids. They all are, but it gets pretty insane with him. During his steroid treatments, it is my full time job to care for his needs, and he won't do any activity alone. If he wants to watch TV, I have to watch with him. Being in the room with his isn't good enough. There is no independent activity. I love spending time with him, but during these times, nothing else gets done at all. I'm glad they're only 5 day pulses, but even so, I will be counting down the months now, based on how many more steroid pulses he has. 1 down, 28 more to go.<br /><br />He also gets really hungry on steroids. He kept me running every minute during the day all week. There were dishes all over the house from his food needs. That's a good thing, because he needs the extra padding. He was looking pretty thin lately, and the nurse and doctor had both asked about it. I was worried we were going to have to take some kind of action, like appetite stimulant drugs. Eventually, if they won't eat, it leads to a feeding tube, which I really want to avoid. I don't think that will happen with Matthew, though, unless he gets bad mouth sores.<br /><br />It's been roughly 24 hours since his last dose of steroids, and already, he's content just to be in the same room with me, and he didn't quite finish his bowl of cereal this morning. It's wild how fast the main effects of that drug wear off.<br /><br />It'll be nice to see how this week goes, without the steroids. He'll be introduced to a new form of a chemo he's had lots of times. Methotrexate - which he's had in his IV plenty of times, and in his spinal fluid lots and lots of times - but this time it'll be in pills. It seems like some of the kids are getting really sick from it, but I think they have higher doses of it for their body weight because of different study arms. I hope and pray that it's not too hard on Matthew, because this will be the new normal, and for a long, long time.<br /><br />Here's to a good new normal!Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com2tag:blogger.com,1999:blog-4619683350015395525.post-81906614016365191452012-03-15T10:03:00.043-07:002012-03-15T12:49:09.047-07:00Declaring His WishMatthew was introduced to the <a href="http://utah.wish.org/">Make-A-Wish Foundation of Utah</a> yesterday. I blogged last week about how he got his key in the mail. He carried it everywhere with him for days. He slept with it, ate with it, and lost it at least 3 times, which launched full scale search and rescue missions in our house. He was so excited to go make his wish, he could barely stand the wait.<br /><br />We asked his wonderful volunteer preschool teacher, Miss Caroline, to come along with us to take pictures. She is comfortable with Make-A-Wish, because she used to volunteer for them. Also, she has given so much to him through this dark time. We're really glad she got to be a part of it.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgNb7hvDOaXZKEw7a3UB_dt9DGx2th31Csv4BVvlpQCKqugcUVlN-x2ip5mrm5yQk10sf3kAasR3zLr5pfWtGA_U5FIqyid44qUBjdMgZlvzmRHU7At__U2KKb1C1RJ0TZQizwaHpAMrs/s1600/GEDC0211.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgNb7hvDOaXZKEw7a3UB_dt9DGx2th31Csv4BVvlpQCKqugcUVlN-x2ip5mrm5yQk10sf3kAasR3zLr5pfWtGA_U5FIqyid44qUBjdMgZlvzmRHU7At__U2KKb1C1RJ0TZQizwaHpAMrs/s400/GEDC0211.JPG" alt="" id="BLOGGER_PHOTO_ID_5720172486321667378" border="0" /></a>Can you see the love between them? It brings tears to my eyes.<br /><br />When we arrived at the building, we could see Matthew's volunteer Wish Granters inside, along with one of the Make-A-Wish employees and Miss Caroline. There was a poster board in the door on a stand with balloons that welcomed him by name.<br /><br />In the entryway, we learned a little bit about the history of Make-A-Wish, which began with one boy's wish to be a police officer. He got a real uniform and a badge. Make-A-Wish came to Utah when one girl wished to see the snow. For many years, the foundation was run by employees and volunteers completely out of their own homes and the homes of the Wish Kids' families. Finally, and I can't remember how long ago - maybe ten years? - they built a building in Utah, called The Wishing Place. When they built this building, they got lots of input from the children who had already made their wishes. They wanted to know what would make it magical for the kids who would make wishes in The Wishing Place. They came up with a party room with a stage, a ceiling full of stars with Wish Kids' names on them, a board game to help identify the wish, and a wishing room inside of a magical tower.<br /><br />We toured the facility and saw the stars with Wish Kids' names in the ceiling of the lobby.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnz67uWTZaNPHShzBVZnz8Ob95R67VebZI_qDyxuBg5_WDQMpYGgyj_GN9-wI4BzUPjxca8fk5kLQHulGv0jrffvaJmG1OW7VptSAmdC9orTTHQhZzs3bltRVqEuqjPsEwMZBZ1MYWl8g/s1600/GEDC0144.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnz67uWTZaNPHShzBVZnz8Ob95R67VebZI_qDyxuBg5_WDQMpYGgyj_GN9-wI4BzUPjxca8fk5kLQHulGv0jrffvaJmG1OW7VptSAmdC9orTTHQhZzs3bltRVqEuqjPsEwMZBZ1MYWl8g/s400/GEDC0144.JPG" alt="" id="BLOGGER_PHOTO_ID_5720186748871324786" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnz67uWTZaNPHShzBVZnz8Ob95R67VebZI_qDyxuBg5_WDQMpYGgyj_GN9-wI4BzUPjxca8fk5kLQHulGv0jrffvaJmG1OW7VptSAmdC9orTTHQhZzs3bltRVqEuqjPsEwMZBZ1MYWl8g/s1600/GEDC0144.JPG"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6y6XSYwiboHSHWzJtQs76OvuuifQzj9DTNERiXmkXBCVNRGx00QDpzWnpix8EwwnX45lkIT9UyZtZWX78PF-G5VLmqoslNLcpaWXjOWhTYxyS-FAvfRwmeqEJONiJakdoSVPzFwep100/s1600/GEDC0144.JPG"><br /></a>And pictures of some other Wish Kids, along with a short description of what their wish was. I saw a go kart, a white horse, lots of wishes to meet celebrities, and lots of trips to Disney World. (This one's a tad blurry, but I kind of like it that way, to protect the kids' indentities.)<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiouSz_zkTxeJDqWrDKjjk9wK3NWxoRWd9LYxaw_UqZmJsqLqEvc5lVl1WgRg_YEOfl9oT9y7-RVegvxhBJm31jTmCxg98W0fTRR92160orX1m9ugIVkACxryyEB-l40ohUcEia1HSbCnA/s1600/GEDC0149.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiouSz_zkTxeJDqWrDKjjk9wK3NWxoRWd9LYxaw_UqZmJsqLqEvc5lVl1WgRg_YEOfl9oT9y7-RVegvxhBJm31jTmCxg98W0fTRR92160orX1m9ugIVkACxryyEB-l40ohUcEia1HSbCnA/s400/GEDC0149.JPG" alt="" id="BLOGGER_PHOTO_ID_5720187506280027138" border="0" /></a><br />Then we went upstairs, of course in the elevator and Matthew got to push the buttons. We played The Wishing Game.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4WtSJVY1Nt6BkeXIXcxro-lUHmkd3vPEeeAO9h1lm7FaoiT-srwjtomTQJYt-aoa-ot1huv90FT7UnISPIf6krw1_O2XETLAxy7LjaxJaTp8mLzqZn96ZhNMdyVFwOclfMuJn3TPOezU/s1600/GEDC0155.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4WtSJVY1Nt6BkeXIXcxro-lUHmkd3vPEeeAO9h1lm7FaoiT-srwjtomTQJYt-aoa-ot1huv90FT7UnISPIf6krw1_O2XETLAxy7LjaxJaTp8mLzqZn96ZhNMdyVFwOclfMuJn3TPOezU/s400/GEDC0155.JPG" alt="" id="BLOGGER_PHOTO_ID_5720189240611305426" border="0" /></a><br />With Matthew on steroids, we had a hard time getting him to pay attention to the game, but I think he liked it anyway. And I think everyone else did, too.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGU_e4pBOUNiHmfraaSjwtWIhf_3kxc2lSwmELfp5mgT9QeRasqOSVlw1l-kQdf5y3lT1a61d4v1SpuSd03ZNvNMXbyp5VGl_UbomgC4TxGUg5eYaF-rqms0WnZCwEHc8uDj55cV2UmPE/s1600/GEDC0161.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGU_e4pBOUNiHmfraaSjwtWIhf_3kxc2lSwmELfp5mgT9QeRasqOSVlw1l-kQdf5y3lT1a61d4v1SpuSd03ZNvNMXbyp5VGl_UbomgC4TxGUg5eYaF-rqms0WnZCwEHc8uDj55cV2UmPE/s400/GEDC0161.JPG" alt="" id="BLOGGER_PHOTO_ID_5720189873137606818" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJhIdVvPaBVFt07dScwnDDpHk9IGjj3e944WPuZAk-LvMradvulgC4v5zQC7z_OAM2UpGZ_siJNEhXo_a-noEiQaazjEdp5Nlbs51WUg1T1pInQlP6ZG2O4Cr3H-pIcJ2tsKE8NT3gx6I/s1600/GEDC0164.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJhIdVvPaBVFt07dScwnDDpHk9IGjj3e944WPuZAk-LvMradvulgC4v5zQC7z_OAM2UpGZ_siJNEhXo_a-noEiQaazjEdp5Nlbs51WUg1T1pInQlP6ZG2O4Cr3H-pIcJ2tsKE8NT3gx6I/s400/GEDC0164.JPG" alt="" id="BLOGGER_PHOTO_ID_5720190185138218402" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGNOnpGOauCWNlA1h2Y0vA6_Xg0Ge_WXZQbeJ17GA2Z6YwYlOJbxwUpj8gVvfnUpK2uM_mZgzpXCCZE49XGp9VjvaazEONzXnOfP8OWmiqK8DW9AeInwsWYBjItbvF-KCE01LhSl7neeA/s1600/GEDC0165.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGNOnpGOauCWNlA1h2Y0vA6_Xg0Ge_WXZQbeJ17GA2Z6YwYlOJbxwUpj8gVvfnUpK2uM_mZgzpXCCZE49XGp9VjvaazEONzXnOfP8OWmiqK8DW9AeInwsWYBjItbvF-KCE01LhSl7neeA/s400/GEDC0165.JPG" alt="" id="BLOGGER_PHOTO_ID_5720190750885236226" border="0" /></a><br />This is Matthew with one of his Wish Granters, Kris.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQQojXHSJXhusxW2wqXXAiPuEWdGFL0Jl01LbmHLBPwrdA0QUQ7GohgisnurERFA2GZhOHgTRDWeijy2tjZri1ZBVvVygHfQaolFiLor0QG6ol_n5vXWbjk-De68cEf-8cOQ1M1s-aChk/s1600/GEDC0169.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQQojXHSJXhusxW2wqXXAiPuEWdGFL0Jl01LbmHLBPwrdA0QUQ7GohgisnurERFA2GZhOHgTRDWeijy2tjZri1ZBVvVygHfQaolFiLor0QG6ol_n5vXWbjk-De68cEf-8cOQ1M1s-aChk/s400/GEDC0169.JPG" alt="" id="BLOGGER_PHOTO_ID_5720191096057455010" border="0" /></a><br />And both Wish Granters here, Kris on the left and Nadia on the right. You can see the Wish Kids' stars in the background.<br /><br />After the game, Kris helped Matthew write down his three favorite wishes.<br /><br />He chose:<br />1- A toy (I was SO worried he'd do this, because he doesn't understand the scope of his wish!)<br />2- To meet Mickey Mouse<br />3- To see Mickey's castle<br /><br />Whew! What a relief. On steroids, it's hard to predict what could have happened! For all I know, he could have wished for a lifetime supply of bacon!<br /><br />Here's Matthew and Kris writing down the wishes. I wish I could figure out how to rotate the pictures! But they're still cute.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUzmrq6mEms1FJahd_ktHnq8hwWCrmbWEiCx3qhmBsRR7HRrnw5sgjWVos2mFA44hvIvW6_kA86vp2uwAq9182b-dQbuEjnTudOZzWj7Lh09CT9x2KcCNhGtfd1DldA2pBktv8CWR2Krg/s1600/GEDC0171.THM"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUzmrq6mEms1FJahd_ktHnq8hwWCrmbWEiCx3qhmBsRR7HRrnw5sgjWVos2mFA44hvIvW6_kA86vp2uwAq9182b-dQbuEjnTudOZzWj7Lh09CT9x2KcCNhGtfd1DldA2pBktv8CWR2Krg/s400/GEDC0171.THM" alt="" id="BLOGGER_PHOTO_ID_5720192230424174066" border="0" /></a><br />And here, Nadia and Kris are laughing with him. Probably because he wished for a toy! Right next to his hand, you can see the copper tube he put it in - that's important later.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg74pFe29NCbM1pvKqJMRaU73U9xwezfl1eeTXtyvJTKrpMFIQ8ZlJX9xuaSzPGw-2zmKIgzfe-uJiAaAebpz8VPgkpdOHPnPxWCiTaMQSuZgWG125Hubo7nuxitX-dzZnTvIGs9V1P6Fc/s1600/GEDC0173.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg74pFe29NCbM1pvKqJMRaU73U9xwezfl1eeTXtyvJTKrpMFIQ8ZlJX9xuaSzPGw-2zmKIgzfe-uJiAaAebpz8VPgkpdOHPnPxWCiTaMQSuZgWG125Hubo7nuxitX-dzZnTvIGs9V1P6Fc/s400/GEDC0173.JPG" alt="" id="BLOGGER_PHOTO_ID_5720192770773642242" border="0" /></a><br />He rolled up the paper with the wishes written on it.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpMdMAask5g7-fAUoR29XExCjw6e9j01yN2qnTFzMiDumPAjBWzIm-a2YSpHUmxiEF_EHhimNj1C47ShF_teQ61XUKe4IKSBAahvQQUCQPzjuO9JQ2VxzTodfl1G-5qmfm5ucckuDtaJs/s1600/GEDC0174.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpMdMAask5g7-fAUoR29XExCjw6e9j01yN2qnTFzMiDumPAjBWzIm-a2YSpHUmxiEF_EHhimNj1C47ShF_teQ61XUKe4IKSBAahvQQUCQPzjuO9JQ2VxzTodfl1G-5qmfm5ucckuDtaJs/s400/GEDC0174.JPG" alt="" id="BLOGGER_PHOTO_ID_5720193268270283618" border="0" /></a> And put it in the copper tube, then twisted it shut.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV85BU1b6ypAHwYyUHrteRnH-s9-SbjKKdE0EbsXgDc1s7fSTFXpTNwbTRalhrAS3Dw7hehlG-xM4AJIUyCMIDmL2-_0ts75Qu6ZAdDFm1qfYSVwOWmFlR6ANC533iwh3oC7-AkeymYzI/s1600/GEDC0175.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV85BU1b6ypAHwYyUHrteRnH-s9-SbjKKdE0EbsXgDc1s7fSTFXpTNwbTRalhrAS3Dw7hehlG-xM4AJIUyCMIDmL2-_0ts75Qu6ZAdDFm1qfYSVwOWmFlR6ANC533iwh3oC7-AkeymYzI/s400/GEDC0175.JPG" alt="" id="BLOGGER_PHOTO_ID_5720193627102474786" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWzjqWUrVl5Gq6gzzzRH_ukRblrAk4UaTH7eGb6A-aHqYg-JkrZle5cZgqg29vTW0SanyBP4H09joB8mv4VX4s-M01F9Ck7GEXqSmGSRDKlEoQtQOhbsRDAithh2eRvD1Az5ZWNIPs6ag/s1600/GEDC0176.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWzjqWUrVl5Gq6gzzzRH_ukRblrAk4UaTH7eGb6A-aHqYg-JkrZle5cZgqg29vTW0SanyBP4H09joB8mv4VX4s-M01F9Ck7GEXqSmGSRDKlEoQtQOhbsRDAithh2eRvD1Az5ZWNIPs6ag/s400/GEDC0176.JPG" alt="" id="BLOGGER_PHOTO_ID_5720193748478639330" border="0" /></a><br />Then we went to the Wishing Room in the magical tower. He got to use his key to unlock the door.<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTujQXn3mREJgmJ_8fJqe-sdzeUPn-6E4BlzgKun8Wxx895nZ0QFxD6dPV36g9WgH6jPHgLiqQdU6vc_FmipVZhjSNE-FzqCGYP0W5fSB0miD306i0GVYMtEABBKaFSDGG9VuEg-ZDdUo/s1600/GEDC0178.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTujQXn3mREJgmJ_8fJqe-sdzeUPn-6E4BlzgKun8Wxx895nZ0QFxD6dPV36g9WgH6jPHgLiqQdU6vc_FmipVZhjSNE-FzqCGYP0W5fSB0miD306i0GVYMtEABBKaFSDGG9VuEg-ZDdUo/s400/GEDC0178.JPG" alt="" id="BLOGGER_PHOTO_ID_5720194464403645602" border="0" /></a><br />The Wishing Room is surrounded in color, and magical sounds, with a water fountain in the middle of it. Before he started, they asked us go to around and say what we each wish for Matthew. It was beautiful. We all wished him things like good health, a long life, and getting through his cancer without any scars - inside or out. I cried. I always cry.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggw6GA4ink73XsbSk3MTrIvfR_HhTCcEYOxafHYIswMzrXaLZcqFOibGz2oE7TlLs2uigmH0MF62vOELliVo-buhyphenhyphen2utmu8jXiwbi7WW_X5cuLVj2LmQVkfdS_q2hxVvwJlMdhkPWLiBk/s1600/GEDC0181.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggw6GA4ink73XsbSk3MTrIvfR_HhTCcEYOxafHYIswMzrXaLZcqFOibGz2oE7TlLs2uigmH0MF62vOELliVo-buhyphenhyphen2utmu8jXiwbi7WW_X5cuLVj2LmQVkfdS_q2hxVvwJlMdhkPWLiBk/s400/GEDC0181.JPG" alt="" id="BLOGGER_PHOTO_ID_5720194957886517234" border="0" /></a><br />In the center of the room was a cone without its top. It had an empty circle in the center of it.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLmL6njqbsrPBqXDU00hFmaEk-sBlaqrazJw6VIBSiRwWX-Y8W4DmkHdGxY3iiYj6TfshbyZHXPr7w8OQ9Hle1WwbElal556CSP6LWHgoHbwjdtv7nOImeMWPe80mV3IqUuUtKTU8k_g/s1600/Wishing+Room.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 318px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLmL6njqbsrPBqXDU00hFmaEk-sBlaqrazJw6VIBSiRwWX-Y8W4DmkHdGxY3iiYj6TfshbyZHXPr7w8OQ9Hle1WwbElal556CSP6LWHgoHbwjdtv7nOImeMWPe80mV3IqUuUtKTU8k_g/s400/Wishing+Room.png" alt="" id="BLOGGER_PHOTO_ID_5720198243076957154" border="0" /></a><br />He had to search the room for the top of the cone.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht6JH9aIdiq9dWzByprBg2vhi8ns_iT0cOMYG0gvdde-pHWsW0TjukejdlQCOvLnIidou7ifCyAEL62Qpg-cx-SkwoCb_423NacrckrAVCZlapcK475GTdqIg8viYd7K52xoVqoXOVOw4/s1600/GEDC0190.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht6JH9aIdiq9dWzByprBg2vhi8ns_iT0cOMYG0gvdde-pHWsW0TjukejdlQCOvLnIidou7ifCyAEL62Qpg-cx-SkwoCb_423NacrckrAVCZlapcK475GTdqIg8viYd7K52xoVqoXOVOw4/s400/GEDC0190.JPG" alt="" id="BLOGGER_PHOTO_ID_5720198630315063218" border="0" /></a>Then he fit the copper tube into it.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFwRjl97k0c-OcXNWQwKglZSuufJwLwenQQoD8BM6i3vcd8ogF9EKLoD2kjoFIWGQc7qOkFFq3viXGgVr66R2qQga_TO-TqHM8HEtV7ijIRUdCzHelsj_z4iLgYMapbOyaNXDzGs1RUZo/s1600/GEDC0191.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFwRjl97k0c-OcXNWQwKglZSuufJwLwenQQoD8BM6i3vcd8ogF9EKLoD2kjoFIWGQc7qOkFFq3viXGgVr66R2qQga_TO-TqHM8HEtV7ijIRUdCzHelsj_z4iLgYMapbOyaNXDzGs1RUZo/s400/GEDC0191.JPG" alt="" id="BLOGGER_PHOTO_ID_5720199079929918002" border="0" /></a><br />And fit that on top of the bigger cone.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA7fSaGfjqoDXdy3CPkdPCDI77BTLzmYbC3jttnbUK08a0x4DDwuenEWlN8e1YUPf94_0ctgpzrOCu0Ue9LHT7iVB-FXnE6pjU1n5ciO3VqQwARfuVakH5cDAiPzKWiq-IZ2Kt8gJyoYM/s1600/GEDC0193.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA7fSaGfjqoDXdy3CPkdPCDI77BTLzmYbC3jttnbUK08a0x4DDwuenEWlN8e1YUPf94_0ctgpzrOCu0Ue9LHT7iVB-FXnE6pjU1n5ciO3VqQwARfuVakH5cDAiPzKWiq-IZ2Kt8gJyoYM/s400/GEDC0193.JPG" alt="" id="BLOGGER_PHOTO_ID_5720199497632831538" border="0" /></a>The minute it all came together, magical sounds and music started playing all throughout the room. Kris explained to him that he had just sent his wish off to the Wish Wizard. The Wish Wizard will look at his wishes and let us know if he can grant them. Being the logical child that he is, Matthew wanted to see the Wish Wizard, and he kept looking for him the rest of the night.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEfBL6hFlgI8STlNQyEI_8VsAc8agJQeY8eDM5qXocfwycW1xHajuJC7RK1A6y1l1OYofM5OXg2aoBGr7ki9kC6jRag7-szyGYD5dp3mmXpHLs7-m8368cuSHBLadKD91CvnuxOOvbb9E/s1600/GEDC0194.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEfBL6hFlgI8STlNQyEI_8VsAc8agJQeY8eDM5qXocfwycW1xHajuJC7RK1A6y1l1OYofM5OXg2aoBGr7ki9kC6jRag7-szyGYD5dp3mmXpHLs7-m8368cuSHBLadKD91CvnuxOOvbb9E/s400/GEDC0194.JPG" alt="" id="BLOGGER_PHOTO_ID_5720200621388780882" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjweXZH50GnjU5nx4RizlCYWYN8i6WaE2UzE8Z_rl5q4MEmxlFc3PdUz9R39kzMKakvVKEUxAtLeV9xAvDCZH2H17MpoRlFKjZMNlpn90e1oIB6w4ZSDc0SaJLs399eSCSSOjkvSsQexsA/s1600/GEDC0195.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjweXZH50GnjU5nx4RizlCYWYN8i6WaE2UzE8Z_rl5q4MEmxlFc3PdUz9R39kzMKakvVKEUxAtLeV9xAvDCZH2H17MpoRlFKjZMNlpn90e1oIB6w4ZSDc0SaJLs399eSCSSOjkvSsQexsA/s400/GEDC0195.JPG" alt="" id="BLOGGER_PHOTO_ID_5720200854608979138" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5YdB2okAoZTfrHWEaIQjhxfYPKRX0tmQgrbDj0T5bryTaTMWBbPWdqX0NMlqNG-3f32nhe1u55tPCxGvw9FrdgDzEoxSzIkgeA7b0gy8Ptg2i4-3MpQiNazREjl1lx7CSp_pSNOX1z0s/s1600/GEDC0198.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5YdB2okAoZTfrHWEaIQjhxfYPKRX0tmQgrbDj0T5bryTaTMWBbPWdqX0NMlqNG-3f32nhe1u55tPCxGvw9FrdgDzEoxSzIkgeA7b0gy8Ptg2i4-3MpQiNazREjl1lx7CSp_pSNOX1z0s/s400/GEDC0198.JPG" alt="" id="BLOGGER_PHOTO_ID_5720201081512481266" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuge9tVH27pQHKwcVdCRn0jc-aSmQkY8Os9IKhyphenhyphenESaDRKUExsNXGJHQoD4Cmmvev-yI5cqj7T4C8JTNr9eOyhBL9p4HPIwTsQF2xu-j7ZWrZG9P7y8TW1CZ-YfBGClZ3Bo0A_glNc0jGQ/s1600/GEDC0200.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuge9tVH27pQHKwcVdCRn0jc-aSmQkY8Os9IKhyphenhyphenESaDRKUExsNXGJHQoD4Cmmvev-yI5cqj7T4C8JTNr9eOyhBL9p4HPIwTsQF2xu-j7ZWrZG9P7y8TW1CZ-YfBGClZ3Bo0A_glNc0jGQ/s400/GEDC0200.JPG" alt="" id="BLOGGER_PHOTO_ID_5720201337227340946" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOpazITmWCqRY6AXOtYrWgy-SnkSellAIdlb2WaazbSyXJcDsp-KCHfVZoRokQp0Vsl67GMJ7HLPTIJ7O72kkPLWvoEyfvDpz3R9szfWwUMU0TANoqnhsgF0L68LNC6g9pL6QK3cuqu0c/s1600/GEDC0201.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOpazITmWCqRY6AXOtYrWgy-SnkSellAIdlb2WaazbSyXJcDsp-KCHfVZoRokQp0Vsl67GMJ7HLPTIJ7O72kkPLWvoEyfvDpz3R9szfWwUMU0TANoqnhsgF0L68LNC6g9pL6QK3cuqu0c/s400/GEDC0201.JPG" alt="" id="BLOGGER_PHOTO_ID_5720201584462976338" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilYiunz0V19UIivvx4kjKc5shBh0lnRn4IubK7EELXaTdvtIRWpiO7kX2lt7JzJTukCUlrh0d5iFq9qId0-6ZJkaGXbmY0xyO8xBtBB8ZsOU60KVZxmWP2vzMn5vwb-6FodAcEfO9kR2s/s1600/GEDC0203.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilYiunz0V19UIivvx4kjKc5shBh0lnRn4IubK7EELXaTdvtIRWpiO7kX2lt7JzJTukCUlrh0d5iFq9qId0-6ZJkaGXbmY0xyO8xBtBB8ZsOU60KVZxmWP2vzMn5vwb-6FodAcEfO9kR2s/s400/GEDC0203.JPG" alt="" id="BLOGGER_PHOTO_ID_5720201738905593778" border="0" /></a><br /><br />Then, we went back out and took some pictures of us all together.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuRgCAq4-MiLYM9-11I2w-2LI1Hl_cleogb8HETXBBkPNfiYbfRLsbVqKUxbb23a6zCsphjindvA4yqTvAAwFD-lXI07nl9_YwtR0yEY7ZStxHWNx27-YXmBq6ej0a_O0AiBwOR7kswc/s1600/GEDC0210.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuRgCAq4-MiLYM9-11I2w-2LI1Hl_cleogb8HETXBBkPNfiYbfRLsbVqKUxbb23a6zCsphjindvA4yqTvAAwFD-lXI07nl9_YwtR0yEY7ZStxHWNx27-YXmBq6ej0a_O0AiBwOR7kswc/s400/GEDC0210.JPG" alt="" id="BLOGGER_PHOTO_ID_5720202150243306258" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLwHnnV9WlOEwjxx-4Fmm4Jy0jar87pISmpH0xlQnCbGCP-YKHKGol3cBiNRFe66BaXFVfhazaA1VbhjPw_Nl8hHdwdB3M5rnBaZZjNPTGLis9EmWktKT_cHfRb4Ntd971sExk8wwBp3U/s1600/GEDC0212.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLwHnnV9WlOEwjxx-4Fmm4Jy0jar87pISmpH0xlQnCbGCP-YKHKGol3cBiNRFe66BaXFVfhazaA1VbhjPw_Nl8hHdwdB3M5rnBaZZjNPTGLis9EmWktKT_cHfRb4Ntd971sExk8wwBp3U/s400/GEDC0212.JPG" alt="" id="BLOGGER_PHOTO_ID_5720202432671701906" border="0" /></a><br />Then we went downstairs to have some fresh-baked cookies while Kris helped Justin and I fill out the necessary paperwork.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1W2uByyIjmpDoBuZ1qOi9W04e49LbMB-Ex0qsTXhG1_57r5uU-3BSKSvKZ1tKaOy7m4q7zX7o22r7i97dSLB-xtQoriFEjeQP44o_mk34FYU3CIyUzFSpboiL4H0N6f5oiLrY25WttGA/s1600/GEDC0213.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1W2uByyIjmpDoBuZ1qOi9W04e49LbMB-Ex0qsTXhG1_57r5uU-3BSKSvKZ1tKaOy7m4q7zX7o22r7i97dSLB-xtQoriFEjeQP44o_mk34FYU3CIyUzFSpboiL4H0N6f5oiLrY25WttGA/s400/GEDC0213.JPG" alt="" id="BLOGGER_PHOTO_ID_5720202885570553010" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjedzyVjs9Zm97hZzCJWhxNc8nW9w8bazSZpcWUzNpT-gJf1Y5bHpHgXEPSogYr5V3CbUi5VlmGj_VTVlu4gQWu2dUzb3znbdexDnpGR67pNQgd9Eyeq-YASSzX7hA9HziQ1dzV8dOulmw/s1600/GEDC0214.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjedzyVjs9Zm97hZzCJWhxNc8nW9w8bazSZpcWUzNpT-gJf1Y5bHpHgXEPSogYr5V3CbUi5VlmGj_VTVlu4gQWu2dUzb3znbdexDnpGR67pNQgd9Eyeq-YASSzX7hA9HziQ1dzV8dOulmw/s400/GEDC0214.JPG" alt="" id="BLOGGER_PHOTO_ID_5720203068151057762" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiku6xmu6alcaUuIwrW0DyGavDMua6fe2RN6TngHokjKBuvLtFAr_BHlXK7vz-JC8z-ChUwgm1P4h8oDeD46mtHhiVf9czHfv9vvoapZbvVhBvbu4RSUjcM30Oog5u1cKC19MaCvX4RysQ/s1600/GEDC0215.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiku6xmu6alcaUuIwrW0DyGavDMua6fe2RN6TngHokjKBuvLtFAr_BHlXK7vz-JC8z-ChUwgm1P4h8oDeD46mtHhiVf9czHfv9vvoapZbvVhBvbu4RSUjcM30Oog5u1cKC19MaCvX4RysQ/s400/GEDC0215.JPG" alt="" id="BLOGGER_PHOTO_ID_5720203294409353282" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ25yrczt5C7jqwr8PniTKydtUBs0wBxp-r55bIstSbQG3Ovs9ZsQVCAtixzwgkt0iH0Qcbb9Kpn0H1uRnHN0WYj6okG8f-jeWG84wkrG3uqf3ytY06xqdwKtCc5biLO5xozFAEyFlnOs/s1600/GEDC0216.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ25yrczt5C7jqwr8PniTKydtUBs0wBxp-r55bIstSbQG3Ovs9ZsQVCAtixzwgkt0iH0Qcbb9Kpn0H1uRnHN0WYj6okG8f-jeWG84wkrG3uqf3ytY06xqdwKtCc5biLO5xozFAEyFlnOs/s400/GEDC0216.JPG" alt="" id="BLOGGER_PHOTO_ID_5720203484315159314" border="0" /></a><br />Since he was on steroids, Matthew's attention couldn't be held by anything for very long. Soon enough, he got bored, and started checking out the rest of the room. It didn't take him long to discover a podium with a microphone - his favorite thing in the world! When he was little, in Primary, he would ask me if he could "talk on the talkie talk," then he'd yell into the microphone and pound on the podium. He was so funny. So, with full permission to play around the podium and microphone, he put on a little show for us while we finished the paperwork. Kris helped us with the paperwork, and Nadia played with Matthew and Mikey.<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfoM3p61Dw74L4UwgSU2mO9wEevSUdBaWpJ-A5WjL7MykZmHy1YLIzTCKIzSf-TmiI2IN-2RoWDa42614AwVraz-7Ik8zScPgLE7S10YJK8nBaIg6NAvsO-eNCt-dkOLnBNRVPhV8Jmt4/s1600/GEDC0217.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfoM3p61Dw74L4UwgSU2mO9wEevSUdBaWpJ-A5WjL7MykZmHy1YLIzTCKIzSf-TmiI2IN-2RoWDa42614AwVraz-7Ik8zScPgLE7S10YJK8nBaIg6NAvsO-eNCt-dkOLnBNRVPhV8Jmt4/s400/GEDC0217.JPG" alt="" id="BLOGGER_PHOTO_ID_5720204169876620178" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNyVuHBpIhcY9hSJTnEeCwXiJbBVL1zvZvc3HsEhnPz6qDZil9M-Af0ZWckQ-mnZyy-_CWLgI3hMei18NtaDlYgXuYVdkQaDFj9fbLKmjAEgz4-V7DtTvpIlX-7_gSkZZqryWZUmRgLS8/s1600/GEDC0218.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNyVuHBpIhcY9hSJTnEeCwXiJbBVL1zvZvc3HsEhnPz6qDZil9M-Af0ZWckQ-mnZyy-_CWLgI3hMei18NtaDlYgXuYVdkQaDFj9fbLKmjAEgz4-V7DtTvpIlX-7_gSkZZqryWZUmRgLS8/s400/GEDC0218.JPG" alt="" id="BLOGGER_PHOTO_ID_5720204468257369698" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiepbkn0aabdbNNMUd4_0W5KF5o-IEZjrbhTTX4Y2nrydNck4ZqPE4SaAKtgeW34Ic1in8FJrvQeTU7AoGd62eLDxhfVCtVSzGecaEnxg1ylLEwom_4RvzbQiuZJU4DgaELW61DllTmyFY/s1600/GEDC0219.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiepbkn0aabdbNNMUd4_0W5KF5o-IEZjrbhTTX4Y2nrydNck4ZqPE4SaAKtgeW34Ic1in8FJrvQeTU7AoGd62eLDxhfVCtVSzGecaEnxg1ylLEwom_4RvzbQiuZJU4DgaELW61DllTmyFY/s400/GEDC0219.JPG" alt="" id="BLOGGER_PHOTO_ID_5720204781306261138" border="0" /></a>Sweet Miss Caroline kept taking pictures the whole time.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYg_PD7lm0ESSMqpqfu-BzDR52hUok-O7jZYDcNR3_2DR9SQQzqdIyD2ebvSwbCVJOlEV4OxcLgvXMlmue0NPkkU7ewxp_KkAtiShr7f7no4MLD8GW3NJpIQzWrZM233VqhNNFyS2GI6s/s1600/GEDC0220.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYg_PD7lm0ESSMqpqfu-BzDR52hUok-O7jZYDcNR3_2DR9SQQzqdIyD2ebvSwbCVJOlEV4OxcLgvXMlmue0NPkkU7ewxp_KkAtiShr7f7no4MLD8GW3NJpIQzWrZM233VqhNNFyS2GI6s/s400/GEDC0220.JPG" alt="" id="BLOGGER_PHOTO_ID_5720205014874032914" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0pTSQz4vGuKBDHFpnqID8c8Vs_V3NHFR5ts1ItxXQqjrew8pY09h1AKnM-xVplwh50FhzlrYIxNk87SlaZI5RDIJWRL6WtE_hBPDGlhgyzcNFLWvULEVcZW9JADXYCtlXH8Oxe3bH60o/s1600/GEDC0221.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0pTSQz4vGuKBDHFpnqID8c8Vs_V3NHFR5ts1ItxXQqjrew8pY09h1AKnM-xVplwh50FhzlrYIxNk87SlaZI5RDIJWRL6WtE_hBPDGlhgyzcNFLWvULEVcZW9JADXYCtlXH8Oxe3bH60o/s400/GEDC0221.JPG" alt="" id="BLOGGER_PHOTO_ID_5720205376084128930" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqOIW3wxm_WnSzgjl9ZM_4izcFeZ05V3GqVZEtRjT5tFaigB_n2pYJp_kmcuJWv0_CHADS4dj8ujpNWeg10CJRkzf2jERq6ZJsa9YjK2nAjserCs7Zavi298k3gabMMuutMU1mrJnpx94/s1600/GEDC0222.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqOIW3wxm_WnSzgjl9ZM_4izcFeZ05V3GqVZEtRjT5tFaigB_n2pYJp_kmcuJWv0_CHADS4dj8ujpNWeg10CJRkzf2jERq6ZJsa9YjK2nAjserCs7Zavi298k3gabMMuutMU1mrJnpx94/s400/GEDC0222.JPG" alt="" id="BLOGGER_PHOTO_ID_5720205562421713618" border="0" /></a><br /><br />It was truly a magical night, and I'm glad I found the time to write about it today while the details were fresh. They asked us what dates we wanted to go to Florida, and we chose any week in June except the first week, which will be a steroid week for Matthew.<br /><br />They said that when they send kids to Disney World, they always stay in a resort within Disney World called Give Kids the World. It's a whole town dedicated to kids who are there through programs like Make-A-Wish. It's made with sick kids in mind. There are all sorts of foods available around the clock. The mayor of the town is a Rabbit, who comes and tucks the kids in at night. There's a swimming pool that looks like a beach. Each family gets their own villa with a washer and dryer and a kitchen.<br /><br />They give you passes to Disney World, Sea World, and Universal Studios, and you can ride the light rail train, but they also give you a rental car.<br /><br />It's a seven day, six night trip, so we'll have plenty of time to check out all three parks, and we may take a day to go to the beach.<br /><br />When I think of all that Matthew has been through this year, it sometimes weighs really heavy on my heart. He's never going to be the same. He's faced his own mortality, and he understands that on some sort of a basic level. All of my kids have had this thrust into their lives, and all four of them are changed. It's an awful lot of cold, hard reality for any kid to deal with. I'm really glad that they will get to step outside of their "normal" for a week and just play, and pretend. I think it will lift each one of their spirits. Justin and me, too.<br /><br />I will never be able to express how deeply touched I am by the gift the Make-A-Wish is going to give to us. I am filled with gratitude for all of the volunteers and donors who will make this trip happen for us. Now, we have something to look forward to.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com4tag:blogger.com,1999:blog-4619683350015395525.post-26499237774072475742012-03-14T08:29:00.004-07:002012-03-14T16:02:48.832-07:00MaintenanceWell, we made it. Out of a very long, dark tunnel. And into a longer, but maybe less dark tunnel. It'll take time to know how we all adjust. I've seen some kids do fantastic with it, and some who really struggle, even more than they did during the other phases. We are still in active treatment, it's just different now. Mostly done at home.<br /><br />The Pros:<br /><ul><li>He only has to go in once a month, unless he is having problems. He doesn't have to have his Port accessed any other time - so only one poke a month, as long as all is well.<br /></li><li>Only one lumbar puncture every 3 months, plus we talked to his doctor about a different method of sedation, which would put him out enough to do the procedure without using general anesthesia. It would also mean we can be in the room when they do the lumbar punctures, which I think I would like better. They also come out of it better this way.<br /></li><li>In the near future, we should be able to count on a relatively steady ANC of 1000 (this is still immune suppressed, but he would at least be able to fight off his own body's bacteria). This means he'll be able to go to church again, and possibly preschool or daycare. Also, we can travel this summer.<br /></li></ul><p>The Cons:</p><ul><li>He has to take pills every single day for the rest of treatment, which we found out yesterday will end in September of 2014. A month sooner than I thought.<br /></li><li>5 days a month, he'll take steroids. This is also going to continue through all of Maintenance - until September of 2014. I know I've said before how much I hate steroids. He started them last night, and already, he's crabby and emotional. It's going to be a long week.</li><li>On Thursdays, he'll take an additional medicine, and has to take 6 pills to get his dose. This means that on the Thursdays that are also steroid days, he will take 10 pills.<br /></li><li>He will only get a CBC once a month, which will make me a basket case because I'll never know his ANC. I'm going to have to learn to trust that he's okay, unless I have reason to believe that he's not. That's easier said than done when your child is being treated for cancer.</li></ul><p>So, here are the specifics, for those of you who want details. He is on a study for his treatment. By participating in a study, you get the most current treatment available. For Matthew's study, they left almost everything alone, so the kids receive the current standard treatment plan. The exceptions are that during Induction (that was the very first 28 days), they give some extra blood and extra bone marrow for scientists to study, and then during Maintenance they took the standard treatment and tweaked it with a little bit more of each medicine and a little bit less to see if they could get a better cure rate with those little tweaks, or if they could do without some of the harsher drugs to lessen side-effects. Each child who participates in the study is randomized among four arms of treatment; A,B,C, or D. You don't know how you've randomized until the day you start Maintenance, even though you agree to it before you start treatment. You have to agree to it again before they randomize you.<br /></p><p>So, we had some long-awaited news yesterday. Matthew randomized on Arm A for his study. Arm A is the current standard protocol. Tried and true - this is the one they know works. I feel good about it. At one point in time, I hoped he'd get one where they had tweaked the medicine to be higher doses, but I've seen some kids struggling with it. So, from a quality of life perspective, I feel better about this.<br /></p><p>About a month ago, I couldn't handle the pressure of this upcoming stress, and I finally laid it at the Lord's feet, which I should have done months sooner. I asked Him to make sure Matthew got into the arm of the study that would be best for him, and then I let go of my worry about it. I feel like that was the right thing to do, and I feel like Arm A is really, truly where Matthew is supposed to be.<br /></p><p>The following is copied from the paperwork they gave me yesterday: "The purpose of Maintenance phase therapy is to try to keep the Leukemia from coming back. Each Maintenance cycle will last 12 weeks (84 days) and is repeated until 2 years from the start of Interim Maintenance I for girls and 3 years from the start of Interim Maintenance I for boys."<br /></p><p>His doctor explained to us yesterday that early in Leukemia treatment, they found that they could get rid of the cancer quickly, but without continued treatment, it would just come right back. So, each phase of treatment was developed, and has been fine tuned over many years, to prevent the return of the Leukemia cells. As I understand it, the 4 phases of treatment that Matthew has been through since he achieved remission were necessary because the bones needed to be "reset." They needed to be retrained to make good blood again. The Maintenance phase of treatment, however, is more about preventing the return of the cancer. They target what she called "sanctuary sites" to be sure there are no lingering cancer cells lying in wait. If there were cells in his spinal fluid or his testicles, he would relapse. They have found that boys often relapse because the testicles are such a strong sanctuary site, so boys are in treatment to prevent that for a year longer. Most relapses happen near the end of Maintenance, or just after the child has gone off treatment all together.<br /></p><p>Relapse is the scariest word I know. It is totally the stuff of my nightmares.<br /></p><p>Anyway, on Arm A, the treatment is as follows:</p><ul><li>His treatment will be done in "courses" of 84 days, followed by a break for count recovery. To start the next course, he will need to have at least an ANC of 750, and cannot have any current major illnesses (RSV, Flu, Chicken Pox, etc...).<br /></li><li>On day 1 of each course, he will have a lumbar puncture done, and they will inject Methotrexate into his spinal fluid.<br /></li><li>Once every four weeks, he will have a check up with his doctor, and he will receive an IV dose of Vincristine.<br /></li><li>For five days out of every 4 weeks, he will take Dexamethasone (a high dose of steroids). This will be done in conjunction with the Vincristine. They work best together. When he takes this drug, it will be 2 doses a day. 2.5 mg in the morning, and 2 mg at night.<br /></li><li>Every Monday and Tuesday, he will take Septra, morning and night. This is the antibiotic he has been taking all along, which prevents a very specific type of pneumonia often seen in immune suppressed people. He will continue taking Septra for 3 months after the end of his treatment.</li><li>Every day, he will take Mercaptopurine, which is called 6MP for short. This is in the form of a pill, which needs to be taken on an empty stomach and without dairy products. This medicine is dosed based on Matthew's height and weight. They started him out on what they call 100% of his dose. If his ANC holds steady at 1000, he will stay on the 100% 6MP dose. If the ANC tanks (which seems to be fairly common), they will reduce his 6MP to a 50% dose until his counts recover, and then work their way back up to 100% over time, if possible. The goal is to always have an ANC of 1000. If it stays too high, he'll get more 6MP. If it stays too low, they'll have to permanently adjust it lower, although it will change over time, as his height and weight increase with age.<br /></li><li>Every Thursday, he will take 6 Methotrexate pills, equaling 15 mg. These could possibly cause the side-effect of mouth sores, which are far more painful than they sound. They are easily the most painful part of ALL treatment, and often kids get put onto a Morphine drip to manage the pain, and end up being fed through a tube because they won't even open their mouths. Luckily, Matthew has never had mouth sores, even with the much higher doses of Methotrexate he has received via IV. The Pharmacist told me yesterday that Septra and Methotrexate combined can build up in your system, causing side effects over time. At the time, I was thinking of skin problems, which I've seen a lot of kids go through, but I bet mouth sores are another possibility. I hope and pray that sweet Matthew never has to go through it.</li></ul><p>So, as you can see, this course of treatment is still hard. I know I've made it sound like it's going to be this huge relief, and in many ways it will, but Matthew is still in active treatment, for sure. It will be wonderful to have fewer visits. We'll have so much more time to do the things we want and need to do. I'm looking forward to tons of time outside this summer - at the park, on play dates, taking walks. I just want to get him out of this house!<br /></p><p>I hope we settle into this next "new normal" quickly, and get on with our lives. Once again, thank you all for the amazing support you provide. We feel lifted and carried by all the prayers.<br /></p><p><br /></p><p><br /></p>Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com2tag:blogger.com,1999:blog-4619683350015395525.post-26306034167081281402012-03-08T09:32:00.003-08:002012-03-09T09:42:01.153-08:00CroupI was told by two of my most amazing friends on Wednesday that I was required to blog yesterday. I suppose it really has been too long. 10 days now. In all fairness, nothing really happened until Tuesday night, so I'm not that far behind. I started this post yesterday, but Matthew was really not feeling well, and needed some extra attention.<br /><br />Matthew's first week of break was fine. You could tell the methotrexate was getting to him. It makes sense - it was the highest dose of IV methotrexate he ever received. He got a little nauseous 2 days later, which is rare for him. One blessing for us is that the chemo never really made him sick, except the doxorubicin. So, the little bit of nausea wasn't that big of a deal. He had a little bit of pain that day too. All of the above was very manageable, though.<br /><br />You can also tell when the chemo wears off. He has more energy, and wants to play. He's tired of being cooped up in the house. I can't wait to get him involved in SOMETHING, whether it be play groups, pre-school, head start, or all of the above! He cried this morning because he wants to go back to school so bad. (We used to call his daycare 'school') All I could really tell him is that some sicknesses go away pretty fast, like when you have a cold, but cancer takes a really long time to fight. Poor kid.<br /><br />He's starting to understand the depth of it. He asks about death more than I know what to do with. I need to facilitate a conversation with him and Rachelle, the child life expert at the clinic, about it. She always finds amazing ways to help him deal with the emotional struggles he's facing. It breaks my heart that I have to teach my four year old about death because he understands that he is facing his own mortality. I've been a mother for 17 years, and this is totally uncharted territory.<br /><br />Tuesday, things got particularly rough. He has had low-grade fevers pretty much every day for about a month, now. Ranging from 99.5 up to 100.5. As long as they stay below 101, and they don't stay above 100.4 for more than an hour, we aren't supposed to worry about them. That's easier said than done, though. It reminds me too much of the month before he was diagnosed. I brings scary thoughts about what's happening right now to mind. But they check his blood every week, and his doctor said the fevers are now, and probably also were then, just an indication that his body is working hard.<br /><br />Well, Tuesday, his fevers stayed above 100 more often than not, but never went high enough for long enough to take him in. He also started sneezing quite a bit, and had a runny nose, but it was clear, which still means no infection. We were sort of on alert, but still didn't need to take him in. Wednesday morning at about 2am, Matthew came to the bottom of the stairs with a croupy cough.<br /><br />I've dealt with croup with every, single one of my children. Many times. I've only been scared by it once before, and that was the first time Alaina had it. The sound of that cough can be scary. But with Matthew, it wasn't the sound of the cough that scared me, it was the way he was breathing in-between coughs. He couldn't draw a full breath. He was struggling to breathe at all. He looked pale, and terrified. It scared me. A lot.<br /><br />Thankfully, my husband is amazing, and keeps his head during an emergency. He took Matthew into a steamy bathroom while I called the on call oncologist. She said to take him to the ER. Then a couple of minutes later, she called back to say that, based on his current good counts, if we could get the breathing under control, we could wait till morning. But, after 10 minutes or so in the steamy bathroom, he was still having a hard time, so we got dressed and went to PCMC. It was an icy snowstorm out there, and awful to drive in. Once again, I thank heavens for my amazing husband, who can drive fairly fast safely in the snow and ice.<br /><br />Going out into the cold air also helped improve Matthew's breathing, but still not enough. By the time we got to PCMC, he was no longer struggling, but was still breathing fast and wheezing.<br /><br />They confirmed that he has croup, and explained that it causes the windpipe to swell. In an adult, that wouldn't be such a big deal, because our windpipe is proportionately larger than a child's, but young children can struggle to breathe when they have croup. So, they gave him steroids to decrease the swelling. And we all know how much we love steroids in this house.<br /><br />I have to say, though, never before have I seen so quickly what a miracle drug they are. It was the same exact drug he gets in his cancer treatment, Dexamethasone. Also a similar dose. And it resolved the situation almost immediately. They prescribed a second dose for the next night. He has had no more croupy cough and no more breathing issues. Just a dry cough during the day.<br /><br />Thank heavens for modern medicine. And even though I loathe to say it, thank heavens for steroids.<br /><br />I thought for sure, he was going to be admitted to the hospital. I was so relieved when they sent us home.<br /><br />The most interesting thing about this ER visit was the doctor. I knew that I recognized him, but I couldn't place him. You could tell he was also trying to place us. Justin is the one who knew - and I think he knew from the beginning. This is the doctor who saw Matthew in the same early morning hours on July 12, 2011. Matthew had been sick with an infection in a salivary gland in his cheek and had swollen lymph nodes down his neck for a month with an accompanying fever. This doctor was the first person to tell us he thought our son had Leukemia. He drew us a picture of a bone on a paper towel, and explained what the different types of blood do, and why it was such a problem that Matthew had no neutrophils. He admitted Matthew to the ICS for further testing based on the fact that he had an ANC of 0.<br /><br />What a weird, full circle moment to happen during the week before Matthew was to begin Maintenance.<br /><br />He was really nice, as he was the first time. He was glad Matthew was doing well. It was good to tell him he was right, because Matthew didn't present like a normal Leukemia patient, and this doctor took a chance and went with his gut to find us an answer. I have always been grateful for him.<br /><br />After we went home, it took us a full day to catch up on the missed sleep. Then another day for Matthew to get over the emotional side-effects of the steroids. But now, all that's left is some dry coughing during the day. Certainly not the disaster it felt like in the middle of the night on Wednesday morning.<br /><br />Monday's lab results:<br /><br />White Blood Count: 2.7<br />Hematocrit: 32.1<br />Platelets: 261<br />ANC: 1290 (They went UP from last week - and we fully expected him to be neutropenic for a few weeks!)<br /><br />He's such a rock star.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-50724654257545919572012-02-29T08:42:00.001-08:002012-02-29T13:00:05.744-08:00Maintenance, Here We Come!Well, yesterday was Matthew's last chemo before Maintenance. Although it feels rather anti-climactic, it really is something to celebrate. I hesitate to get my hopes up because the first few months of Maintenance can still be pretty rough - in some cases even rougher than some of the phases. But this is the beginning of the end. A really LOOOOONG end (from now until October, 2014, to be exact), but the last phase nonetheless.<br /><br />This is what we've been looking forward to. This was the light at the end of the very, very dark tunnel. Now, we'll have a new, less dark tunnel to get through. But we're looking forward to the positive changes we'll be able to make.<br /><br />I grilled Matthew's doctor for a long, long time yesterday. He sort of has two doctors. His main doctor, Dr. Afify who is a certified oncologist, and his Fellow - which is sort of like a student doctor, but not quite the same. She has finished all of her college, and has done a residency in pediatrics, but to work in such a highly specialized field, like oncology, you have to then go through a fellowship, which is three years. Her name is Dr. Jensen. I will always have a soft place for both of them in my heart. They saved my baby's life. We see a lot of different oncologist when we go in, because Dr. Afify is only in the clinic on certain days - some days she works in ICS (the immune compromised unit) instead. And she also travels quite a lot. But we almost never go without seeing Dr. Jensen. Not every patient has both an oncologist and a fellow assigned to them. I feel very lucky that we do.<br /><br />I love Dr. Afify and her deep wells of knowledge and experience with pediatric cancer. She has worked in this field for many years, and in more than one country, which I believe gives her a unique perspective. And I love Dr. Jensen because she's so new to oncology in particular, and she's passionate, and she studies like crazy. She studies Matthew like crazy.<br /><br />Yesterday, we saw Dr. Jensen, but not Dr. Afify. We saw another oncologist, who I was familiar with, but whose name I can't remember. He's a nice guy, and smart. I remember him from other appointments. But We only talked for a few minutes, because I had already discussed everything I needed to discuss with Dr. Jensen.<br /><br />I had a long, and much needed talk with Dr. Jensen. My appreciation for her was increased, if that's possible. She is a fountain of knowledge, and she is committed to doing this to make a difference with her life. It occurred to me yesterday that in such a specialized field, you can't really decide where you want to live and then look for a job. You find a job and then move there. She told me she hopes to stay in the Western US because that's where her family is. What a strong person to leave her family like that, and go where the fellowship presented itself for work she feels passionately about. Especially knowing she might never be able to "go home" again.<br /><br />Anyway, I totally digress. Suffice it to say I'm super grateful for the sacrifices that doctors make so that they can care for my child.<br /><br />Dr. Jensen told me yesterday (not for the first time) that she has a soft spot in her heart for Matthew. She said that he was one of her first cancer patients. I appreciate the love she feels for him. It makes me feel like we have someone extra fighting for him. Our talk was great. She answered a ton of my questions yesterday, and she calmed a ton of my fears.<br /><br />Here's the lowdown on what I could glean about what's coming next.<br /><br />His next appointment is scheduled for two weeks from yesterday (March 13). She isn't necessarily expecting him to be ready to start Maintenance at that point, though, because his counts are trending down right now, and since his dose of chemo was bumped up, that will contribute to driving the counts down. It'll probably take him a few weeks to recover, which is what they expect. So, we'll have Home Health get CBC every Monday until his ANC reaches 750 (it was 1000 yesterday - it will go down before it goes back up).<br /><br />When he comes for his first appointment, he will get IV Vincristine (I think..) and IT (Intrathecal - in the spinal fluid) Methotrexate. Then he'll start taking Dexamathasone (steroids) for the following five days, along with 6MP pills daily and Methotrexate pills on the weekends (I think that's how it works, anyway...). This is where he will be joining a study. They are testing to see what tweaking doses during Maintenance does for the survival rates. Hoping to find ways to either up the rates or decrease the meds. It's a pretty new study, but I have at least three friends in the mom's group whose kids are already on it. There are four arms on the study, and I don't fully understand them all, but one of them is the current standard protocol, two of them add extra doses of certain drugs, and one of them has fewer IV and IT chemo treatments - and maybe fewer steroid pulses, I'm not totally sure. They choose your arm at random. Like a lottery. They call it randomization. We'll find out how Matthew randomizes at our next appointment. All of my friends so far have randomized in the most medicine category. I have mixed feelings about them all - if he gets the most meds, it feels like he has the best chances, but that might not necessarily be true. If he gets the least, Maintenance will be a lot easier on him, but it could decrease his chances - again, not necessarily. That's what they're studying. I can only pray that the Lord knows what Matthew needs, and make sure he gets the right arm of the study for him.<br /><br />I asked Dr. Jensen about daycare, head start, and vacations. She said we need to give it a couple of months. He will need a few weeks right now to recover, and then stabilizing all those meds during maintenance can take a while. We'll revisit those things then.<br /><br />One of the concerns that has risen up is a weird one. I don't want to sound ungrateful, but it feels like the chemo hasn't had enough effect on him. Sometimes, it's like he barely notices it happened. He never throws up from it. His counts are usually surprisingly good. When he fights off an illness, his body raises his ANC on its own and he is able to fight it off on his own. I know it's weird to be concerned about that, but it feels like maybe it isn't effective enough. Other kids get a lot sicker from this stuff, and spend a lot more time in the hospital. In comparison, it sometimes feels like Matthew is barely fazed. Maybe he isn't getting enough, or something... you know? Anyway, Dr. Jensen said that this could be a concern, and sometimes it is, but they study Matthew's blood often. They check something called a differential, which tells them how mature or immature his white blood cells are. This made her confident that he's okay. I don't fully understand that, but I do trust her, and she knew what she was saying. It sounded like she had already addressed the concern for her own knowledge, and she knew Matthew's blood was okay.<br /><br />Another thing that's been tough has been Matthew's bone pain and fevers. It seems like he has a low-grade fever every day. 99.5-ish. This was also true before he was diagnosed. He had a fever every day for a month. So it scares me a little. She said that then and now, his body probably elevates its temperature when it's working hard. It's nothing to worry about unless we start to see other symptoms accompanying the ongoing low-grade fever.<br /><br />I asked her when he'll have another bone marrow aspirate, and she said he won't unless there's a reason to suspect the cancer may have returned. I was surprised they don't check it throughout treatment. But, the last time he had one was August, when they declared him in remission. Everything else after that is about "resetting the bone marrow." That means I need to really learn to just have faith in the process. That's hard, but I can do it.<br /><br />So, sorry for the information overload! We have so much support, and I really appreciate everyone for all the good thoughts and prayers.<br /><br />For now, it looks like it'll be a few weeks of our favorite game, Hurry Up And Wait.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-74948418473534008592012-02-21T08:04:00.002-08:002012-02-21T08:28:06.486-08:00Sleepless NightsI think the end of each phase of treatment becomes really hard on Matthew - and therefore all of us. It seems like with each phase, the effects of the chemo build more and more upon each other and before they are allowed to wear off, there's more chemo. In addition to that, his current phase involves escalating doses - higher each time we go in. So, I think it's getting to him.<br /><br />He's had 4 appointments in this phase, and will have one more next Tuesday. Then he'll get a break before we move on to Maintenance.<br /><br />He's getting to the point where I can tell all that build up is getting hard on him. He tries so hard to play all day, but by afternoon, he's always so worn out, and he gets super grouchy and whiny. Sunday, Justin made him lay down and watch a movie. It was the best move he could have made. Matthew isn't used to needing rest like that, but the truth is that he needs it. He may seem to be handling this like a rock star, but he still has cancer, and it's harder on his little body than he wants to admit.<br /><br />He's losing weight again, which always concerns me. I'm lucky if I can get him to eat 1,000 calories in a day - it's usually more like 5-800. He's looking pretty thin, but not emaciated yet. I'm hoping his appetite and weight will bounce back during his upcoming break.<br /><br />He has leg pain, and pain at the top of his feet. I've had to give him pain medicine more regularly than I like. But the most important thing is to help him stay comfortable.<br /><br />He's been sleeping in our bed at night. He goes to sleep in his bed, and then joins us later in the night. He tosses and turns a lot. Sometimes almost violently. The other night, he was whimpering in his sleep, and I couldn't get him to answer me when I asked if he was in pain. I just gave him the pain medicine, hoping it would help him. When he finally settled down, I couldn't sleep. There are always so many scary thoughts going through my head. I just laid there and rubbed his head for a long time. Eventually, I drifted off to sleep again, but it was much, much later. The last few nights have been like this, but that one was the worst. Matthew, Justin and I are all really tired this week. I'm anxious for this phase to be over with, yet I'm still nervous about Maintenance.<br /><br />One more week to go. We're now counting it down in days.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-13664770618649275692012-02-16T10:43:00.000-08:002012-02-16T11:40:15.881-08:00So Many Organizations!I spent some time this morning and signed my kids up for different organizations that will help them. It's so wonderful that there are so many different organizations out there that want to help our family in different ways.<br /><br />Most of you already know that we're members of <a href="http://www.hopekids.org/">Hope Kids</a>. Hope Kids is an amazing organization that gives family's fun outings to do on a regular basis. They told me that Justin and I can use it for Date Night, Alaina and Allison could go to an activity just to get out. We could do Daddy Daughter Dates, or Mommy Son Dates, or the whole family. However we want to mix it up. It's for the whole family, because cancer affects us all. My sweet friend has a son who is fed through a tube. He has a lot of physiological issues that prevent him from eating normally, and also his lungs aspirate often, putting him at risk for pneumonia. She is also a member of Hope Kids, and we decided the other night that we could also use it for a girls night out. I totally love Hope Kids. A lot.<br /><br />Today, I signed Mikey, Allison and Alaina up for <a href="http://supersibs.org/">Supersibs</a>. Through Supersibs, my kids will get special packages in the mail. They will be recognized for what Matthew's cancer has put them through. I loved this quote from their website:<br /><br />The brothers and sisters of children with cancer are truly the “shadow survivors”. Though they do not experience cancer directly, they are impacted in ways that drastically change their lives. Their struggle has been largely unrecognized and unsupported – grief from the loss of childhood as they knew it, loss of routine, affected friendships, a new definition of “normal”.<br /><br />Bravo, Supersibs. I couldn't have said it better myself. I can't wait to see what they send to my 3 little warriors.<br /><br />The most exciting phone call I made, though, today was to<a href="http://utah.wish.org/"> Make A Wish</a>. Matthew is signed up now to Make A Wish, and they'll grant it. It's a really big deal. He is thinking he wants to wish for a trip to Disney World (to meet Mickey Mouse on the beach =)), but we'll see what happens when he understands his options a little bit better. In the meantime, they treat the kids like royalty. They have parties a few times a year, and they do all sorts of things to honor them. He gets to make his wish in the Wishing Place, which is a building designed to make the act of making his wish as magical as possible. The spaces inside are filled with stars, and colors, and child-like magical settings. To read more about it, click <a href="http://utah.wish.org/about-us/a-wishing-place/inside-a-wishing-place/public-spaces/">here</a>. On the left side of that page, you can see more options to see what there is inside.<br /><br />Each child who makes a wish leaves a star behind. It's a beautiful legacy binding us together as families who have something awful, yet powerful in common. I'm fighting tears just thinking about it. I can't wait for him to experience all that Make A Wish has to offer.<br /><br />One thing is for sure, we needed a little bit of uplifting this week. I'm so glad these things are out there to help us. You really don't understand how much this kind of a daily grind can wear on you until you're in the thick of it. These kinds of things are the best way to blow off some steam! I can't wait to see what Matthew's wish is!Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-72584551537150208192012-02-15T07:57:00.001-08:002012-02-15T08:37:03.893-08:00The Smell of a Child's HairNot long after Matthew was diagnosed, I started to map out when he would lose his hair. It's probably the most outwardly obvious side-effect of cancer treatment, and coming into this world from the outside, it's the one you think of first - followed at a very close second by vomiting.<br /><br />Interestingly enough, Matthew only got that sick to his stomach for 3 weeks of his treatment. The doxorubicin weeks. Those were awful.<br /><br />But he lost his hair twice. The first time was about 5 weeks after his diagnosis. I remember cuddling up to him one day and smelling his hair. I was sad that he would be losing it, not because of appearances, but because I love the smell of his hair. All of my kids have their own hair smell. It's always a comfort to me. I remember that moment crystal clear. I realized I wouldn't have that comfort through this nightmare, and wondered how I could possibly do without it.<br /><br />Maybe that sounds stupid, because my poor boy had to go through months of baldness, which he didn't want. I just didn't struggle so much with the visible part of it, because he's a boy, and short or no hair is really kind of okay for a boy. If one of my girls had lost their hair at this age, I would have been so much more sad about the visible side of it, but with Matthew, it was all tactile for me. I loved playing with his hair, too.<br /><br />It's interesting how it morphed, though. The whole time his hair was gone, I never noticed the lack of his hair-smell. In fact, I loved to rub his bald head. It reminds me of a brand new baby's head.<br /><br />His hair is coming back now.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6U9B9ZB48Mv5xz22lufbCWRZLjUADhl-Y1d8sz0ijlA5OeoTPwhVgeJdj2BAm9LAox5u-FBEfY_ayLYDTsSHi0AVhzwUn-lGroDaUZJV67lmVQZ4u-3i74BlHzLolteC9Z8GsTqPzmo/s1600/Matthew%2527s+Hair.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6U9B9ZB48Mv5xz22lufbCWRZLjUADhl-Y1d8sz0ijlA5OeoTPwhVgeJdj2BAm9LAox5u-FBEfY_ayLYDTsSHi0AVhzwUn-lGroDaUZJV67lmVQZ4u-3i74BlHzLolteC9Z8GsTqPzmo/s400/Matthew%2527s+Hair.jpg" alt="" id="BLOGGER_PHOTO_ID_5709396506650270434" border="0" /></a><br />It's so dark! And it's super soft - like a brand new baby's hair.<br /><br />Well, last night, I was cuddling with him, and noticed that his hair-smell is back! It was such a comfort to me! I'm glad that his bald head was comforting to me, rather than sad and scary - like I would have expected. But I'm even more glad that his hair is coming back, and it still smells the same, even though it looks and feels different.<br /><br />I've heard that once the hair starts coming back people stop being careful. I can see that - because the "cancer" look goes away. It seems that will be our next "new normal." And for much longer than the current one has lasted. He'll be in treatment until at least October of 2014, and his counts will remain relatively low during that entire time. They try to always keep the ANC at 1000. So, we have to learn to trust that he will be safe, and we have to accept that it's worth the occasional stay at the hospital in order to allow him to have a life again. And we have to learn to speak up even more about hand washing and germs because when his hair comes back, people will think about it less, but he will still be at risk just as much.<br /><br />But for today, I'm content enjoying the smell of my child's hair.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-62347645201704013452012-02-11T18:17:00.001-08:002012-02-13T11:06:56.538-08:00Routine ER VisitFunny, but I'm starting to understand what the routine is for Matthew when he goes to the ER. He was there Friday, very early in the morning, for a fever. I didn't realize until the next day that maybe people don't understand why a fever is such a big deal. One of my bosses said, "Can't you just give him Ibuprofen?"<br /><br />I realize maybe I never explained this before. So, I'll break it down. Because Matthew's immune system is so severely compromised, he is not properly equipped to fight off an infection. Any time there is a fever, that means the body is fighting an infection. So, when he gets a fever (it has to be 100.4 for at least an hour, or anything over 101.0) we take him up to the ER and he gets IV antibiotics, along with fluids. The dose of IV antibiotics is good for 24 hours.<br /><br />Even if he doesn't have a fever, Tylenol and Ibuprofen are off limits all the time. The reason is that they can mask a fever, and since he can't fight infection like the rest of us, we need to know as soon as possible when he's fighting an infection. A masked fever could mean a costly delay in treating infection, and infection is the leading complication for Leukemia patients. It can be deadly.<br /><br />So, we take fevers very seriously. And we take the no-Tylenol-no-Ibuprofen rule very seriously.<br /><br />But back to the routine ER visit. I realize that sounds like a bit of an oxymoron, but I speak the truth. 3 times, we've done this now. Once Matthew has a qualifying fever (see above), I call the on call oncologist (say that 3 times fast) and let them know. They tell us to go to the ER, and they call the ER and let them know we're coming. While we drive, they are cleaning and sanitizing a triage room so that Matthew won't have to wait in the waiting room with kids who potentially have contagious illnesses. He comes in wearing a heavy duty mask on his face, and we sanitize our hands. They check us in right there at the desk, and then they take us back to the triage room. If there is a super long wait, this is where we will wait. It's our version of a waiting room.<br /><br />Once they have taken Matthew's weight and vital signs, they move us to a regular ER room. Here, we always, without fail, become a teaching case. The resident and attending doctors come in, sometimes separately, and tell us the same thing - that they will take a CBC, give him IV antibiotics and fluids, and if his ANC is below 500, they'll admit him but if it's over 500, they'll send us home. Our nurse is always nervous, and her hands always shake as she accesses his port. (Friday it took 3 pokes. I was about to ask for another nurse) I am usually patient with this because I understand most nurses don't access a port on a regular basis. But sometimes, it becomes bothersome, to say the least. Once his port is accessed, they draw enough blood for his lab work (a CBC, and blood culture - plus one other, I think, that checks things like electrolytes and liver function). Then they hook him up to IV fluids and antibiotics. They always start with Rocephin. They told me once that it covers a lot of the likely culprits for his fevers, so they like to use that first.<br /><br />Then we wait. For like an hour or two.<br /><br />When they get the CBC results back, if the ANC is high enough, they send us home. It's always been high enough, but once it was borderline, and they let us decide. We opted to go home.<br /><br />Once we go home, we are told that we can break the cardinal rule and give him Tylenol to treat his fever for the next 24 hours, because they have a documented fever and he has been given a 24 hour dose of antibiotics.<br /><br />After the 24 hours has passed, if a qualifying fever returns, we have to start that process all over again. The second time, he's more likely to be admitted, though. We have never had a second time.<br /><br />I always wonder what exactly causes the fevers. Sometimes, I think it's just how his body is reacting to the poison we regularly put into it. But, maybe it really is some kind of infection, and the Rocephin zaps it. I guess I'll never really know. I just thank heavens every time that it isn't something more severe. Saturday night, a friend of mine had her son admitted for C-Diff (which is AWFUL!) and a blood infection. These poor kids go through so much!<br /><br />Matthew seems to be feeling better now. Friday, his fever came and went all day long, and I gave him the Tylenol so he'd be comfortable. Saturday, the fever was still there, but it was low enough to stay off the PCMC radar. It stayed between 99.5 - 100.1. It does that a LOT. Now, the fever is gone. Good riddance.<br /><br />Last night, though, Matthew woke up with pretty bad bone pain. I always worry about it because there are some lasting effects that can exhibit this way. Vincristine (one of his main drugs) can cause a condition called foot drop. It's a form of neuropathy that makes it hard to control your feet. Sometimes the kids will fall down, or walk on their tippy toes from it. They put the kids into physical therapy for that. It hurts a lot, but is correctable. Still, whenever his ankles hurt (which is where the majority of his pain is) I worry about it. No need to go through any extra pain. You know? But there's also a condition called AVN (I don't know the full name, but the V stands for Vascular and the N stands for Necrosis, which means death). It's a death of the bones, if I understand it correctly, and it cannot be corrected. It causes pain for the rest of your life - again if I understand it correctly. I'm asking a lot of questions about it today, because of Matthew's pain. I doubt that is it for him, though, because it's caused by steroids, which he hasn't taken since November.<br /><br />The bone pain is another one of those things that I stress over. Like fevers, there's a really broad spectrum of what could be causing it. And I think the chemo itself causes it. So, I struggle with whether or not to make an issue of it with the doctors. I don't want to overreact. It could mean more medicine, which he may not even need. But I don't want to underreact, because I want to get him help if he needs it, as soon as possible.<br /><br />All in all, though, he's hanging in there this week. I think I've noticed that each phase gets a little worse with each appointment, and then when he has a break, he gets feeling better again. He has two more doctors appointments during this phase of treatment, and then we move on to Maintenance. I'm excited and scared all at once. Excited because he will only have to go to the doctors once a month, but scared because doctors will only check on him once a month.<br /><br />In other news, the nurse said she will make sure he gets nominated for <a href="http://utah.wish.org/about-us">Make A Wish</a> during our last appointment. I'm excited that he'll get that opportunity!<br /><br />The stressful news of the week is the <a href="http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=1">shortage of Methotrexate</a>, which is one of the main drugs used in Matthew's treatment. It's used to prevent the spread of his cancer cells into his spinal fluid, which would quickly spread it to his entire central nervous system, including his brain. It's also used to slow the growth of white blood cells, which is where his cancer is at. Since white blood cells grow so fast, having a delay in his Methotrexate doses could mean relapse. We're praying they sort it out quickly. Right now, the clinic says they have enough of it stockpiled that they don't believe they will run out.<br /><br />Also, back to my bald barbie post, which was about a month ago. I found out this morning that the makers of Bratz are making a <a href="http://www.bizjournals.com/prnewswire/press_releases/2012/02/10/NY51728">True Hope doll</a> , which is set to be released in July of 2012. They will donate a portion of the proceeds to a children's cancer research hospital in California. I'm really glad to see it. I think it's the start of something that could make a big difference in these kids' lives.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-32588689608379131552012-02-06T12:27:00.000-08:002012-02-06T12:29:48.545-08:00Updated CountsI got the call from the clinic. Matthew's counts are getting low-ish, but he doesn't need blood, and he isn't neutropenic. What a relief! As long as his fever stays down, we won't have to go in, and if his fever goes up, he may get out without being admitted.<br /><br />Here are his counts:<br /><br />White Blood Cells: 2.4<br />Hematocrit: 30.9<br />Platelets: 367<br />ANC: 800<br /><br />He's on for chemo tomorrow.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0tag:blogger.com,1999:blog-4619683350015395525.post-9646198755884174582012-02-06T09:29:00.000-08:002012-02-06T09:38:27.485-08:00Touch and GoThings are a little bit touch and go with Matthew right now, and I thought I'd update, in case I don't get a chance to later.<br /><br />Matthew is right smack in the middle of the 4 doses of IV chemo he'll receive during this round, and he's been looking pretty pale for the last few days. He's also tired and emotional. I think he needs another red blood transfusion, and the home health nurse who came out this morning agrees with me. She thinks he's also probably neutropenic. If so, he won't get his scheduled chemo for tomorrow, because it's count dependant. I'm not sure if that means they'll wait until Friday (which is what they did during IM 1) or if they'll just give him a smaller dose tomorrow (which is what the nurse told me about how this phase, IM 2, works when he was giving me road map details just before we started).<br /><br />The other issue, though, is that he has a fever just above 100 degrees. My book says to call the clinic if a fever of 100 lasts more than an hour, but I've heard from a lot of moms that the clinic won't see him unless it's 100.6 or higher for more than an hour, or 101 for any length of time. So, I think it's likely that I'll be heading up to Primary's with him today, but it's possible I'll just be watching him closely and talking on the phone with his doctors.<br /><br />If he does go up there for fever, and if the nurse is right about neutropenia, he'll be admitted, because they always admit if both fever and neutropenia are present.<br /><br />So, we may be spending the night - or even the week if there's something wrong - at Primary's.<br /><br />The nurse that came out today took blood for a CBC, and I'll have the results of that this afternoon. I'll keep updates coming as I have more information.<br /><br />Thanks for keeping us in your prayers. At times like this, we really need it.Wendy Burrhttp://www.blogger.com/profile/18095255847821960552noreply@blogger.com0