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Wednesday, October 26, 2011

Happy Birthday!!

Well, today is Matthew's fourth birthday. My sweet boy. He's excited that he'll be four now, and he definitely knows what kinds of presents he wants, but I know he doesn't grasp the depth of meaning this day holds.

I know that all of my children's birthdays will hold a new, special meaning to me now. It is a celebration of life. I am so thankful to my Heavenly Father that he spared the life of my son. I am so thankful that the rest of my children have had healthy lives.

I don't know if I've mentioned this in Matthew's blog before or not - I know I've written it elsewhere, so I apologize if I'm repeating myself. I have a friend who is somewhere in her early fourties, I assume. She told me shortly after Matthew's diagnosis (after I told her how good his chances are) that she remembers when she was a little girl, Leukemia was essentially a death sentence. The numbers agree. In 1970, it was first discovered that some patients could survive Leukemia. That's only 41 years ago.

30 years ago, the survival rate was roughly 10%. My friend said that news of a diagnosis like that was spoken quietly when she was a child. The family would plan a special trip - like to Disneyland or something - to make some good last memories. Then they would come home and put the child in treatment, in hopes of prolonging their life, and meanwhile, they would plan the funeral.

Fast forward 20 years - 10 years ago, the survival rate was roughly 50 - 70%. So 1 out of every 2 diagnosed kids would live. That's awful, still! I have seen 4 kids diagnosed with Matthew's same type of cancer since he was diagnosed - and those are just the families I've met. So, out of our five, 2 or 3 wouldn't have made it. That makes my heart hurt to think about.

Today, a child with Matthew's diagnosis has an 85-90% chance of a complete cure at the end of treatment. Boys have to go through treatment for a year longer than girls, but even though his treatment plan is long, I feel completely confident that he will beat this. At the end of his treatment, if he was one of the unlucky 10-15% who is not cured, we would still have options for him. Options like Bone Marrow Transplant, or radiation therapy. In my mind, that adds even more to his chances of survival.

The reason I share all of that is because today - on his birthday - I really feel the depth of how lucky we are. I am reflecting back on all of the families who have sacrificed, and so many who have paid the ultimate price, to improve treatment. I cannot ever hope to pay them back, but will spend my life paying it forward.

I'm so thankful to be living in this day and age. In another time in history, this would probably already have had a very different outcome, and I'm painfully aware of that. Every time I think of how much his treatment sucks, I remind myself that it's better than the alternative. I'm so thankful to the families who came before us who found it in their hearts to give extra blood and bone marrow for study purposes, knowing that although it wasn't going to help their child, it might help another child in the future. It worked. I hope they know that. I'm thankful that because of them, we can celebrate his life today.

So, join me in celebrating. Not just for him, but for all who came before him. He is a vibrant little boy, who will live on to lead a full life, and I am positive he will be a leader who will affect the lives of many.

Today is his first birthday as a SURVIVOR! May many, many more follow.

Happy birthday, Sweet Matthew Burr! We love you!

Sunday, October 23, 2011

Bear Lake

I tried like crazy to post all weekend long, but none of the electronics that we brought with us would work with blogger.

So, here's my update. Matthew made counts on Thursday. He did great! So far, every week on Interim Maintenance I, Matthew's ANC has dropped by roughly half. This time, I fully expected that he would be so low that they would want to hospitalize him. Instead, they went up from the week before. I was so surprised! His ANC went from 700 up to 1150 this time. Way to go, Matthew! He seriously is one tough kid.

We're a big family, so we don't all fit in one cabin. A couple of months ago, we would have brought our trailer, and been happy we could hook up to the KOA's accommodations. But we sold the trailer to save on monthly bills. So, we signed up on the waiting list for two cabins, and we got picked off the waiting list. I was really surprised, because two families maybe could have gone in our place, but we decided to take it. We haven't been able to do anything fun as a family in a long time.

So, each cabin had just enough space to sleep four. We couldn't decide if we would take one, and put the kids in the other, or let the girls take one, while we slept in the other with both of the boys. In the end, the girls got their own cabin. Ours had a bathroom, a fridge, and table that could seat four. Theirs was just two beds (a queen and a bunk bed), and a desk with a single chair. They loved it, though! It was a tiny taste of what it will be like when they are on their own someday. Alaina kept inviting us over, or saying they were coming to our place. She had a good time with it, and talked about what it will be like to live in a dorm someday. It made it a little more real to me that we only have a few more years with her at home. These are the last few years that my family will be whole.

Allison had a great time with Alaina in their cabin. They liked to walk around the KOA, and enjoyed some extra freedom. Mikey enjoyed playing at the playground, but the most fun I think he had was when we went to the rec room and blew $5 in quarters. We played air hockey, fooseball, and pinball, and we won about 50 bouncy balls. Then we went to play miniature golf. That was fun. Mikey loves miniature golf.

Hope Kids provided some fun events, too. On Friday night, we went to pizza in town (Garden City, Utah. SO beautiful!). The pizza was delicious, but we didn't stay long, because Mikey's backpack had been leaked all over by the kerosene heater, and he had changed into a shirt that smelled particularly awful. We were all getting sick from the smell - especially poor Mikey - so we hurried and ate, then left so he could change. Saturday morning, we had a breakfast burrito with Hope Kids, courtesy of one of the families. It was delicious, but very cold still outside. Saturday was the second day after Matthew's Chemo, and that's when he struggles the most. The combination of that and the cold made it so that Matthew didn't even last through the entire line before he wanted to go back to the cabin. So, Justin hurried and ate his breakfast, and took Matthew back. On Saturday afternoon, Hope Kids did a little carnival that was really cute. There was a ring toss, magic tricks, darts, bobbing for donuts (donuts tied with strings, and then dangled over a highly strung rope, and the players have to eat them with no hands), a three-legged race, and pumpkin bowling, to name a few things. The kids all dressed up in their costumes, and went through the attractions. It was a good time.

We also spent some of Saturday on a nice drive. That seems to be our thing when we go somewhere as a family. We like to see the sights. So we decided to go to the next town for supplies. It was interesting. After we crossed the border into Idaho, we went through a few small towns, which were adorable. The houses were old-fashioned, but beautiful and well-maintained. Sprinkled into each town were also new, high quality homes. We often wonder what people do for work when they live in towns like that. We passed through a town called Paris, and Mikey was excited to tell people he went there, even if it was Paris, Idaho. Finally, we got to Montpiliar. It was like a step back in time. The main street had cute little stores, including a store that was both JC Penney, and Radio Shack. The hospital is also a thrift store. We stopped at a store called King's, which reminded me of a WalMart without groceries - sort of. Even more, though, it reminded me of the old Sprouse Ritz we used to have by my house when I was really little. We bought a few things there - some towels, which we had neglected to bring with us, and some cooking items, and a costume for Matthew. Then we went back to the KOA and relaxed.

All in all it was a good weekend, and it was good for all of us to get away, but as always, it's good to be home.






One of the highlights of the weekend was Alaina, Allison, and Mikey's extreme teeter-tottering. The next day I was telling one of the other moms about it, and she said she had heard the story from her husband. Apparently, they made news around camp for their insanity. As I was taking this particular picture, Allison was actually falling off of the teeter totter onto the ground. She landed on her back. I felt bad for laughing, but she was okay. Then I showed her how funny the picture turned out, and we had a good laugh.












This is one of my favorite pictures! The back of the Hope Kids t-shirts say, "Got Hope?" Which I think is an awesome thing! Matthew is wearing his here, along with the hat that my good friend, Lorraine gave him. She was in the Army for a long time. This hat is the hat the troops wore in Desert Storm, and she gave it to Matthew along with another Army hat. She says he can wear them on the days he is not feeling so strong, and they'll help him be "Army Strong." He looks pretty strong here to me, what do you think? He was marching his way to the playground, and he didn't particularly care if I kept up with him or not.








Spiderman this year. He'll be getting Chemo on Halloween, so afterward, we're going to trick-or-treat at the hospital. I have to work that night, so I don't know if they'll be able to take him out around the neighborhood or not. But this was a fun day for him.














My boys, bobbing for donuts. My girls did it later, but they only did it because they really wanted a donut. They made sure I wasn't around to take pictures of it.

Monday, October 17, 2011

Thank Heavens for Hope Kids!

Things are going well right now. It feels a little bit precarious, but so far, there hasn't been a problem. Matthew didn't get Allison's cold, or Alaina's stomach bug, which I'm really pleased by. That means my kids are doing a good job keeping things very sanitary in our house. Matthew's ANC was pretty low last week, 700 last Monday, and I'm nervous about what they'll be this Thursday at his appointment. I feel a little bit like I'm waiting for the other shoe to drop.

We were invited by Hope Kids to go to Bear Lake this weekend, and stay at the KOA. They do a dinner on Friday night, and another family is doing a breakfast on Saturday morning, but it's a whole weekend for us. We signed up for a waiting list so we could have a cabin, because we sold our camping trailer a few weeks ago. The cabins only sleep 4, so we need 2 of them, and we totally didn't expect to be pulled off the waiting list, but we were! We're so excited that we get to take our family to go and do something cool like this. My kids can meet other kids who are going through the same things.

Plus, our summer was pretty rough. I got really sick with my gallbladder in May, and had to go to bed after lunch pretty much every day. As soon as I ate each day, I got sick. It was so frustrating. Then, finally on June 13th, I had my gallbladder out, but June 12th is when Matthew's infection started in his cheek, which ultimately led to his diagnosis on July 13th. That was such a time of crisis, we were lucky if we found the time to go to church, let alone a fun family weekend! Besides, who can justify the cost of something like that when so many people are helping us just to get by?

The thing is, we only have so many years left where our entire family will live in one house. By the time Matthew is done with treatment, Alaina will be in her second year of college, Allison will be in 11th grade, and Mikey will be in 8th grade. If we want to enjoy time as a family, now's the moment - there is no more putting off the vacations, and family outings. So, we're going to have to learn to work it in with cancer in the mix. That beast has already taken enough from us, and I am determined to enjoy the few years we have left before our girls are on their own.

So, thank heavens for organizations like Hope Kids! They will allow us to do things like this with our family at no cost to us. I wish that I could express what an important gift that is for us. Words will never be enough to explain it.

Those of you who pray, please include Matthew this week. If his counts get too low, they may want to hospitalize him, and then Justin and the kids will be camping without Matthew and I.

Thursday, October 13, 2011

Things That Are Still Normal

Matthew has always been a handful. Anyone who's ever been responsible for caring for him - even if it was a very brief time - knows this. We have always said how much he hates to be contained. Play-pens and child-gates were useless for him, and I always had to chase him around church more than other parents of kids his age. He's just ... busy!

I have said before that I celebrated when I started to see some normal behaviors surfacing, even if they were naughty. Like the time he colored on the walls.

I'm over that.

Matthew is totally acting like a normal almost four year old. He is testing limits all over the place, and trying to gain control over any aspect in his life that he can. At the hospital, we encouraged that, because if he has control over the procedures, he's less scared of them. Now, it's spilling over into home life. He is testing every limit we've ever given him. It's exhausting!

Don't get me wrong. It really is good to see him behaving like a normal child his age. But when you spend entire days cooped up at the doctor's office, and can never go outside or around other kids, it creates some issues. We're working hard this week at setting firm limits, and deciding which limits we'll allow him to push. For example, he is no longer allowed to answer the phone, because he won't give it back to me. And because you never know if the person at the other end is a friend, or calling for business reasons, or even a recording that I need to hear. On the other hand, I do allow him to eat anywhere, even though the rule is that kids eat at the table. Because it's the only way I can get him to eat anything, and I really want him to eat. The only place that I have made off limits is my bed. Because he gets crumbs everywhere!

Another thing that's normal is that Allison always gets sick during cold and flu season. Poor Allison. She just catches everything, and worse than anyone else does. She has only been to school one day this week. Which means she's going to fall behind, which is frustrating for her, because she tends to be a straight A student.

Plus, with Matthew's counts being driven down by his current course of Chemo, we have had to keep them separated. Thankfully our house is built in lots of small sections. So she can stay on the main level of the house, and he can stay upstairs. I certainly haven't been able to take care of her this week the same way as I used to, though. Poor kid. She's sort of had to fend for herself. Also, she really needs physical contact with Matthew, like lots of hugs and kisses. It helps her deal with all of this better. I totally understand that, because that's how I feel. So, I think it's hard on her to feel like she could expose him to something that could make him really sick. She's done really good, though, at protecting him by keeping her distance, washing and sanitizing her hands a lot, and wearing a mask if she's going to be around him. I'm so proud of her. All the time. She's a really great kid!

There's really nothing else noteworthy going on this week. We're sanitizing extra because of his counts (700 ANC on Monday, and more Chemo which will probably drop it even more), and we're hoping he won't become neutropenic. He got a flu shot on Monday, and Justin and I got one on Tuesday. Yuck! I am not the flu shot's biggest fan, but we need to protect our boy. The kids will get theirs when Allison is better. Assuming her cold isn't really the flu. We're preparing for Matthew's birthday, which is the 26th, and we're preparing for Halloween.

I just hope he'll be well enough through all of that to have some fun!

Monday, October 10, 2011

Church

Yesterday, when we were getting ready for church, Matthew talked me into letting him come. I'm worried about his counts and having him in a crowd, but he's been so bored - and so lonely! So I told him he could come if he would wear a mask. He agreed, and we hurried and got him dressed. My plan was to bring him for sacrament meeting, and then bring him home to Justin so the rest of us could go to our classes.

Matthew had other plans.

After sacrament meeting, he took careful tabs on where everyone else went, and informed me we were going to his classroom. Boy, once he decides something like that, it's like holding back the ocean to try and change his mind. My choices were to let him go to class or take him home kicking and screaming. So I went to where his class would be, and realized that the whole Primary was practicing for the program together. No classes for the day. That was perfect, because I feel better about a bigger room, even though it's a bigger crowd, because the kids aren't face to face as much. So, I went in with him to help. Truth be told, I know my way around Primary better anyway, after all those years of serving in there. So I sat with Matthew for the whole two hours. He kept his mask on without a fight at all, which surprised me. At one point, he got really sick of it, and started to fuss about it, and I showed him a different kind that I had in my purse, and he was happy. The first one was harder, and had two elastics that go behind your head - one at the neck, and one above the ears. The second was softer, and had two elastics that hook behind your ears. He was happy for a different feeling mask, and wore it the rest of the time.

He wholeheartedly participated in all the standing and sitting, singing, and talking, and he was so anxious for his turn to "talk in the talkie talk," as he puts it, which is to talk into the microphone at the pulpit.

After they got through a single run of the program, I talked to the kids for a few minutes about Matthew's cancer. I was worried that I would say something that would scare them, but their questions were so sweet and innocent. Mostly, they wondered about his hair, what the mask does to protect him, and why germs are so dangerous to him. One sweet girl asked how he got sick in the first place. Soon, the conversation started to turn to times when they all have been sick, so I turned the time back over to the Chorister. At that point, Matthew was completely overstimulated, so we left. But that was only 10 minutes early, so I really consider it a success.

I think we may be onto a good thing here. He needs an outing like that once a week, and what better place to get it than Primary! I wonder if we'll ever get to the point where we can leave him in Primary without me? And I thought I was going to go to relief society, now that I was finally released from Primary! Ha! We'll see...

Friday, October 7, 2011

New Chemo is Kicking In

Today, it appears that Matthew's new Chemo is really kicking in. He slept long again this morning. Thankfully, I was able to get him to eat three scrambled eggs this morning, but he didn't touch the toast, which is usually his favorite part. Yesterday, he didn't eat anything except some corn chips until dinner time. Then he ate about half a package of Ramen Noodles. I'm worried about his non-existent appetite. Kids who won't eat get feeding tubes. I'd hate for that to happen to him!

He's looking pretty pale today, too. We noticed last night that his eyes are pretty sunken in. He looks sick. For the first time in at least a month. That's always disheartening to see. But his spirits are up, and that's a good thing. He still wants to play some, and gets enthusiastic about certain things.

He's been asking for baths several times a day. I'm thinking it soothes him. That's definitely better than during induction when we had to bathe him screaming and kicking. I think the sensation of the water on his skin then was too much for his hyped up body to deal with.

We got some great news this morning! We are members of a group called Hope Kids. It's one of the charities that I mentioned in an earlier blog entry. Hope Kids does all sorts of fun stuff for families, with the idea that a child who has hope, and is looking forward to things, will fight harder. Beyond that, though, it takes a lot of pressure off of families. When you have the weight of caring for a child with cancer on you, it's hard to justify money for fun outings, and family time. Hope Kids provides family activities for the entire family. If your cancer cutie is too sick to go, the other siblings are still invited. It allows them to get to know people like them. The siblings, too. They need support, and their friends will never understand them like these kids need. So, Hope Kids is a great thing in a lot of different aspects.

Anyway, we haven't gotten to the point yet where we were ready to go to an event. We have a hard time, too, because I'm working Friday nights and Saturday mornings, which is when most of the events are. But in two weeks, they are doing a huge camp out at Bear Lake, in the KOA there. Last year when we went to Oregon, we fell in love with the Warrenton KOA! We swore we'd be KOA people for life. Then, this year, we had to sell our trailer to reduce our monthly bills. It was a sad moment, and we hadn't even gotten the chance to camp in it this summer because I got sick just before Matthew did. But Hope Kids got us a Kabin (yes, I know - it has a K. KOAs use K for everything.) and a Kottage. Each sleeps four, but since we have 6, we will be able to use both.

Our family needs this getaway more than I can describe. When I opened the email this morning, I cried.

Also, I learned this week that the couple who runs the Salt Lake chapter of Hope Kids moved here from Arizona - away from all their family and friends - to do it. I have so much respect for them. What an amazing service they do!

One more subject: Pictures! I know I keep promising them. Hopefully my next entry will consist of just that. Lots of pictures.

Soon. I swear!

Thursday, October 6, 2011

Cooped up!

With cold and flu season coming on, any cancer mom would be worried. But I'm particularly worried because the treatment protocol that Matthew's on right now is one where they will constantly juggle his Chemo to give him the strongest dose possible without making him neutropenic (ANC below 500). They will, however get him as close to neutropenic as possible. See, the methotrexate that they're giving him through his IV this round drives counts down. They know that. But it's also very effective, and they want to give him as much of it as his little body can take. So, I feel a little bit like we're walking a tight rope. I want him to have as high of a dose as he can, too, because it's effective. I want him to have the very best chance possible. But I don't like that his immune system will be so compromised for it. Especially right through cold and flu season.

So, for the first year in our lives, we will all be getting flu shots. None of us ever have before, and now all six of us will. Before, I always thought it was a waste of money. Who knows what strain of the flu you'll be exposed to? Right? And the vaccine only protects you against one. I think. The thing is, I don't know, because I never had a reason to care that much. But anyway, I never subscribed to the popular belief that they are effective before. I even heard stories that people got the flu because of the shot. That still makes me nervous. The flu is serious business in cancer world. But, it's funny how your mindset changes. I know I've said it before, and I'll say it again, the things that used to be important suddenly aren't anymore. Your eyes are just opened up to a whole new world. Now, we're all going to get the shots in an attempt to protect him from that serious business.

Matthew's feeling just about the same as the last post. Sleeping extra hours - usually at least an hour in the morning, and sometimes taking a long nap. If he doesn't take a nap, he's rather grouchy in the evening. His knees and ankles are hurting him. Not much, but enough for him to say so. Yesterday morning, he said his forehead hurt, and his tummy. None of it alarmingly so, but it's sad to me that my little three year old is dealing with those kinds of aches and pains.

His hair seems to be growing in even faster, all of the sudden, and it's dark. I think he's going to end up with darker hair than he started with. That will be interesting to see. I know it sounds weird - and the cancer moms all told me I would feel this way - but I really love his bald head! He never went completely bald, he just had some peach fuzz left when the hair all fell out, but I really like the peach fuzz. I rub his head, and lay my cheek on it, and kiss it constantly. I am, however, excited to see his hair grow back. He'll look like such a little man! He's going to lose it one more time, but I'm starting to think that he'll get it all back first. Never would have thought he'd have to lose it twice. Oh well. I always say this - it's the side effect that doesn't hurt. So, it isn't worth worrying about.

Also, I've noticed that his face is much thinner. People who haven't seen him in a while are surprised when they see him. Yesterday, the teacher who comes and does his preschool came, and she said that she thought it looked like he had lost all of his weight. When he was on the steroids, he gained 18 lbs in 28 days. In the week or two afterwards, he lost 8, and has held steady since. The thing is, he's still getting thinner, but his old pants are too short, so I think he's growing into the rest of that weight. They told me at his diagnosis that he probably wouldn't grow at all this year. So, I think his tough little body is defying the odds and growing anyway. I'm pretty pleased with that.

I seriously love that kid!

With the rain, it makes it hard to take him anywhere - especially since I'm worried about him getting sick anyway. He's feeling pretty cooped up, and gets mad whenever I leave the house and don't take him with me. Poor little guy. I wish I could figure out some way to help him with his cabin fever!