Follow by Email

Monday, August 29, 2011

High Counts

With Matthew's ANC (Absolute Neutrophil Count - those are the little infection fighting warriors in the white blood cells) up, we've gone out on a few adventures.

Matthew is feeling a lot better this month. This round of chemo is relatively easy for him to deal with, despite the fact that he's actually getting more chemo. Last round, he got chemo once a week. Usually a dose intrathecally (delivered in the spinal tap into his spinal fluid) and a dose intravenously (through an IV into his bloodstream) on each clinic visit. Then, at home, we gave him steroids every day.

This time, there are no steroids (this is where you hear an angelic choir singing in the background, "Ahhhh!") but he gets chemo every day. He takes a chemo pill every day, and one and a half on Sundays, plus he goes to the clinic for intrathecal chemo once a week.

His hair has mostly fallen out this last week - about 90% of it. But it seems to have stopped falling out, which believe it or not, is frustrating. He has these strange little patches of longer hair on his head, and then some regrowth that's a totally different color. I'd rather he go fully bald. I keep trying to convince him to at least let us buzz it, but he won't hear of it. And he won't wear hats, either. The way I see it, they're for his benefit - so he doesn't feel like people are staring at him - but if he doesn't mind, and he doesn't want to wear them, there's no need. He hasn't even drawn that many stares, and he doesn't notice when he does, so it's no big thing. We just have to keep sunscreen on his head.

Now, for our adventures. Mostly, we go to the park often. Two or three times a week. Matthew needs to get out and play in the fresh air. He's just been feeling too cooped up. Our neighborhood park drives me crazy, though, because it's full of bees. Not real bees - like honey bees that build hives in the trees. These are some kind of hornet or wasp, and they burrow in the sand. Every square inch of sand at our neighborhood park's playground has a hole in it from one of those stupid bees! You all might not know this, but I'm allergic to bees, and therefore very frightened of them. Justin says these aren't regular bees, and he tried to explain the difference, but to me, a bee is a bee, and I hate them all equally. So, the last time we went to the neighborhood park, I decided I'd rather drive Matthew to some other park. So now I try to take him to this other park we drive past to get to Allison's school. We'll usually play there for a little bit before we go to pick her up in the afternoon. It's a nice park, and I didn't see a single bee. Or wasp, or hornet, or yellowjacket... whatever they all are!

We also took Matthew to church. That was something we thought we wouldn't be able to do for 3 years! But we decided if we're careful, it'll be okay. Justin and I agreed that just sacrament meeting would be a good idea. We sat on the front row, so we'd get the sacrament first - before all the other people there had touched it. That way, we'd greatly reduce his risk of being exposed to something. The enclosed space of the classroom, and Sharing Time were too much for our nerves to handle. So, our whole family went to sacrament meeting together. It was just as chaotic as any other sacrament meeting we have been to in the past, and maybe even more so because we sat on the front row, so there wasn't another pew in front of us boxing Matthew in, but it was wonderful. It was good to have my family together there again. The last few months, it's felt fractured when only some of us go.

I took Matthew to Walmart with me. You wouldn't think that would be an ordeal, but you just don't realize how much 3 year olds like to touch everything they see! Just getting the cart made my blood pressure go up. I tried to clean it with those sanitizer wipes they have, but they were out. So the ancient door greeter man opened up the next package for me, but it took him forever! Then, I pulled the first one out of the package, and it got stuck and ripped in half. So, I cleaned the cart with half a wipe. By then, Matthew had touched the whole thing anyway, so I pulled out my hand sanitizer and made him use some.

He was so glad he got to get out, though, so it's impossible to deny him at least that.

In church, one of my friends said the funniest thing. Everyone was asking how well Matthew's adjusting. The truth is, now that he's feeling better, he's having a few behavioral issues. He's been acting kind of spoiled, and when he gets bored, he gets destructive. So, when she asked me how he's acting, I said he was acting like he's the center of the universe. She said, "Well right now, he is!"

I thought that was really funny. There's a lot of truth in it, though. It makes you realize how precious life is when something like this happens. It makes you realize how much you love his little guts! Things that were important 3 months ago just aren't anymore.

Something I work really hard at, though, is remembering that all life is precious - not just his because it was in danger. My other children are just as important and precious to me. I appreciate them so much more now, because I realize how fragile it all is.

Matthew has Leukemia, and my other kids are healthy. But they aren't invincible. All the things I worried about for them before are still present in our lives. Alaina still drives. Allison is still subjected to the cruelty of Jr. High. Mikey still misses his best friend who moved away. Those heartaches are still real, and my kids need me just as much as they did before. More, in fact, because now their baby brother has cancer.

If there's one thing I can impart to any of you who are reading my blog, it's this: Appreciate every moment with your children! Love them with all of your being! You only get one chance to raise them right. You only get one chance to make sure they know how loved they are. Don't forget to give them big, fat hugs and kisses every single day. Always tell them that you love them. Tell them until they roll their eyes at you. Make sure they know - without a shadow of a doubt - that they are loved for every part of who they are. You can never regret that. They are the center of your universe - as they should be - and there is no harm in letting them know that!

Friday, August 26, 2011

In Memory of Daniel Allen

Today, I don't have any one particular thing to blog about, just little snippets of different things.

It's been a rough week for me. I belong to a support group on Facebook made up of around 100 moms in Utah who have a child with cancer. They have been an amazing support for me during this difficult adjustment time, and I've made some friends already that I think I will stay friends with for life. One of the moms lost her son, Daniel Allen, on Monday. Please keep the Allen family in your thoughts and prayers this week, as they cope with their loss.

For some reason, Daniel's passing was really difficult for me. I've never actually had a conversation with his mom, just made a few comments back and forth with her online, and I never met him. But watching this process from such an intimate point of view was difficult for me. It isn't right for a parent to outlive their child. I am a firm believer that fair is a subjective term, and I hate when people say something isn't fair, because everyone has to make the best they can with the circumstances they're given. But to lose a child in such early years of life (Daniel was 7) is not fair. So, I guess that's where I draw the line. A parent shouldn't have to go through that. My heart is heavy for the Allen family right now. They're handling this with so much grace and strength, which I admire more than words can say.

The second reason I'm struggling this week is work. My job is a great job. I work for a really wonderful company, and the management in my department really is fantastic. They were able to work out a schedule with me to allow me to work part time, and still be able to keep Matthew home all the time, because he can't go to daycare. I wish I could just stay home and take care of Matthew all the time, but we'd have to starve and go naked, so I need to work at least part time. So, my company has allowed me to set up a schedule that will only require 3 work days a week. Mondays and Fridays, I'll work 4:30 - 10pm, and Saturdays, I'll work 7 am - 4:30 pm. I went back to work Monday. That was rough on me, too. I'll get through it, though. My job is really quite great, so I know I'll adjust - it'll just take a few days.

Aside from that, though, Matthew has had a wonderful week. He started his new round of chemo. This time it's a pill called 6MP (I don't know what the MP stands for) once a day. It's a chemo pill. And he'll go in for Methotrexate once a week in his spinal fluid. With no steroids, Matthew has lost 8 of the 18 pounds he gained. He is back into some of his old clothes. He can play again. He can run. He still has a slightly difficult time with stairs, but he gets stronger every day.

I don't think there are very many side effects plaguing Matthew. He's a little bit more sleepy than he was during his break between rounds. That just means he chooses to take a nap in the afternoon, which is no big deal. He took naps right up until he stopped going to daycare. I think he might be having some discomfort in his stomach, but not pain. He hasn't complained of any pain, and I haven't given him any pain medicines since the day we got out of the hospital for his little virus almost 2 weeks ago. His hair is still falling out. It sped up a little for a couple of days, and there was hair everywhere, then it slowed back down again.

Matthew has enjoyed his time this week. His counts are up, so we took him to see a movie. Smurfs. He really enjoyed the movie theater. He's been back to the park, and he's gone outside to play in the sprinklers a few times. He wants things to do to keep him busy. Gone are the "sick" days of laying around and watching Spongebob all day. He does puzzles, and colors, and does crafts every day. All of you who gave us those things as gifts, they are getting much loving use now. Thank you!

I'll end my entry today with some pictures. I hope everyone has a wonderful weekend!!










Playing in the water






















Mikey has one last week of summer with Matthew because his school is getting a late start this year due to painting.




































































Mikey loved the sample chair at the movies. It moves and shakes with the images on the screen. They show previews on it at The District.

Tuesday, August 23, 2011

Round 2 - Fight!

Well, we've had quite a couple of days.

Matthew is restless and tired of being cooped up in the house. He really misses his friends at school, who he talks about constantly still. He hasn't been to daycare in 6 weeks, and before that, out of the last 4 weeks, he missed 3 because of the infections in his cheek and neck. But those kids were such a huge part of his world that he misses them like crazy!

He misses his Primary friends a lot, too. He really wants to be around other kids, which is sad because he can't because they're little germ factories.

Sunday, I went to church with Alaina, Allison and Mikey. Justin stayed home with Matthew. Matthew can't go to church at all. He won't be able to for a few years. That makes me sad, because I know how wonderful primary can be, but I didn't think he would be so upset about it because I usually have to fight to get him to go to his class and sit with them during sharing time. On Sunday, however, he was in tears that he couldn't come with us. It was really hard to leave him. This is the only way we can continue going to church, though, and it's important to us to continue. For us, and for the kids - all four of them. So Justin and I take turns going to church while the other stays home with Matthew and has the sacrament brought to them.

Sunday was supposed to be Justin's turn, but he had a headache, so I went. I was going to go for Primary anyway, but I just went for the whole time. I'm glad I went too, because I got released from my calling as Primary President, and I taught my last sharing time. It was cathartic. I did cry a healthy dose of tears, because I'll miss those kids like crazy. I did manage to stop the tears before they all got there for sharing time. Besides, I know it's for the best. I can't be there every week, and I certainly can't devote the time necessary for a calling of that magnitude with my current familial responsibilities.

Anyway, Matthew's cute Sunbeam teachers sent home all the handouts, and it really cheered him up. Then I took him to the neighborhood park, which he really enjoyed. (Pictures to come tomorrow.)

Monday, Alaina started school - 11th grade!

As the kids are starting at their respective schools, I'm afraid that Matthew will feel more and more alone. I need to find activities for him to do, but the problem is that every time I take him out of the house, I lose control of the respectively germ-free environment he has at home. So his counts play a big part in what I can do to get him out of the house.

Anyway, Monday we got a visit from a home health care nurse. Matthew liked her a lot, and cooperated in standing on the scale, measuring his height, checking his pulse and blood/oxygen saturation - the whole deal. But when it came time for her to access his port (put a needle into his catheter), he was very upset. I had to hold him down, and he cried his eyes out. She put the needle in, and got no blood from it. So she had to pull it out and try again. Still no blood. She tried a third time, and still got nothing. That was her limit. She gave up and left, and we didn't get to find out about his blood counts, which was the purpose of the visit. What's more, Matthew was pretty traumatized, and I don't know if he'll tolerate visits from home health care again, which will make future blood draws pretty inconvenient. We're going to try again in about a month, and then we'll consider alternatives.

So, today we went to the clinic. Before we could get started, we had to get his port accessed, and get a blood draw so we could find out his blood counts. Then we were whisked off to RTU (Rapid Treatment Unit - where they do short procedures that require general anesthesia) for a Lumbar Puncture (Spinal Tap - for chemo in his spinal fluid). Then back up to the clinic for IV chemo. We were at the hospital for about four and a half hours today.

The bright side is that when we went back upstairs to the clinic, we found out Matthew's counts. What follows is a very rudimentary overview of ANC.

ANC stands for Absolute Neutrophil Count. Neutrophils are the part of the white blood cells that fight off infection. ANC is the most important count to a Leukemia patient, because that's what the Leukemia attacks, and that's what the medicine attacks. When someone's ANC is extremely low (below 500) they are neutropenic. That means they don't even have the ability to fight off the germs in their own bodies. For example, we all have a germ in our lungs that's there all the time. Our immune systems keep it at bay, but when someone is neutropenic, they are highly susceptible to a very specific type of pneumonia. Because of this, Matthew will take a special antibiotic for the next three years.

Matthew's ANC was 0 when we were admitted to the hospital in July the week he got diagnosed. That's exceptionally bad, and we're lucky his salivary gland and lymph nodes were all that got infected.

So, as we move up the scale, 0-500 is neutropenic. 500-1000 is "at risk." You should keep the child in a very germ free environment, but they can at least fight off the germs inside of their own bodies. 1000-2000 they can go into public, but are still a little low. 2000 - 3000 is what a normal, healthy person would have.

So, with that little crash course, Matthew has been above 1000 once in six weeks. He was at 1500 for one day. The next day, we checked again and he was at 1000 again. It can be that fleeting. Of course, he was fighting off a virus that day, and thank heavens he had some neutrophils to do it! But it was a bummer when we saw it go down, because we had all sorts of activities planned.

Today, when we got back his numbers, they told us his ANC was 1900! Justin and I both practically got up in the clinic and did a little happy dance. What's more, Matthew's doctor told us today that for the next 29 days, his counts are likely to stay high. Needless to say, we wanted to celebrate, so we took Matthew to the movie theater, which he had been asking to do since he got sick. 1900 could be fleeting - you never know. We also stopped into the nursing home today (the place where Justin worked for 10 years prior to his new job, which he just started 3 months ago.) They did a fundraiser for us, and we brought Matthew in to meet the people who were in charge of it.

The other thing that 1900 allowed was for Matthew to start his next round of chemo. A "round" of chemo is set up as a specific number of days, where they administer medicines on a very strictly regimented schedule. Induction was 29 days. He got an 11 day break (usually only a week, but they moved us from Thursdays to Tuesdays, so we got some extra time.) Now we are on Consolidation, which is also 29 days. Some rounds go for up to 12 weeks, and then there's always the famous Maintenance. That's the last round, and it actually goes for over 2 years for boys. It's a lot to take in, but suffice it to say that Consolidation is a relatively easy round, and I keep hearing that the kids handle it really well.

We should have our happy little Matthew back this month, and we're ready to party!

Sunday, August 21, 2011

Hair Pictures






The crown of his head.






















Checking out Alaina's new car.


















Up by his forehead.
























Who could ever resist that smile?



















Alaina helped him make a "tape hat" last night. It got out a lot of his hair. This is the result.

Even with that much of it gone, after he slept in my bed with me last night, I woke up with a nose full of his hair this morning. It won't be long now until he's fully bald.

Saturday, August 20, 2011

Hair Loss

Well, it seems we are getting into the full swing of hair loss.

I don't really know what I expected. Maybe for it to fall out all at once, or in big chunks. That is not what's happening at all, though. It's actually quite a slow process.

When we were in the hospital the first time, right after Matthew was diagnosed, I noticed spots in his hair that were thinning, and I noticed a few eyelashes on his face. The doctors said that it varies with each kid, but he would probably lose his hair during induction - that's the first 28 days.

When we got home, and I joined my Facebook support group, I asked the moms, and they all said two or three weeks - there were a couple that had different experiences, though. One whose child started losing hair on the last day of induction, and one whose child lost hair 8 months into treatment, during a particularly difficult phase. Everyone seemed able to mark the day, though.

That's where Matthew's experience has been different. He started losing little bits of hair and eyelashes within the first few days of chemo. But right now, he's on day 38 of his treatment, and it's still a very slow and steady process.

This last week, which it just so happens has been his first week without any chemo - a break between phases of treatment - I've noticed far more hair loss than ever before. When I kiss him on the head, I get little hairs in my mouth. In the bathtub, you can see them floating around. You can pinch a finger full of hair and pull, and you get quite a few of them out. Even rubbing your hand over his head will get some hair out.

We'd buzz his head, but it's already done. Justin buzzed it less than a week before Matthew was diagnosed.

One thing is for certain, though. This is not something that just happens overnight. It's not like one day your child has hair, and the next day he doesn't. At least for Matthew, it's a slow moving process. Literally one hair at a time. His hair is very thin now, and you can tell he's losing it, but based on his track record, it may be a long time before it's all gone.

I'll post some pictures later.

Thursday, August 18, 2011

Remission

Remission. What a beautiful word!

I guess before, I had some misconceptions about remission. Which is interesting, because my mom is cured from more than one kind of cancer, and before you can be called cured, you have to be in remission for a certain amount of time. But my mom was never very vocal about her cancer. In fact, when she had breast cancer, she didn't tell any of us until after she had gone through surgery to remove it, and had started her radiation treatments.

I always thought that once someone was in remission, they were done with their treatment. After all, the cancer is gone, right? So five weeks ago, when they told us that the first phase of treatment was called induction because it induces remission, and that Matthew was 97% likely to be in remission after 28 days, it didn't click with me. If they can induce remission in 28 days, why does he have to be in treatment for 3 years and 3 months?

Well, I've heard a few things. Most importantly, if they stopped now, and didn't do any more treatments, the cancer would just come right back. See, the test they do is very accurate, but they don't have any way of detecting the smallest markers of Leukemia. So, even though they can't see any cancer on the scans, that doesn't necessarily mean it's all gone. There could still be some hiding out in weird places.

The big thing, as far as I understand it anyway, is that they still have to change the way the bone marrow works. The bone marrow is the organ that makes the blood. If it isn't "reset," it will just make new Leukemia cells, and we'll be back to square one.

So, while we're celebrating, we do know we're nowhere near being out of the woods, yet. It's a fantastic first step. What has been accomplished is the eradication of the cancer in his blood. That horrible month before his diagnosis - the swollen glands and nodes that would not soften, the fevers, the pain, the doctors, the antibiotics - that month was a manifestation of his cancer, which is now gone. Even though we're just getting started with his treatment, this is definitely something to celebrate!

Matthew is in remission!

Wednesday, August 17, 2011

Life After Steroids

I wanted to take a minute to share with you the changes of this last week.

Steroids were rough on Matthew. I've talked about it a lot in the blog, I know, but just to put it into perspective, the doctors said this last week that every adverse effect that they can cause, they caused in Matthew - to the extreme. He was so swollen with fluids that last Thursday when they did his procedures, every place that they broke the skin was weeping fluids for hours after. His legs got so weak, he couldn't take the step up onto his potty chair, which he uses as a stool in the bathroom. He was so hungry that if he wasn't eating, he was talking about eating. His mood was so poor that he wouldn't talk to anyone but me, and most of the time even with me it was very unpleasant. There were no hugs or cuddles, and he rarely tolerated people kissing him, even on the head or cheek. He went from roughly 30 pounds (which was a little bit underweight) to roughly 48 pounds in 28 days. He went up two sizes in clothing. His belly got so big, it started to look deformed. It was shaped like a cone, getting smaller up to the belly button. I had to carry him up the stairs, and the last few days, there were even a few times I had to carry him from the couch to the bathroom because he couldn't walk at all.

We totally felt like we had lost our sweet little boy. It wore on us a lot - especially at the end. We were definitely thrilled to be done.

The day after he stopped taking the steroids, we went in for procedures and some chemo in his spinal fluid. That's when his punctures were weeping fluid. The next day, we went back into the hospital because he was coughing and had a fever. That's when he was admitted for the weekend. Over the course of the weekend, he lost two pounds. At the hospital, they measure everything that goes into the body, and everything that comes back out. The nurse told me on Sunday morning that Saturday, he had expelled a liter more fluid than he had taken in. A liter! That's like a pound of fluids!

I noticed yesterday that his eating habits have become more normal. He doesn't mind sweet things anymore. He wants breakfast foods in the morning, rather than corn dogs or mac n cheese. He eats 3 regular sized meals, plus a snack or two. It's such a relief! No more breakfast marathons!

I also noticed yesterday that the swelling in his feet and legs, and in his hands and arms is completely gone. His belly has gone down quite a bit, too. They were measuring it at the hospital every time they took his vitals and there were times it went down by a full centimeter from one check to the next - that's every four hours!

He is back into his original clothes today, although they are sort of tight still.

His belly is still big, but not so huge that it's deformed. His face is still round and swollen, but not huge like it was before.

He can climb onto the potty chair on his own, as of this morning. He can also climb the stairs on his own, but he uses his feet, his hands, and his head (I know, right?!) to get up them, and he's panting by the time he's finished. But he's very proud to be doing it on his own, because he wants to be independant.

The most important change, though, is that he's cheerful again! He's smiling and giggling and telling us funny stories. He wants different activities throughout the day, instead of just watching Spongebob all day. Even when he wants to rest and watch cartoons, it isn't Spongebob at all. He wants to get up and play. He wants to exercise his mind. He plays with toys, and blows bubbles, and plays with his flashcards to learn his letters and numbers.

Yep, life after steroids is good! We're still waiting to hear the results of all that medication, but right now, I'm just happy Matthew is starting to feel better! Now, if he'd just stop coughing we could enjoy his break more!

Monday, August 15, 2011

Helpful Matthew Burr

Well, I guess that's what I get for leaving my laptop logged into an unpublished blog entry. Matthew wanted to help, so he added a lovely ending to my title of "Home," and then he published it for me. What a smart boy! He was pretty proud of himself, and his daddy thought it was pretty funny, so I decided to leave it instead of going back and editing it.

Enjoy!

Homehtyjjjjn j8n9ujjjjjjjjj888jjjmmmmmmmmmmnnnmmmkkkkkkkkkkkklllllll;;;;;;;

Well, that was kind of a whirlwind!

Thursday, we went for Matthew's testing for the end of induction. They drew some spinal fluid to make sure the Leukemia hadn't spread to his central nervous system, and they drew bone marrow to check and see if he's in remission.

The spinal fluid came back clean, which is what the doctors expected, but they will check periodically throughout his treatment. The bone marrow looks good under a microscope, but they had to send it away for more detailed tests. Results can take up to a week before they pronounce him in remission. If he is, we'll move onto our next round of chemo on the 23rd of August.

To explain, a round of chemo is like a set of treatments. He just finished his first round, which was induction. It involved 4 treatments of Methotrexate administered into his spinal fluid, 4 (or 5?) treatments of Vincristine administered into his IV, and 1 treatment of Peg Aspariginase administered into his IV. Plus twice daily doses of Dexamethazone.

So, if he's in remission, we'll move onto the next round, which is called consolidation. We may have to wait until the symptoms of his virus are completely gone, though. So, it could be delayed by a week to let him continue recovering.

So anyway, that was Thursday. 7 hours at the clinic for the spinal tap, the bone marrow aspirate, and also, Matthew got a blood transfusion. Those take a really long time!

By Thursday afternoon, when he was getting blood, he had started coughing. By the time we got home, it was sounding like a pretty productive cough. Thursday night, he stayed up all night coughing. Friday morning, he had a fever of 100.1. Now that doesn't seem like a big deal, and even in the cancer world, it isn't huge. They say if the kids have a temp of 100 for an hour, we should call the clinic. So, an hour later I checked, and it was 100.2. By this point, his nose seemed a little sniffly, too. I called the clinic, and described the symptoms, and they asked me to come in to get him a chest X-Ray and an exam from a doctor.

We got the X-Ray and went up to the clinic. The doctor came in to examine him, and she said he was slightly dehydrated, which is ironic, since he's retaining so much fluid he can't walk. But she also said she couldn't hear anything in his lungs, so she didn't think we had to worry about pneumonia. She wanted to give him IV fluids and antibiotics just to be sure, until they could run some tests. She left the office for like 1 minute, and then came back and said, "I take back everything I said." It turned out there was a small shadow on one of his lungs. She wanted to admit him for pneumonia.

As scary as that all sounds, it wasn't nearly as stressful as you might think. We caught it when it was just some coughing and a little sniffle. It was disappointing to be back in the hospital , though. On Thursday, they told us his ANC (Absolute Neutrophil Count, which determines his ability to fight infection) was 1500, although it's at the low end of normal, it is within the range of normal, which hadn't happened for Matthew since his diagnosis. That ANC count, combined with an 11 day break from chemo, had us really excited, and we had big plans! At 1500, Matthew can go out into public! We were going to take him to a family reunion, and then on a drive through the mountains for a picnic in the forest (Matthew's idea).

So, it was disappointing when those sniffles started, because we knew our plans were shot.

The upside was that we caught it really fast, and the doctors didn't feel his condition was dangerous. They reacted with extreme caution, which is why we spent the weekend in the hospital, but I know they have my son's best interests at heart. They gave him IV fluids and got him rehydrated and did their tests. They found a common virus called Metapneumovirus (see below). It explained all of his symptoms, and since it was viral, there was nothing they could do to get rid of it, so as soon as he was fever free for 24 hours, they let us go home.

This time, the stay in the hospital wasn't nearly as stressful. Last time, we were in the middle of a crisis. This time, we were being cautious. It was much less intense.

When they released him early Sunday afternoon, we decided we still wanted to go to the mountains. So, we piled in the truck with some camping chairs and firewood, and we drove up to Kamas. We bought a bucket of deli chicken, some pasta salad, some chips, and a bag of marshmallows, and found a campsite. We started up a fire, had some dinner, roasted some marshmallows (or as Matthew says, "Oshmellows"), and then it started raining a little, so we left. He was pooped by then anyway, but it was a good time. I'll post pictures later.

Just wanted to update everyone. Thanks for your prayers and support this weekend!!

Saturday, August 13, 2011

Metapneumovirus

Metapneumovirus. Say that three times fast!

That's what's making Matthew sick. The nurse said it's almost flu like, and common during the winter. We all usually get it multiple times in our life - usually before the age of five. It's worse than a cold, but not as bad as a flu. The symptoms are in the upper respiratory system - so it's like a really horrible cold. Similar to RSV.

He does have a little bit of shadow in one of his lungs, but the doctor said it doesn't look like bacterial pneumonia, which is good news. His oxygen saturation has stayed really good, and he's still eating well, so the doctor said she thinks we may be able to go home in a day or two
.



In the meantime, this hospital stay is much better than the last one. He's sitting up and eating with a smile on his face. He rests a lot, but he's happier now, and that makes the rest of it much easier.

Friday, August 12, 2011

Here we go again...

Well, we're here at the hospital - take two.

Matthew has pneumonia. Believe it or not, he isn't nearly as miserable as I would have expected. I know when I had pneumonia, it was one of the most awful things I've been through. I guess that says a lot for what Matthew's last month has been like. He is actually still improving in mood and demeanor from being off of the steroids. I've even seen a couple of giggles tonight - of course, he is on some pretty strong pain medicine.

They haven't said yet how long it'll be or what we can expect. There are several types of pneumonia, and some can be treated, while others have to just run their course. We're still in the process of determining his type of pneumonia. It'll probably take a couple of days.

I'll keep things updated as I know more. In the meantime, we're hanging out in the hospital today - probably for a few days.

I promise, it's not as bad as you might think. It feels more routine than before. Plus, I'm finally starting to get my sweet Matthew Burr back!

Hooray for no more steroids!!!

The Little Things

When you have a healthy child, there are things you don't think much about. Maybe even think other parents overreact to. Like germs, fevers, or the sniffles.

When Mikey, my 9 year old, was really little, he had a seizure disorder. He would get these fevers, and they would shoot up really high in a hurry. From nothing to 104 in a matter of hours. The rapid increase in body temperature would cause him to have a seizure. The first time, they were classic febrile seizures. Febrile is a fancy medical way of saying caused by a fever. Seizures aren't always the scary convulsions you think of when you hear that word. Sometimes, they're small. Most febrile seizures are a single, full body jerk, but they happen repeatedly. Picture this - you know when you are just falling asleep, and you dream that you're falling or tripping over something, and then your whole body jerks and you're awake again? That's what a classic febrile seizure looks like. On Mikey's first birthday, he had about 100 of them. I'm not exaggerating, either! It finally made me uncomfortable enough that I took him to the emergency room. It was January, and it was cold outside. By the time we got to the hospital, his temperature had dropped back down below 100, and the seizures had stopped. The ER doctor told me I was imagining it, or that maybe Mikey was falling asleep and then jerking himself back awake.

I KNEW that doctor was wrong, and I left there extremely angry. I called my sister the next day - she's a Physician's Assistant, and our family's medical dictionary. She said I was right, that it was a febrile seizure, and I should pay close attention if it ever happened again. Well, it happened almost every time Mikey got a fever for the next 4 years. Each time he had seizures, they were different kinds - there are about 100 different types of seizures, believe it or not. I remember one time, he was talking to me, and he stopped in the middle of a word, rolled his eyes up into his head and groaned for about 30 seconds, then he finished his word and sentence. It was so scary! But when I went online, I was able to define it. The last seizure Mikey ever had was his first Grand Maul seizure. That's the scary one that you see in the movies. The first 30 seconds, he was still and stiff as a statue. His eyes rolled up into his head, and he fell over and hit his head. Then for another 30 seconds or so, he had convulsions. It was the scariest minute of my life! I called 9-1-1, and we went to the emergency room. FINALLY, after 4 years of not being able to explain why this was happening to him, the doctor was able to explain it to me.

There's a seizure disorder (and I don't know if he ever told me the name of it. If so, I have forgotten) that affects small children, where seizures are caused by very specific triggers. Mikey's trigger was fevers, but it can be stress, flashing lights, loud noises, etc... There were like 5 or 6 different possible triggers. This is something they outgrow by the age of 5 or 6. It explained everything, and once I was educated, I knew how to deal with it. My nephew had the same disorder, only his trigger was stress. So, at the age of 2, he would throw a fit, and it would cause him to have a seizure. Fun for mom, huh?

The point of all of this is that before the seizures, I was a firm believer that you should not always try to suppress a fever in a child. I still believe that the body has miraculous ways of dealing with illnesses, and one of them is fever. A fever has a job to do, and I always felt like we should let it. I learned that you can't always stick to those types of ideals. With Mikey, I had to become conscious of when a fever arrived, and I had to consistently work to suppress them, in order to prevent the larger of two evils.

I also believe that if you don't allow your children to be exposed to at least some germs (playing in the dirt, or on the germy playground equipment, etc...) they won't have strong immune systems. They need to develop immunities. It's a strange turn of events for me to be one of those moms who carries hand sanitizer and Clorox wipes in my purse. I even have a surgical mask in there.

This week some of the cancer moms have been having a discussion about "you know you're a cancer mom when..." But it's made me reflect on all of this. You never really understand what other people are going through until you're there.

You know you're a cancer mom when a fever of 100, combined with a cough make you feel panicky. That's Matthew this morning.

After writing most of this out, the clinic finally called me back. They want us to go up to the hospital for a chest X-Ray and an exam. Please keep us in your thoughts and prayers! I'll post an update as soon as I have some news.

Much love to all of you, and thank you for your support!

~Wendy, and the Burr family

Thursday, August 11, 2011

A Typical Visit to the Clinic?

I'm sitting here at the Clinic while Matthew is getting a blood transfusion, and watching both Matthew and Justin sleep in chairs, and I'm wondering if we'll ever get the hang of these visits.

We've had three visits to the clinic so far (which is in the hospital, but it's where all of the outpatient chemo patients are seen.) It's interesting. You come in, and check in at the desk. There's a tiny waiting area, but we've never had to wait long. When they call your name, they take you to a wide hallway where they've set up an area to weigh in, measure height, and get blood pressure. Then they take you to a room. There are 8 or 9 rooms that are like a regular doctor's office. This is where they do the weekly examination and put the needle into his port (called accessing). We talk about the 500 questions Justin and I have come up with over the week -- at least the ones we didn't already call about in our paranoia. Then, like 5 doctors and 3 nurses check Matthew, and have the same conversations with us about side effects and signs of infection. This takes roughly 2 hours.

After that is where it starts to vary. If we have an appointment at the RTU (Rapid Treatment Unit - where they do procedures that are not surgical, but require general anesthesia), it will usually be scheduled 2 hours after the beginning of the clinic appointment. The first time, we hadn't gotten his chemo yet, so they sent us down to RTU, then we came back upstairs for the chemo.

At this point, they put us into the last area at the clinic. I think I would refer to this area as the armchair area. There is a wall lined with big armchairs, and each has a rocking chair to its side. There are curtains to separate each one. It's right next to the nurses station, which is in a little room that's connected with the bigger, open area of the clinic. On that first visit, they put us in an armchair to do the chemo, which was just 2 minutes, and then they took the needle out of his port.

The second week, they just kept us in the room for the chemo. There was no RTU visit.

Today, they didn't do his regular chemo (because he's done with induction -- YAY!!), but in the RTU they did a different kind in his spinal fluid when they did his spinal tap (Methotrexate). Then, he needed a blood transfusion, so we came back up to the armchairs. I think the armchairs are mostly used for when the kids need something through the IV and it will take a long time.

Thankfully, today was pretty restful. Matthew ate pizza and then watched Spongebob for a while, then took a nap for most of the transfusion. By the time we leave, we'll have been here for about 7 hours. That's a long day. Especially since Matthew was up and crying for most of the night because he was hungry, but he couldn't eat because he was going under anesthesia today.

So, I guess I still haven't figured out what a typical visit to the clinic is like, but when I do, I'll let you know.

Wednesday, August 10, 2011

How am I?

For my second request, Monica asked me to write about how I'm holding up.

I typically try not to make this blog too much about me, because I want to turn it into a book at the end of Matthew's cancer, and I want it to be for him. I'm the writer of the family, and I'm the one doing the blogging, but everyone is handling it differently, even Justin and I. And I think everyone deserves credit for holding up the way they are. Especially Justin, who has to go to work all day while the rest of us get to stay home with Matthew.

With that said, I do think it's important to show the emotion of it all, and since I am the writer in the family, I try to slip some of that into each entry. Plus, there's something to be said about the way a mother handles something like this. Us mothers band together. I've joined a support group on Facebook that sadly grows at least a couple of times a week. It's made up of mothers of cancer patients who are being treated at Primary Children's, but not necessarily all of them. Right now, there are 104 of us.

The whole first month that Matthew was sick, no doctor ever did any kind of a test to identify the problem. He had a fever for 32 days, and before our hospital stay, only one doctor mentioned how bad of a sign an ongoing fever is, and he still didn't order any tests. He gave Matthew a shot in his leg, a much stronger antibiotic and said to call our primary care doctor if it didn't get better.

That month was really frustrating and upsetting to me. I suffered from insomnia. My work began to suffer. I didn't do my calling the way I should. My house was even messier than usual. The last doctor we saw set up an appointment with a specialist at Primary's, but it was 18 days out. He told us that he thought we should go to Primary's ER the next time Matthew's fever went above 102.

I thought that would be no big deal, since it did that every day, but instead the fevers hovered around 100 for the next ten days. That same doctor gave me a list of illnesses that could cause what Matthew was experiencing, but the one that rang out loud and clear was Lymphoma. Over the course of those ten days, Justin and I both convinced ourselves that this was what was plaguing our son. Justin didn't want to talk to me about it, because he didn't want to worry me. I researched it too, and I was a basket case. I didn't want to tell Justin because I didn't want him to think I was a vicarious hypochondriac. I started hoping that his fever would shoot up so we could get to the ER already. Then I felt horrible for hoping my son would get a high fever! Our fear was that if it wasn't high enough, we'd pay the $150 co-pay just to be sent back home.

It was a very long ten days. There were two times that his fever went above 102, but before we could arrange to get to the hospital, it went back down again. Then, on the night of July 11 - actually at about 3 am on the 12th - I woke up and he felt really hot to me. I took his temperature and it was 103.8. Rather than waver about going to the ER, I just woke Justin up and said I thought we needed to go. So, we got in the car and went. In retrospect, I'm so glad I did. His appointment was still 8 days away, and that makes a big difference in the world of Acute Leukemia. I don't think I'll ever hesitate to go to the doctor again.

In the hospital, I found my own special kind of crazy. Justin was really upset before we had numbers and statistics about Matthew's diagnosis. I was too, but I felt confident that whatever happened, Matthew would live through it. So, I wasn't as scared. I thought I was "broken" because I didn't cry as much as it seemed like I should.

Then I discovered that my reaction was a little more -- unusual. I simply couldn't leave Matthew's side. It made me feel physically sick to think about it. They only allow one parent to sleep in the hospital room, and so we were going to take turns. I was first, and then when it was Justin's turn, as the evening wore on, I started to feel panicky about leaving. Justin wanted me to go buy us some burgers, and I couldn't stand the thought of leaving for even that long. Thankfully, Justin was okay with going home again to sleep, and I stayed again. By the third night, I was a total mess. I needed a long shower and I needed to pack my own clothes, and I needed a night of sleep that didn't involve medicine and vital signs for my angry child.

After quite a build up, I finally left the hospital at 11 that night. I waited until Matthew went to sleep, with the intention of coming back before he was up the next morning. When I started driving, I realized what a mess I really was. I took a few wrong turns, and drove clear out to the airport before I made it home. Then, since it was the first time I had really seen my other kids, I wanted to spend some time with each of them. Mikey was in bed asleep already, but the girls were still up. Allison had TONS of questions, so I explained it all to her, and really helped her understand it. Alaina didn't have a lot of questions, so I badgered her about not hiding her feelings about it. We were in the girls' room talking, and a couple of times, the girls pointed out to me that they could tell I was really tired and I should go to sleep. I guess I wasn't making much sense anymore. Finally, at about 2 am, I was slurring my words. I was trying to explain something, and I literally lost my train of thought in the middle of a word. I looked around, and said, "I should go to bed now," and I got up and went to bed. Allison came and slept in my bed with me, because she wasn't sleeping well. I slept until about 9 am.

I thought I'd be mad at myself for sleeping in longer than Matthew, but I couldn't be because of how badly I needed it. I spent a little bit of time with Mikey, then I did a load of laundry, took a long shower, and packed up my clothes. I was back at the hospital at about 11 am, and I didn't leave again until we were discharged 3 days later.

I'm still suffering a bit from that same kind of separation anxiety. I don't like to leave him for long. I went to a book group that some friends invited me to, and I had to check to make sure no one had a cold before I could bring myself to spend the evening among a crowd. I still brought a mask in my purse, just in case. It'll be interesting when it's time for me to go back to work.

Don't get me wrong, I cry. Some days, that's all I do. The first day like that was the day Justin went back to work. I heard about a boy from my support group who was given a few weeks to live, after a year of remission, and it set me off. He had just gone in for a checkup, and everything went wrong. I cried all day. For like 8 hours straight. Finally, Matthew said he didn't want me to keep crying, and I couldn't stop, so I took a happy pill.

Now, I am NOT a happy pill kind of girl. I'm so afraid of becoming dependent on them, and bottling up my emotions because the pill won't let me work through them properly. But if he is worried about upsetting me, he won't be honest about his pain or discomfort, and I need to be able to help him. So, I let go of my concerns, and just took one.

There have only been a couple of days like those. For the most part, I keep in control, or if I cry I can manage to stop myself eventually. It's stressful, but you adapt. At first that one word - cancer - flips your whole world upside down, but then you adjust the way you're living your life. Things that were important two months ago just aren't anymore. Things that I didn't know existed replaced them. My center of gravity changed, for sure, but I'm doing okay.

The social worker said it takes about 6 weeks to adjust after a family crisis. Today is the last day of week 4. The last day of induction. We're mostly adjusted, I think. Of course, tomorrow may be a cry day, and I may feel differently. That's okay, I have permission to be crazy for 2 more weeks, right? After that, I think I even have a certain number of crazy cards that I will get to play whenever I want. It's all in the deck when you're a mom of a cancer cutie.

Tuesday, August 9, 2011

The Kids

I had my first topic request - Hi Chrissey! I'd love more, so if you have a burning question, please feel free to ask!

My cute friend Chrissey wanted to know how my kids are dealing with all of this. I can't believe I haven't mentioned it before! I don't want to embarrass them by sharing too much personal detail, but I think I'd really like to share some of the more positive aspects.

I do have to say, I have such great kids. I am amazed at how beautifully they have all managed to deal with it. They help me to care for Matthew all day long. I'm not sure how I'll manage when they go back to school!

There's always a lot of running around. I've said this before, but Matthew is constantly either eating, or talking about eating. Before he eats something, we have to sanitize his tray (he has this little lap tray that we feed him on so he can stay in bed or on the couch), then we have to sanitize his hands, and then we have to deal with the food. By the time he's done eating, he's ready for another round. So, we're constantly running. I often send the nearest child, and there has been no complaining about who's turn it is, or who does what the most. They always just do it. It's heavenly!

They each have their own different way of dealing with it emotionally. Alaina always wants to buy him things, and Allison wants to know every detail - I think to reassure herself that he's going to be okay and to figure out what she can do for him, and Mikey wants to entertain him - he's always looking for ways to cheer him up. I have really had the opportunity to see how much they love him through all of this. They always want to be around him, and show him their love. It's really something else.

They each have their different coping mechanisms too, and most of them are positive, like diving into music, but some of them are things we'll have to work on, like jealousy (of all the special attention, not the illness...). The social worker said they all have very normal and expected responses based on their ages and birth order. I'm feeling pretty good about even the negative reactions, because they're getting their feelings out on the table and we're dealing with them.

No one has whined and complained about chores at all, which is such a treat! I've changed the way the chores get done so they'll actually get completed more often. I've also added a lot more wiping things down to the list. We practically invested in Clorox for their handy little wipes. They deal with the extra work really well, because they all really do understand that I'm just trying to protect their baby brother.

All in all, I think this experience has pulled our family closer together as a whole. (See Chrissey? I usually manage to add a silver lining.)

The social worker said that this is a time of family crisis, and it usually takes 6 weeks to get your feet back under you after a crisis. We're currently 4 weeks into this, so we're just about there. I think we've all figured out how we're going to adjust to it, and now we're ready to kick cancer's butt!

Monday, August 8, 2011

Side Effects

I wanted to talk about how Matthew is feeling. It's a hard time right now, but I want it documented. The steroids have horrible side effects. Worse than the Chemo. It's hard to know how it makes him feel, because he can't verbalize it very well, but my sister said when she was on steroids, it made her ravenous with hunger, and she hated everyone and every thing. I think that probably sums it up.

The first side effect we noticed was his mood swings. That started with the first dose. In the hospital, we had to make him take his medicine, and he hit himself in the head and said, "I hate this!" That was hard on us, to see such an abrupt change in his personality. Soon, we realized that he has windows of time when he's himself again. He usually takes that time to apologize for being mean, which breaks your heart even more. He has enough to deal with without adding guilt.

When we got home from the hospital, we were calorie packing (sneaking extra calories into his food whenever possible by doing things like adding extra butter, and using whole milk), because the nutritionist said he needed to gain some weight. Within a couple of days, his appetite swung like a pendulum from never hungry to always hungry. It became really easy to meet his calorie count for the day. And he wanted all salty foods. Corn dogs for breakfast and such. The first nurse said to avoid sodium, but go ahead and feed him as much as he wants. All the moms in my support group said that nurse was crazy, because salt is all he wanted. So, at his doctor's appointment a few days later, I asked them, and 3 different people said to feed him what he's craving.

By now, he eats constantly. If he isn't eating, he's talking about eating. And he has imaginary cravings - he wants us to feed him foods from cartoons that don't really exist.

Because of all this eating, and because steroids cause you to retain water, which is compounded by his cravings for salty foods, Matthew has gained a lot of weight. Probably 15 pounds by now, which is really a lot for someone who started out at around 30 pounds!

So, our little boy is rather chubby right now. It's concerning when you look at him, and it's hard to see him this way, but the doctors have said repeatedly that this is to be expected, and we should keep feeding him what he wants.

His belly sticks out so far that his belly button is almost completely flat. You can see a vein in it. His ankles are swollen like mine were with my worst pregnancy. He has a double chin. He has gone up two clothing sizes.

Worse than appearances, though, is what it's done to him physically. Another side effect of the steroids is muscle atrophy, which makes your muscles weaker. He has fallen down a couple of times while just walking. He can't walk up the stairs very well, and I'm worried he'll fall down, because at least once a day, he tries. He can usually do it, although you can see that it's really hard for him, but sometimes he calls out to me to come help him. A couple of days ago, he tried to go down the stairs alone, and he fell backwards. Thank heavens he landed on his bum, and I helped him. My biggest fear for him right now is that he will tumble down the stairs.

He's uncomfortable all the time because he's so big. I equate it to the last couple of weeks of pregnancy, only worse. He's swollen all over, and he's so big he can't really move around. Just to roll over in bed takes him some serious effort. He needs help up onto the couch, the bed, and the toilet. If he's laying down, and you need him to sit up (like to take his medicine), it takes him about a minute, with lots of grunting and groaning, unless you help him.

In contrast, the side effects of the Chemo have caused some bone pain, which is easily managed with pain medicine. They have also caused some issues with his bowel movements, which are manageable too. Also, his hair is looking pretty thin, but there are no bald patches, like I hear you should see when they start losing their hair.

On the bright side, Induction ends Wednesday. The doctor said that most of Matthew's water weight will disappear in a week or two, and the food weight will come off easily, too. His moods should return to normal soon, too.

This Thursday, he will skip his usual Chemo treatment, but will be having a couple of procedures. They will do a spinal tap and withdraw spinal fluid to be tested to see if the Leukemia has reached the Central Nervous System. They will also administer Chemo (Methotrixate - I probably spelled that wrong) into his spinal fluid. The other procedure will be a bone marrow aspirate. The first one since his diagnosis. This will tell us how well his treatment is working. By Thursday, he is supposed to be in remission.

Can you believe that?! Remission. That fast.

So why, then does his treatment last for another 3 years and 2 months? The rest of that time is spent resetting his bone marrow to make healthy blood, and that's how long it takes. So, even though Matthew may be cancer free, he still has years of treatment before he's done. And the treatment will continue to cause him to be immuno-compromised.

Some of the other moms say the hardest times come after the most intense treatment is over. What happens is they get their hair back, and their blood counts start to come up a little, and you can take them out a little more. You can do things like go to sacrament meeting with a mask on, or go to family parties, if you're sure no one is sick. People see the kids and they don't look sick anymore. Their weight has been through the ringer - from super chubby like Matthew is now to undernourished with ribs showing - but it has now normalized. And people don't understand that underneath all of that healthy looking cuteness is still a battle being waged in the blood and marrow. So, they relax. They aren't so worried about germs anymore, and they may pressure you - the child's parents - to spend time around sick family members because of some special occasion or something. They also relax on hand washing and hand sanitizer. This tends to be the time when a lot of parents have to stand their ground.

I think I'm already preparing myself for that conversation with my dear, sweet mother.

Saturday, August 6, 2011

Wow! It's been a few days since I've written.

Wednesday night, Matthew had insomnia, yet another steroid side effect. He usually puts himself to bed, a little earlier than he used to go to bed. But Wednesday night, he just couldn't sleep. It took until 9 am Thursday morning to get him to sleep.

Then Thursday, for simple reasons, Matthew's Dr. appointment was much longer than expected. Nothing was wrong, but we had to wait on the Chemo, and redo his blood work to make sure it was right.

By the time we got home, we were all exhausted. Justin and I went upstairs to lay down, and Matthew was having a rough moment in the bathroom. He doesn't throw up, but sometimes it hurts him when he has to go to the bathroom. So Mikey came to get me, and our neighbor came with dinner. It was the most chaotic moment! Matthew was in the bathroom crying, and I was trying to get him some medicine. My neighbor was bringing dinner in, and she put some juice in the fridge, which is overflowing full because I need to clean it out, and she bumped a container of watermelon chunks, which of course fell and burst open. So, we had a mess on top of it. Her kids had been so excited to make Matthew dinner, that they were looking around to see what was going on, and Mikey was attacking them with hand sanitizer. My poor neighbor probably thinks my house is like that all the time!

Her dinner was so cute! She brought tiny sandwiches on homemade bread, with cocktail umbrellas in them, corn on the cob, and a big braided bread stick for Matthew. And she made Mister Potato Head cake pops - they are really adorable!



Then, my nephew Cody came with his girlfriend Jenny. Jenny has spent the last week or so making Matthew a new blanket. It's so cute! It has penguins on it, and it's made from the softest fleece I've ever felt!


It really amazes me how much help is still rolling in. In the form of school clothes, and dinners, and taking the kids out. People want to clean, and they send money. There are cards in the mail, and phone calls, and invitations to do fun things so we'll keep our sanity. My counselors have taken over primary without asking for a thing from me, yet when I asked to do a sharing time, they turned it right back over to me, regardless of anything they had planned. Our ward has arranged to have the sacrament brought out to us. There are fundraisers being planned, with so many people willing to donate their time, talents, and resources to make them successful.

If there's one thing we've learned through all of this, it's how to accept help. Before, we would have had too much pride to accept all of these things - especially the money. But now, things are different. Money is just a means to an end. We have to pay the medical bills, and we need a place to live, and the kids need clothes, etc, etc... But the thing we really need to devote ourselves to is our family.

The hospital assigns all of the cancer families a social worker. She's really very nice, and she's there to make sure we know what resources are out there for us. She checks in on us to make sure we're adjusting okay. She told us on Thursday that a cancer diagnosis is considered a crisis, and it takes at least 6 weeks to adjust to a family crisis. We're only halfway there. It's interesting, the stages we go through. Every time I think I've adjusted, I have one of those days. The kind of days that provoke tears at every turn. Then, I work through it, and something else crops up - or nothing, but I get emotional anyway. Our social worker said that's expected right now. It made me feel better.

I decided I have a few "crazy" cards that I have permission to play. At least for 3 more weeks.

Wednesday, August 3, 2011

A Walk to the Park

The last few days, Matthew legs have been a little weak - another side effect of the steroids, compounded by the rapid weight gain. But he's bored, too. He's tired of being stuck in the house. Since the first day in the hospital, he's been asking us to take him to the park. The thing is, parks are disgusting, germy places. When his blood counts were so low, there was no way in this world we would have considered that.

Well, last Thursday at his appointment, the doctor told us his counts are up. That doesn't mean he's out of the woods, by any stretch of the imagination, but it's still a good thing. To counteract the high blood counts, however, the steroids weaken the immune system's functionality. So, while it's safe enough to take him out to places like that, he still shouldn't be in big crowds or anything. But the doctor specifically said that we shouldn't stop living our lives. We should let Matthew play and be a kid.

So yesterday, in the middle of the day, when I felt pretty confident that our neighborhood park would be empty, or sparsely populated, I decided to take him. He has this motorized bike that we gave him for Christmas. It honestly reminds me of a Jazzy - those wheelchair/bike things for seniors - only it's his size.

This doesn't show how Jazzy-like it is, but you can see, it would definitely be easier for him to ride this to the park than to walk.

Originally, I intended to put the bike into the car, and drive us to the park, and then let him ride the bike at the park. But they resurfaced our road yesterday, and we couldn't drive on it until the road blocks came down.

So we walked to the park. No big deal, right? It's maybe 4 blocks away, and he had his little bike to ride on if he got too tired.

In the driveway, I cleaned off the bike with like 15 Clorox wipes, and then let him sit on it. He pushed the gas pedal, and it surged forward, and freaked him out. He was NOT going to get on it. He said he'd ride it when we get to the park. So, I dragged it next to me as we walked. I would say I rolled it next to me, except that of the three wheels, only two roll freely. The other only goes if you're pressingo the gas pedal, or putting weight on it, and pushing hard - and then it sounds squealy and loud.

So, I dragged the bike next to me as we walked, and Matthew walked the whole way.

When we got there, he climbed up the stairs, crawled through the big tube, climbed more stairs, and slid down the slide. Then he dug in the sand for 30 seconds, and declared that he was ready to go home. He still refused to sit on his bike, so I dragged it beside me as we walked home, too.

By the time we got home, he was moving very slow, but he never once asked me to hold him or help him. He is one seriously tough kid!

Even though he didn't want to play at the park for long, he did have a good time. He wants to go for another walk today.

Tuesday, August 2, 2011

The "Matthew Burr" wall

This is the "Matthew Burr" wall at the daycare. I'm waiting for permission to post the pictures with all the kids, but I thought I'd share this. I got this by email this afternoon. Matthew said, "Aww that was really nice of them!"

Also, I should mention this: All the kids at the daycare call him by his full name. It's an affectionate thing. I don't really know why, but it always stuck.

I know I'm totally dating myself here, but when I was a kid, my brother used to make me watch Cheers with him. And I always think of when Norm would walk in and they'd all yell, "NORM!" This is how I think of the kids at Matthew's daycare when they see him, only it's, "Matthew Burr!" It's really quite adorable.

Don't we all want to go where everybody knows our name? (Okay, that was super cheesy, but I'm leaving it anyway.)








The Matthew Burr Wall









In the middle of the heart is a picture of Matthew, but it's kind of glossy, so it might be hard to tell in this shot. More pictures of this to come later.

Rain!

It seems I finally skipped a day of blogging. I thought about it a couple of times yesterday, but then I was too tired.

On Thursday, on my way out the door for Matthew's Chemo appointment, I got a phone call reminding me to send in the papers for my FMLA leave from work. I had totally forgotten! Today is the day they're due, and they said the due date could not be extended. So, Friday I dug through all my papers till I found them, and then yesterday I took them up to the hospital so a doctor could fill them out and fax them.

That drive up to the hospital was scary! It was raining really hard. I couldn't see anything, and I was hydroplaning all over the place. There were waterfalls coming down the hills onto the roads, and huge puddles to drive through. I was a shaking mess by the time I got there. But I dropped off my papers, and they said they'd get to them yesterday, so at least my job is safe!

I was in the hospital for 20 minutes, and by the time I got back out, the rain had stopped. You couldn't even tell that there had just barely been all that flooding. It was so weird!

So, since I was out so early in the morning, I decided to run some errands. The rain came and went all day, but the worst of it was over. I got home around noon, and soon after I got home, Matthew started to really have some belly pain. They've given him prescription pain medicine, and they said to use it for any kind of pain. I can't give him Tylenol or Ibuprofen, because they can mask a fever. A fever is a sign of infection, which Matthew doesn't have the ability to fight right now, so we have to really watch for fevers. If he gets one, we have to go back to the hospital and, from what I can gather, they will administer IV antibiotics until the fevers are gone for a specific amount of time. It pretty much means you're guaranteed another week long stay at the lovely Hotel Primary's. Anyway, his prescription says to give him 1-2 ML for pain. I always give him 1, and then an hour later if he's still hurting, I give him another 1. I usually don't have to give him the second dose, but the couple of times I've had to, it worked perfectly. Yesterday, he only had .5 ML left. I gave that to him, but it wasn't enough, and his pain was getting worse. So I called the clinic.

Turns out pain medicine can't be called into my local pharmacy, because it's a controlled substance. You have to either get a paper copy of the prescription, or pick it up at the hospital's pharmacy. Sooooo... I got to drive back up to Primary's.

It felt like such an unproductive day! But on the bright side, I got Matthew's medicine, and this time, they gave us plenty. Last time, it was only a few doses.

One really great thing about yesterday, though, was a visit from Matthew's old teacher at the daycare. We really loved Matthew's daycare, and one of the hardest things about all of this is that he can't be with his friends anymore. He's so well loved there. It's always felt like we were doing something really special for him by bringing him there. He's so much younger than his brother and sisters, and he doesn't really get much at home to help with his social skills, so daycare was a great way to help him learn to share and play with other kids his age. Plus, they do so much teaching there. He's already reading short words, like stop. I'll just plug the daycare here - it's Small World in West Valley. They're fab-u-lous!

Anyway, he can't go to daycare anymore. So, some of the teachers came to see us at the hospital, and then one of them found me on Facebook. They all keep updated through her. Now, she's following the blog, too. (Hi Caroline!) She came out to visit yesterday, and brought Matthew a picture her class had made for him. We love that stuff, and it really is the highlight of his day.

I'll leave you with something that I thought was so sweet, it made me cry. Caroline told me that the wall where they display the artwork at the school is covered with a message for Matthew. It says they miss him, and all the kids have put up a hand print on there. Then, it has the blog address. His whole school is thinking of him every day, and they've dedicated a wall to him. I think it's the sweetest thing! Caroline said all the kids ask about him all the time.

In Primary, too, the kids miss him. I've been told that they always include him in the prayers. And these kids are doing it spontaneously. The cute little Sunbeams keep asking about him. One of his friends from Sunbeams is helping his mom to make us dinner on Thursday, because it's a Chemo day. She and her brother are so excited to help their mom to make something special for Matthew.

I figured out really quickly how much all the adults in our lives have been supportive, but it took me until yesterday to really realize that the children are helping us a lot, too. Even the tiniest of them.

It amazes me how much 3 year olds understand about love.