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Monday, June 30, 2014

The Beginning of the End

Tomorrow, Matthew will get his very last lumbar puncture. I long ago lost count of how many he's had. This is the first of the last things. The beginning of the end.

His treatment is almost done.

I decided it's time to work on tying up the loose ends on this blog. So, I'm going to start with an update.

Our sweet Matthew had a quite a year this year. This cold and flu season was rough. Last year, he was in preschool, and when he started to come home with a new cold every week, we pulled him out of school for the rest of the season. This year, it was Kindergarten. It wasn't the same. We couldn't just pull him out. Also, He got to a point during the summer before Kindergarten where it became clear that he couldn't be cooped up in the house anymore. We had to stop stressing out about every little bug he caught.

So, he went to daycare in the mornings and Kindergarten in the afternoons. He loved it. He enjoys feeling like a normal kid. He got pretty ticked off, actually, if he had to miss a day, so I would end up taking him to daycare whether I needed to or not. It gave me time to get homework done anyway. For summertime, we have him in daycare two days a week, simply for the social interaction.

There are many upsides. He's happy. That's the biggest one. His oncologist once told me we were saving his life so that he could live it, and I should let him do that. It's really beautiful to sit back and watch him live. He really appreciates it. He loves life. What a gift for a six year old to have!

The downsides of all that exposure, however, are sort of scary. He has a new cold every week. Sometimes two in a week. He missed about a third of Kindergarten and he was admitted to the hospital twice last school year. Prior to these admits, he hadn't been inpatient since two months after diagnosis, so that was pretty shocking. Also, his chemo regimen is like a yo-yo. On, off, on, off, 1/2, full, off, 1/2, and so on. He hasn't stayed on full chemo for more than two weeks since before the blood infection last summer. That scares me a little. What if we aren't suppressing his bone marrow enough? But often, we check his blood and he's neutropenic (dangerously low infection fighting white blood cells) or really close to it, so he must be suppressed.

Faith is taking the first step even if you can't see the whole staircase. His doctors know what they're doing, and they've saved lots of kids before him and will save lots after him. They told me to send him to school, and they're right. It's been good for him, as hard as it was to know he was at higher risk for so many germs there.

Matthew doesn't remember his life before his cancer. I realized this a few months ago, when talking with him about the end of his treatment. I told him that they'll take his port out just before he turns seven, and he was horrified. Why would anyone want to take his port out?? As far as he can remember, it's always been there. It opened a whole new can of worms, actually, because now he's afraid that when they cut him to get it out, he'll bleed to death. Our amazing child life therapist up at the clinic has been helping me talk with him more about this to help him wrap his mind around it.

Now that it's summer time, the exposure to germs has lessened, although he's been coughing now for like two months. We've been unable to identify the cause of the cough, and we've tried multiple allergy medications. It's starting to feel like one thing after another goes wrong with him, and I wonder if that's what late effects are like. Just a general lack of good health. I don't know, but I do know he's tired of it. Poor kid. But all things considered, we'll take some coughing, compared to where we began.

His doctor finished her entire residency. We were sad to see her go, and some of the other moms and I got together and made her this video:

http://youtu.be/OqGoOjB1dCM

And for your viewing pleasure, here are some pictures of the last year:

CureSearch Walk

Sunscreen

With his oncologist, Dr. Jasmin Jensen

Dr. Jensen's residency is over, and Matthew loves her, so he wanted to tell her goodbye. The message says, "From Matthew, Goodbye." and it has a picture of him with me, and his two doctors. He loves them. 
Dirty face and silly face after camp Hobe.

Closeup of the Camp Hobe dirty face.

First lost tooth.

Soooooo tired after camp!






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