I just have to give credit to all the cancer kids out there. I have learned so much in a world I barely even knew existed. If you are experiencing this for the first time with us (I post often, probably too often :) so you probably feel like you know a lot more about it too) I thought I would share some of the things that these kids go through, because they go through so much and people have no idea. I joined an online group of parents all with children that have ALL, and I have learned so much from their experiences. They are amazing people, most of them have suffered more than we have (they have been at it much longer) and the children have suffered so much more than Brinley. I know of a girl who was hospitalized for weeks with sores in her mouth, through her throat, to her asophagus, through her intestines all the way to her rectum. Her body could not heal them because she had no white blood cells, so she had to lay there with a morphine drip for weeks, in severe pain, waiting for her body to build back up the white blood cells so she could heal. And then start chemo again. She was about 3. I know of a girl who went through chemo at 2 years old, only to relapse, and go through it again at 7. All of the torture, again, only much more agressive. And she is smiling in her pictures. I know of a 9-year-old boy who was beginning induction, ready for the fight, got diahhrea, went to the hospital, and did not make it. There is a boy who is nearing the end of his treatment and is suffering with sores between all of his fingers, under his fingernails, and cannot physically keep up with the other kids his age because of all the chemo.

At clinic they had a wish wall up, where the kids could put down a wish. One of them said "I wish there was no cancer", another read "I wish I didn't have stupid cancer". It is heartbreaking to be this close to so many children in pain, emotionally, physically. How did I never see this before? Sure, I knew it was out there, and my heart went out to those who suffered from it, but it is so different being surrounded by it. Did anyone else watch Extreme Home Makeover yesterday? They rebuilt the house of a boy named Job who got leukemia when he was 4, with a 10% chance of survival. He survived, but because of the chemo, ended up with lung problems, being on a ventilator for a year. Then he had to have a double lung transplant, and is still suffering in a wheelchair, taking many meds that make his face and body swell up (looked to me like those awful steroids!). David and I had tears in our eyes the whole show (okay, so David had tears in his eyes, and I bawled the whole time!) It was soooo sad and inspirational at the same time. This little 10-year-old boy had suffered SO MUCH in his short life. You could see how sick he was. His parents were amazing. His mom said something that I have absolutely discovered to be true. She said that one good thing that has come of this is that she has learned to appreciate the things that everyone else takes for granted. She said the heard her kids up late giggling one night and just laid in bed and cried, loving every second of it. His Dad said he wishes he could just take the look on his son's face when he saw his room and bottle it up, then open it whenever he needed to see his smile. Let me know if anyone else saw it. It was great.




All these kids suffering, in pain, not living normal lives. I just wanted to recognize our cancer kids and give them the credit they deserve, for having to go through so much and such a young age. They are amazing and we can all learn something from these tough little kids.

I'll post an update later today after all of our doc appts, we have a couple today, so check back later!

2 comments:

Matt said...

Don't ever think you're posting too much. As distressing as it can be sometimes, I'd much rather be as close to you as I can while you're going through this. I know just what you mean by being devastated and inspired at the same time. That's how I feel reading your post. I talked to one person at church yesterday who said she had to break it up into sessions because she cried so much she had to stop for a while. But she was so grateful to know what you are all going through. It is truly inspiring. Don't slow down a bit!! I love you.

JohnH said...

Dang, it happened again. This time Matt left his account logged onto my computer. That previous comment was from me. Sorry.