Noah's oncologist told me last week that he has done remarkably well. And he has, but this last round (the last 3 weeks) has been really hard. He was back on the steroids and we seen it full throttle. The mood swings were way worse this time. He would scream at us and demand things. Throw himself into fits of rage. He was exceptionally hard on Holly and would say really mean things to her. He ate alot, but certainly not like month one. He has been up the last few nights to eat twice, and has a really hard time sleeping.
Yesterday was one of our hardest days yet. He was in alot of pain in his back. He couldn't sit stand or walk. He just rolled in his bed crying and screaming. It was awful to watch. Its so hard to see your child in pain and there's nothing you can do to take it away. I spent an hour trying to get a hold of an oncologist to tell me if I could give him morphine. He can't have tylenol or advil because it could mask a fever. And a fever is an emergency which we would then need to take him to Children's. Combined with Noah's pain, he is then screaming at me demanding that I call the doctors. Finally the Dr on call calls me back and says yes I can give him morphine. I by chance had 3 pills left over from when his second port was put in so I gave him one. But they said to give it every 2hrs to get on top of the pain so I had to call my family dr and get a prescription for more. It took just over half an hour but the morphine started to work.
I knew this round was going to be hard. They told us it would be, they told us to expect it. But even if you think you are prepared for a rough road, nothing prepares you to see your child sick and in pain. Its excruciating to watch.
As I was rubbing his head, trying to console him, I looked at my hand and it was full of his hair. Again something we have been preparing for but is hard when it happens. Chris shaved alot off his head last night, and its now very thin. It won't be long before its gone. It was easy to 'forget' that Noah was sick. He didn't look sick. He didn't really act sick. He was mostly able to go to school and play hockey. But not anymore. Hockey will hopefully resume in the new year. But for now, its hard to get him off the couch. With his hair going, its easier to see the sickness. To recognize it. And for others too.
Right now his counts are low, but hopefully they will build back up by next week. If they are up, he will be admitted Tuesday December 4th for one night. They will administer a new chemo drug that he has never had, and keep him over night on IV. Then on Wednesday Dec 5 he will be put to sleep for a spinal. I think then we will be given another chemo drug that we give everyday orally at home for a month. IF he is on track. Normally, kids need more than this one week break between the steroids. Some need 3 weeks. Pray that Noah can stay on track and be able to continue treatment with no delays. Its not the end of the world if its delayed, but it would be nice to have this phase over with.
Please pray that Noah will be well for Christmas. That we can be with our family like always. I feel like some things in life become more serious when you have a seriously ill child, and other things need to be taken more lightly. There is so much we are learning in this process. Its changing all of us, our families, friends.
Other prayer requests: Coltan has been diagnosed with having a CCAM (congenital cystic adenomatoid malformation) combined with low bar emphazema. Nothing to worry about now, but if symptoms arise we may need to do surgery to remove the malformed part of his lung. Most children with this need surgery at some point. And Holly is taking the brunt of Noah's moods. She handles it well, but she is a girl and her feelings get hurt very easily. She does seem to have a good understanding of the medications and that that's what makes Noah so mean.
Please pray for strength for Chris and I. Its hard to see our children be ill. To have words like chemo, survival rates, and surgery be part of our daily vocabulary.
Thank you for all your support. We feel your prayers everyday. Without them we couldn't function as we do. On a side note, we have been given the date for Noah's LAST chemo treatment. September 11, 2015.