Wednesday, April 22, 2009
The fog... Day 161 22APR09
Every week Joshua, as part of his schoolwork, gets a question that he is supposed to write an answer to. I was leafing through the pages he has completed in the past few months this afternoon and this is what I found. These are in his own words.
I wish I could build a:
"Skyscraper out of legos. I will use red, green, and blue. I will make it 20 feet tall."
When I get money:
"I will put it in my wallet. I am going to buy a house a car and food."
I have trouble learning how to:
"Read. My brain is not working. It is very frustrating."
The last one was from this morning.
There is a phenomenon knows as "chemo fog or chemo brain" which affects the brain's cognitive ability to work properly . We have watched him have difficulty doing simple things or remembering if it is his turn in a game. We hope and pray that it is only temporary and that once the chemo is done the fog will dissipate on a fresh breeze. Only a long wait will give us that answer. It is hard to watch him struggle with his mind and his memory. It ebbs and flows and some days are worse than others. Yet it persists. Another frightening reminder that we are not even close to being out of the woods yet.
Today was a good day in most other respects. Josh had school this morning with Ms. Lydia. It was the first time they have been able to get any work done in quite a while. I am confident that he will catch up over time. He tries really hard and I think that it frustrates him more than we will ever know when it is difficult for him.
He took a long nap this afternoon and woke up a little groggy. We had dinner and then headed off for a short walk on the golf course so he could get a little exercise. We didn't get very far before Joshua got tired and was complaining that his hip and legs hurt. We took a breather and sat in the soft grass on one of the greens. It was a really pretty evening with a nice breeze and the gentle warmth of a setting sun wrapped around our shoulders. I cherish those little moments we have like that. Just the two of us sitting close, Josh leaning back against me in the "daddy chair", staring out at the world. We sat quietly for several minutes. I kissed the top of his smooth, warm head. The world was at peace for a few brief minutes before we had to break the spell, get up, and start walking for home.
Tomorrow Josh heads back to the clinic for a CBC to see if his counts have stayed up. If they have he will get the last round of chemo for this treatment phase. Then it's eleven days off before we start delayed intensification. If he qualifies he will get IV Methotrexate and Vincristine. Then we wait and hope that his furnace stays under control. So far he has not had any more trouble with his digestive track. He has been eating okay and has not been nauseous or complained of any stomach pains. It looks very probable that the mystery of his stomach problems will remain just that.