Just hanging out with Joel at the hospital in Vernon. His counts have been dropping and he was in dire need of a transfusion. He had blood work done here on Friday, ANC was 2.2 (they want to keep it low for the next three years, between 1 and 2), Platelets were in the 90's, and hemoglobin was in the 70's (kind of low but they just wanted to see if it was moving up or down). Joel was tired but seemed to be holding his own so they scheduled more blood work for this coming Thursday but said to go in earlier if he started feeling worse.
Joel started feeling even more tired than usual, he got dizzy when he stood up, the nausea and headaches had returned, and he said that it felt like his heart was racing. So I took him in this morning to see if the counts were still dropping, and they were. ANC was a 1.2, platelets in the 50's (he is getting nosebleeds and when he gets a needle it doesn't want to stop bleeding but I don't think they transfuse them until they drop below 30), and the hemoglobin was in the low 50's (kind of scary low). That is why his heart was pumping so fast, working extra hard to supply oxygen to his body. His hands started to look very transparent and his face had little color...... he has had one bag of blood so far and he is starting to look a bit better.
I usually know when his hemoglobin is dropping cause he gets very grumpy and irritable but this time that didn't happen. He just stayed his normal happy and go with the flow kind of self.
I talked to his nurse in Vancouver this morning. She said that Joel's counts are quite unusual. We have been told to stop all the oral chemo until next week when he comes in for the Vincristine, they will check his blood counts again and take it from there. Karen said that while Joel's reactions right now are strange, it is not unheard of for some kids to have a rocky start at the beginning of Maintenance.
When Joel finished his intensive treatment and when maintenance started, the doctors and nurses and staff at Ronald MacDonald house told us to go out and celebrate, to have a big party. Joel was feeling so wretched and miserable, the last thing he wanted to do was go out and celebrate. The recovery from the treatment he got in November and December just seems to be taking so long this time. His weight is still low, he hasn't put any that he lost in December back on yet. I am trying to bribe him with pie, cookies, baking and yummy meals but his appetite just hasn't come back yet. His legs still bother him and his foot seems to be doing funny things. His hands shake when he eats or does anything. His hair has not started growing back yet and his eyebrows and eyelashes have just started falling out. When I give him a hug, I swear I can feel every bone in his body. And now he has started coughing.
I guess, somewhere in the back of my subconscious, I thought that life would be normal and easy during Maintenance. I thought that life would go back to being normal. I have been told that life will never be normal again, that we would have to find a new kind of normal but I don't think I have come to terms with that.
Grant has gone back to work now and is getting back into his old routine. Adam and Ari are settling back into school. They are busy studying latin and algebra, writing essays, reading history, building rockets and trying to blow things up. It is mostly good. I think Adam has some anxiety issues still that we will have to keep dealing with.
But I can't sleep, when I do sleep, I dream of hospitals and cancer. I have even resorted to taking some of Joel's pills to help me sleep. I have tried to sit here and write so many times but it just feels too depressing. My mind races and I can't seem to shut it off. My feet just can't seem to find any solid ground yet.
Last year I didn't make any New Years resolutions, my focus was to get thru the year. I clearly remember the first time I met one of the families that we got to know over this past year. I was in the family kitchen at Children's Hospital making Joel something to eat, another kids dad came in to fix a meal too. We started chatting and he said that they had been going thru treatment for a year already. My first reaction was "I am not doing this for a year!" And here I am, a year later still plugging along.
I did make a New Years Resolution this year, it was to start doing creative things again. I used to draw and paint, knit and play music. I am looking for a small apartment sized piano for the living room and then the plan is to learn to play again. Is playing piano like riding a bike? Does it come back easily?
I have started knitting a sweater for Sienna, it is looking very nice. I have been doing lots of reading too, it helps me escape. Mom gave me a novel, "The Russlander" and then I read the "The Steppes are the color of Sepia" again. I like reading about my familys history, just wish I had a book about my dads side of the family too. Right now I am reading some of my old favorites by Leon Uris.
Joel is busy studying to get his Class 1 learners licence. He has applied for an apprenticeship with Hydro. His calculus course should be coming in the mail in the next week or two. Life is moving along. Brianna and Sienna are coming for a week long visit starting this Saturday, I am so excited. She has promised to make us all a cherry cheesecake. I think I will whip up a double batch of fruit perogies with cream sauce, that should put a few pounds back onto Joel.
I think that spending the day in the hospital with Joel will be good for me. Maybe it is just stress that is lacking in my life and this will make things feel normal and I will be able to sleep well tonight. We should be out of here around 8:00 tonight.