January 21, 2009

I had intended to write an update yesterday, however I felt pretty rough after we returned from the hospital and rested for most of the day. Today's update captures the details from Dane's Tuesday appointment at Cancer Clinic and our first day at home without dad (he returned to work today).

Given Dane's hemoglobin count last Thursday was only 78 (normal for his age is 115 - 155) and his platelet count was around 130 (normal is 100 - 500), we and the doctors/nurses expected he would need a second blood transfusion yesterday. He didn't have a lot of "zip" last Friday, however he picked up steam as the weekend progressed (as was evidenced by the pictures of him playing in the snow with Ashley and skating on our rink). His skin color, particularly his lips, was very good when we arrived at the Cancer Clinic and the doctor once again said he looked "great". Based upon his appearance and check-up, his pediatric oncologist didn't think a transfusion would be required, however he needed to get his finger poked and have a complete blood chemistry done to make sure. After about an hour wait, the doctor confirmed no transfusion was required as his hemoglobin had risen by 10 to 88 and his platelet count had doubled to 260 (well within the normal range). This was very good news as it indicates his bone marrow is functioning much better than it was two weeks ago and making more "good" cells than "bad" cells at this time. So to our pleasant surprise, our appointment only lasted two hours versus the six or seven we thought it might take. We were home in time for lunch and Dane spent the afternoon hanging out with dad, playing games and engaging in a good game of "mini-sticks" (above photo). We even managed to convince Dane a short walk to pick up Ashley from school would be good for him and he obliged without too much complaining. To keep his mind occupied, he and I started a 500 piece adult puzzle Monday night that I expected would take him days to complete, however between Dirk, Ashley, he and I, it was done by 9:00 pm last night! His grandpa is a puzzle man so we are looking for him to send some more challenging ones our way.

Dane's appetite the past few days has been voracious (to put it mildly) and the food cravings have definitely surfaced. Everything he wants lately has cheese in it - cheese sticks/slices, grilled cheese, Cheese Whiz on toast, pizza, etc. Today it seemed like I was in the kitchen half the day feeding him ... I can't imagine what it will be like if he's still this hungry in a few months when I've got a new baby to feed! His cheeks and tummy are "filling out", although he hasn't gained much weight yet. The few pounds he went up last week seemed to be likely more attributable to all the fluids, as he was down to 46.5 lbs yesterday (he was 45 when admitted two weeks ago). If he keeps eating like he is though, the numbers on the scale will be going up, up and up!

Just as the steroids have affected his appetite, today they really affected his mood. We were having a peaceful morning and then around 10:45 he became very agitated and emotional. When he is in this "state", it's very difficult as he basically hates everything and everyone - particularly his mom who is closest to him. After about an hour he calmed down and then in a very mature way told me how sorry he was for making so many hurtful comments. I explained that it is the steroids and not him and that I understand and forgive him. We shared a big and tender hug and had a good afternoon, complete with a solid hour and a half of homework. The emotional wear-and-tear of this outburst really affected Ashley and my mom as well, as they arrived home for lunch as I was at my breaking point. Although I'm realistic there will be more days like this, I'm really hoping there aren't too many - I'm not sure my mom heart can take it.

We are back to Children's Hospital for his third bone marrow test tomorrow morning as well as his chemotherapy treatment. The cancer nurse will also be taking a blood sample to analyze how well Dane's liver might react to a medicine that will likely be used in the next phase of his treatment. The early indication is he might have a genetic predisposition that will make this medicine harder for him to take, however the doctors won't know this until the blood results come back.

We continue to hear from many people that our blog updates are serving their purpose - keeping lots of folks updated all at once. We are thankful this tool exists and are finding it very therapeutic to tell our family's story in this way.

Thanks for your continued positive thoughts. Please "tap" into them for us tomorrow - the results of Dane's day 15 bone marrow are very important.

Warmly, Janie and Dirk