March 14, 2012

Today was SD's last appointment in Interim Maintenance I. He received his monthly transfusion of Pentamadine, his two chemo meds, and an EKG (all chemo patients undergo an EKG periodically just to monitor whether the treatment might be affecting the heart). He has a 2 1/2 week break before beginning Delayed Intesification on March 29.

SD's nose started running the day after his last clinic visit. It continued building up for a couple days, causing quite a cough, and he developed a low-grade fever on Thursday. Since a low-grade fever could send him to the hospital for a couple days, we were a bit concerned; his temperature did not quite reach that point, however, for which we are very thankful! Since he never lost his energy during his cold (or whatever it was), he would not have been happy being confined to a hospital room for a couple days. He is still hanging on to that cough and has a slight wheeze which goes away in different positions, but is mostly recovered. It was the first sickness he's had since the virus that initially sent him to the hospital and ended up with a leukemia diagnosis. We are glad that he's been well for this long and that it was not serious. We expect his counts to go down during the upcoming Delayed Intensification phase, however, so we'll need to keep him at home for much of that period.

Currently, SD is looking forward to the arrival of his Grandma Snell and Uncle Josh in a couple days. We hope that all signs of his little illness are gone by the time they come!

March 5, 2012

From a medical standpoint, there is not much to report. SD has been doing great during this phase of treatment. It's often hard to tell just what he is feeling; we know he is sometimes in pain because he will occasionally groan during the night and say "ow", but so far it hasn't kept him awake. He sleeps quite well most of the time. During the day he is usually bright and cheerful...although he does have his moments, like any other two year old.

His personality has really been flourishing, in spite of what he's been going through. Shortly before his diagnosis, he seemed to grow increasingly shy, even around people he knew. We later found out that this is a common occurrence in children leading up to this diagnosis. Lately, his shyness has been disappearing, even though he hasn't been spending much time around people. He seems more at ease during clinic each time we go, and at a recent trip to the library he made a new friend. Even before he got sick, he was somewhat shy, so this is a breakthrough for him.

At his February 23 clinic visit, SD got to meet a lot of new people: some patients, parents, the lady who makes his chemo medicine, and some of the nurses he hadn't seen before. He has started "talking" to most of the staff who talks to him (usually "uh huuuh" is his response to any question, although he will say more to some of them, Mary in particular) and has gained a confidence that is heartening to see.

A snow storm swept through our area over the weekend, knocking out our power at home. Since that meant no heat, we decided to go to Grand Rapids a day earlier than planned for today's appointment. Since we left so early, we brought Emma with us; Stephen stayed with her while Mandy brought SD to his appointment.

SD had his only scheduled spinal tap for this phase of treatment this morning, checking for leukemia cells, as well as receiving IT chemo. The preliminary results came back normal. The boy likes to stay asleep after sedation; it would be nice if we could let him! But Mom came prepared with grapes today, something he asked for nonstop all day yesterday (along with cheese). Last night Stephen went out to buy some, so SD was able to satisfy his craving then, but the first thing he did this morning (and yesterday morning) was pop up in bed and say, "Bray. Eh she." (Which translates to "Grapes. And cheese.") Unfortunately, he was NPO, so he could have nothing, but he is starting to understand that better than he could back in the Dark Days of Steroids. When he woke from sedation today and heard the word grapes, he was so eager for them that he immediately tried getting off the bed all by his loopy self, which was quite amusing to witness.

Speaking of SD's understanding some things better, he has started asking about when he'll see the doctor this week. He has asked several times, sometimes asking about the doctor, other times about getting poked, but he has never asked anxiously. In fact, he has almost seemed to look forward to today's visit. We try to keep the thought of clinic very positive, as do all the staff, so that probably helps.

P.S. If the person(s) who sent us the anonymous Valentine card is reading this, THANK YOU! You really made our day.