11-9-16

Well we are two days into the chemo, and one infusion down for this first round! The chemo has been pretty easy. He's gotten sick a couple times, but was acting totally fine most of yesterday. Drew's friend Andrew I've mentioned before and his mom came to visit. And Drew loved it. He rode his tricycle, played with cars, showed him around the play room, it was lovely to see him thoroughly enjoy his friend and being so full of energy!

They started the infusion of antibodies about 3:30. He did so well for the first 4 hours--we were very encouraged and excited. Then, within minutes he went from dancing on his bed, to beside himself in pain. It hit him like a brick wall and it was so hard to see. They told us it's a kind of pain that most have never felt--nerve pain all over your body. He started off saying he was hot and then just turned into crying and moaning. It reminded me of a laboring mother. But we made adjustments, decreased the rate of infusion, increased his pain meds, added some...and we got him to managed again. He was able to rest fairly well the rest of tonight. This first infusion was done about 11AM. He's on his break now from that, and is getting his chemo. We had a little scare of a bad reaction, but it seems to have been just that, a scare. His vital signs and stats all look great, so we'll keep going, and hope for smoother sailing. They'll start up the next infusion later this afternoon, the 2nd of four. Josh is now bac from his trip, and will switch out with me this afternoon. Molly will come back from Iowa and we'll hopefully be all together at home by the end of the day Saturday. Please keep Drew in your prayers--for comfort during these infusions, for relief when it's all over, and for these antibodies/chemo to get to work and destroy this cancer!

I am told from nurses and the doctors, along with moms who have gone through this with their little ones, that the first infusion is the worst before we figure out the right combination of rate and pain meds that work for him. And also that subsequent infusions generally get easier. I hope they are right. I talked with the doctor again about the big picture--why are we putting him through this again?? She reiterated that we wouldn't be if we didn't have reason to believe that this has a chance at helping him. At shrinking this mass, keeping the cancer at bay.

Last night was so tough as I worked to comfort Drew, to settle him down while he was obviously in tremendous pain. Why, why does this little boy have to suffer so? But today, as I walk through the ICU and chatted with nurses that have seen so much, I'm reminded what we are fighting for. The chance to keep enjoying Drew. He's still here, we still have so much to experience and enjoy with him. So many here would love to be able to talk to their child, give them a bath, even see their eyes! And we get that chance, even as we face an uncertain future. As long as we can keep him comfortable, we should take that chance. Even more incentive to live life to the fullest each day and be grateful for all we have, our motto since we started this journey in January.

Another interesting note--Drew continues to flourish in his growth and development. He's now in the 97th percentile for height and weight for his age group (38 lbs and about 100 cm tall). He still requires no physical therapy and can keep up with kids his own age, what a blessing. Everyone continues to be amazed by his strength, attitude, and charm. He's certainly not going into this fight limping! We are charging in, and if anyone can beat this beast, it's our Drewy!

~Heidi