Yesterday he and I had a full day of appointments in Rochester. The most stressful being an ENT ear cleaning, followed by a hearing evaluation. The cleaning removed a just-smaller-than-pea-sized ball of wax from the ear that's been in question since the summer. It was hard to ask any more of a kid that's put up with so much, but in the end, I am glad he's got them cleaned out. The hearing evaluation then could be successfully preformed (finally), and it showed that he does have the hearing damage we were warned could result for the strong chemo he's received. The hearing loss currently is just in the high pitches, outside of common vocal range. They couldn't determine the exact threshold since, it turns out, it's pretty hard to get a clear test from a two year old! So the next step would be to do an electrode/probe test the next time he's under to track his brainwaves in response to sound and find the threshold he can't hear above. Then they could get a prescription for hearing aids. At this time, we are going to kind of put this on the back burner since it isn't effecting his daily life. We will wait to see how these first two rounds of the trial go and move forward with addressing his hearing issues as our big picture gets a little more clear.
Then we had a follow up with Oncology after this first round of treatment. They were happy to see how good he looked, which is always encouraging. Especially when I was feeling a bit down because I could tell the chemo was keeping him from being 100% Drew. I guess I keep forgetting what he could look like, and need to appreciate how well he has done through all of the treatment. I asked more questions about the trial we are doing, and I'm glad I did. While everything they told us two weeks ago is true, I seem to feel better knowing this trial really may help, even if long term there still are no guarantees. 53% of kids in the "progressive disease" category like Drew saw benefit from this mix of chemo and antibody therapy. Either the tumors/disease remained the same, or shrunk after two rounds. Which gives us hope that we can still do something about this! Now since this is still a trial, there hasn't been enough time post-treatment for the kids that have seen good responses to prove that this can work in the long run. Which is why they still say, "probably" he won't be a long term survivor, since as of now, very few are. But to even see these statistics and know there was also one in the study so far to have a "complete response" gives me scientific hope, in addition to my spiritual hope. Right now I don't care if they can't say that that one patient will remain cancer free forever, it is wonderful to hear that there even has been one that is in Drew's boat that has reached that point! Please keep praying Drew can join that patient, and be one that IS a long term survivor!!
Short term though, pray we can enjoy these next 11 days before we begin round two. We have plans with both sides of the family around Thanksgiving. Pray Drew and the rest of us stay strong and healthy so everyone can truly enjoy the time together.
Also continue to pray for peace. We don't know what the future holds, and I'm finding it harder some days to keep going. Yesterday going to Rochester by myself for those appointments was hard. I think the last 11 months, and our uncertain future, are starting to catch up to me. And when I'm tired from being up at night caring for sick Drew, I am not strong enough to hold it back. And maybe I shouldn't. I think this whole time we've muscled our way through, kept our eye on the prize and pushed away discouragement. Which overall, I think we plan on continuing to do. But I guess I've decided, with coaching from some great family and friends, that I don't have to have it all together every day. I can have a day here and there where I am just plain sick and tired of cancer. Upset by how unfair this all is. Heartbroken that the sweetest little boy has to go through so much suffering. On those days, I've learned to turn to the only One who can give me the strength to keep fighting. I can't do this by myself. I've said it before, I am just as weak as the next Mom, and need Him to help me put one foot in front of the other as continue on this journey. Please keep praying I do that, and that God can not only continue to give me strength, but also bless me with that perfect peace that has been so comforting to my heart.
~Heidi
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