What a busy week! Since we are taking an extra long weekend, we had to move Eric's Friday clinic visit to Thursday. So we were in Monday and Thursday, plus had to pack, and Eric actually went to school on Tuesday and Wednesday! He had a great time, but holy was he tired!
Monday our clinic visit wasn't until 10am, so we left at 9am and thought traffic would be good, but nope! The visit was overall quite uneventful, since platelet transfusions have been the norm for some time now. However, we did try something new and a little scary. Eric is allergic to platelets, so he usually has an oral dose of Cetirizine (Reactine) and a whopping IV dose of hydrocortisone before he gets platelet transfusions. They also used to give him special platelets that were referred to as "washed" but changed to a different method called psoralen treated. At first those had to be specially requested, but now it is standard. So one of the doctors suggested that we try giving Eric Reactine at home before we leave the house and skip the pre-meds at the hospital. The idea was that with the Reactine on board for longer and with the special psoralen treated platelets, he was unlikely to have a reaction and we could shorten our visits. It worked! (Of course, our visit wasn't any shorter.)
On Monday, Eric's oncologist had partial results from the biopsy. Apparently the long weekend really threw a wrench in things. The report indicates leukemia blasts are <5% That's the reported amount but practically are in the 1-2% range, which is the same as before. It also indicates that the dysplastic (bad) cells are 69% I'm not sure there's any world in which having 70% broken cells is a good thing, except maybe when that is down 20% from the last biopsy. His doctor said we can be cautiously optimistic that this is improvement, but he'd like to see this decrease paired with an increase in donor DNA, but he was still waiting on those results.
As I said, Eric went to school on Tuesday and Wednesday. Wednesday it was almost 30 degrees and after school Eric went to a friend's house after school to play on the slip n'slide. As I was putting sunscreen on his bruised legs I thought (out loud) hmm maybe this isn't such a good idea, but Eric said "too bad, you already said yes!" So that was that. He had so much fun and when I said did you get any new bruises he said "yep" and then continued on whatever he was doing before I asked. But really, who could tell if he had new bruises; he is one big bruise!
Thursday back to clinic, and what a trip it was. We ran into construction, ambulances and police; it was just one thing after another. As we were exiting the highway, I called our Nurse Clinician to let her know we were running quite late, more than 20 minutes. I figured by the time we parked and got into the clinic, we'd be a half hour late. She said she'd let the clinic know and also get the Nurse Practitioner to pre-order the platelets. This turned out to be the best thing ever. Between the platelets being ordered and no pre-meds (we gave Reactine at home again) the platelets were started right after his blood was drawn. It was going to be the fastest clinic visit we've had in 6 months! Was going to be... Eric's team walked into the room and I said this is amazing, we're going to be late more often, and they said, his hemoglobin is 75 and we've ordered blood. Sigh.
They did now have the rest of the biopsy results and they're "interesting." Eric's donor DNA is 12% The doctor was looking for that to come up to about 30% in order to match the drop in dysplastic cells. Obviously, that didn't happen. The doctor drew me a picture to explain what he thinks might be happening. It's a bit complex, and somewhat rare, but essentially he thinks that missing 20% (69%+12% = 81%) might be Eric's own cells, but healthy. It's hard to say if that is good or bad. It would certainly be better if it was donor cells, but it is positive that it is not dysplastic cells. The concern with both donor cells and Eric's cells is that they may not live in harmony, causing GVHD (graft versus host disease). Oh and there is no way to test to see if those are in fact healthy Eric cells. Basically we just wait and see what happens next.
In the meantime, Eric will start another round of the same treatment on Monday. We will drive into the clinic 5 days in a row for the IV treatment and at the same time he will start the 28 day oral treatment.
It's Thursday at about 2:30 pm and the blood is just finishing up. This is how Eric walks around the hospital; notice the ipad perfectly balanced on the IV pole.
I usually bring a book to read but I finished my book yesterday and thought maybe I'd write this up today instead of starting a new book, since we are away for the weekend and I wasn't planning on bringing my laptop. Getting blood today was an unexpected delay, but it also means Eric will be feeling his best for our trip. We've spent the day asking everyone who comes in our room what their favourite road trip song is and adding it to our playlist. We are looking forward to some fun family time and s'mores! We have 2 nights in a hotel and 2 nights in a rustic cabin. Wish us luck for the drive home and the drive out of town!
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