Yes. The big news of the day is the arrival of proof of new cell growth.
Gregory has decided to quit using the potty. Which is totally OK and somewhat expected. The benefit to this is that we both receive better sleep. While it is still interrupted, at least we aren’t climbing out of bed to use the potty. I was reluctant to wake up yesterday morning, when I did, I glanced over and sitting on top of my laptop were labs. I grabbed them and was in shock and disbelief.
Counts: ANC ~ 14, Platelets ~ 12, Hematocrit ~ 36.2, Weight ~ 13.9 K
Yep. Gregory has some new cell activity. It’s normal for this activity to wax and wane for a few days. So we may see an ANC for a day and then nothing for a day. Dad, Mom, Curtis and AnnMarie showed up not long before rounds. They got to experience that and get the good news straight from the providers. Gregory is STILL febrile. He spiked in the middle of the night, the night before, a few times Friday and this morning (Saturday) at 6:30. His tests are still coming back negative so yesterday a CT Scan was ordered. Here’s the kicker. My child, who has not been taking anytihng by mouth for several weeks, had to swallow 6 ounces of juice/contrast for the CT. UGH!! While he had a fever. The plan was to give him another antiemetic (Raglan w/Benadryl) after his Tylenol and try and get him to swallow the contrast/juice mix. If this was not successful, we would insert an nG tube and get it in him that way. Orders needed to be written, CT needed to be scheduled……. So AnnMarie and I went downstairs for Coffee.
On our way out of the entrance, we arrived to see a caravan of mortorcycles entering the cul de sac. It’s hard to describe the vision and the way it made me feel. There is something so visceral about the sound of mortorcycles. There must have been about 150 of them. The sound of those bikes combined with the amazing news of Gregory’s cell and I kinda lost it. AnnMarie and I just stood there watching these bikes pour in. They had a police/patrol escort and there was someone there to take a picture of each biker as they arrived. I had no idea what was going on. My first reaction was to think that it was a memorial ride of some kind. I stood there listening and watching, with tears streaming down my face. The thought of all of these folks coming together, community, was awesome. Come to find out that it was The Children’s Ride. They parked their bikes in the cul de sac and had a few hours visit at the hospital. It was really cool.
Upon returning to the room, it was time to get down to business. Gregory tried to sip down his juice/contrast, but it wasn’t working. He had just spiked a fever and taken Tylenol. Which he promptly threw up. He got about an ounce of the contrast/juice on board and couldn’t swallow anymore. It was time to try an nG Tube. It was a horrible experience. I had to hold him still while they tried to instert a two foot tube through his nose and into his stomach. It wasn’t happening. He was really traumatized. He was pre-medicated with the RagBen and it knocks him out cold. After trying to insert the tube, he fell asleep. I roused him and explained to him that if he didn’t drink the juice/contrast, we would need to try to insert the tube, again. In the meantime, we found out that he only needed to swallow three ounces. Big difference. I got a medicine syringe and slowly fed him the three ounces, teaspoon by teaspoon. We had to have this done by 12:30, in order to get the results back the same day. Thankfully it was acheived. His CT was scheduled at 2:30 so we had a few hours to veg. We took the opportunity to nap. There also was the question of whether or not he needed to be sedated for the CT. I was really on the fence. He needed to lie still for about 10 minutes. He was still so tired that I decided to try it without sedation. We got in there and there was an anesthesiologist on hand, just in case. She was awesome. She had a mobile device with movies on it and she played Cars for him during the procedure. He was so good. We left our room at 2:30 and were back at 3:00. It was quick and uneventful. Yay! The results were unremarkable. Currently, he does not have an infection. At least as far as the testing, so far, goes. Which has been pretty extensive. He also has had really great prophylactic coverage. They think he is simply feverish.
After we came back, Gregory fell promply asleep and slept pretty much solid until 6:00 this morning. I managed to get in a hefty nap, too. We are both feeling quite refreshed, today.
No real news, yet, on today’s counts. Saturday’s are a completely different pace. It is now 9:00 and we have yet to round. I do know that he will be receiving Platelets but not Red Cells. The differential is not back, yet.
We a relaxing day, today. Time to spend together, with a little fun. His spirits are really great today. He is starting to feel better and better. Except for these darn fevers. No real signs of GVH, yet. I did find out that they consider him engrafted when his ANC is at 500 and discharge is when the ANC is at 1000 for three days. Along with everything else being stable. Joan, our PA, thinks this might happen by the middle of July. Day by day. Moment to moment. Dr Manley stopped by, yesterday, too. Just to see how he was doing. It was great that he stopped in on his first ANC day. Which I’m sure was not a coincidence. So. Until there is more to report……… ’til later, gotta jet.