I think I've been procrastinating writing this update. Monday was a hard day for me.
But first, last Sunday was Mother's Day. My sweet family surprised me with a hanging basket and a book and cinnamon buns. Later we went to Granny's to celebrate the May family birthdays - Granny, Auntie Jenny and me. Finally, we headed to Boston Pizza for Mother's Day dinner out. Eric enjoyed it so much that he asked if we could go back for his birthday, which isn't until July! Eric also finished his 28 day cycle of oral treatment on Sunday.
So, Monday... it was my birthday and we had to go to clinic, but that was fine. Eric would get his platelets and we'd get home and still have the afternoon and evening. However, Eric's bloodwork came back and he needed blood. His hemoglobin was 78 so the doctor said we could probably wait until his Friday appointment, but he typically will get headaches under 80 and I didn't want either one of us to have to deal with that for a week. I try and manage expectations and had told Eric that this was a possibility, but I guess I forgot to tell myself that. My eyes started leaking as soon as they told me he needed blood. Between my expectations for the day, and the conversation with Eric's doctor last week about how he hasn't needed blood for over a month and maybe that's a good sign, I fell apart. I was chatting with the Child Life Specialist and saying that I've become such an expert at keeping it all together, all damned up, that it only takes the slightest nick for it to all come pouring out. I kept crying on and off the whole time we were at the hospital, and it was a long day. Luckily Eric is still working on the project he is building for the playroom, so that kept him entertained.
When we changed from the short stay side to the infusion side of clinic, we didn't see a nurse for awhile. Oh, and the room we got moved to didn't even have a recliner! Eventually the nurse started the premeds, but then the platelets weren't ready right away, and then blood wasn't ready when the platelets finished. We were there for 7 hours, hit rush hour both ways, and didn't get home until about 5:20pm. A couple of wonderful friends had left a bottle of wine and some bubble bath at my door while we were out, and that was the start to a much better evening. I put the wine in the freezer, ordered sushi and laid down for 10 minutes. The evening was lovely: wine, sushi, gifts and a cake made with so much love, topped off with a bubble bath before bed.
With Eric loaded up on all the blood products and having finished his cycle of treatment, I was hopeful he would go to school during the week. However, on Tuesday, Eric and I both needed a day to recover. We both spent the day in our pajamas, which is normal for Eric, but I got a solid 36 pajama hours in and it was amazing. On Wednesday I had hoped Eric would go to school, but he had a big sleep in and then a bleeding nose and just wasn't feeling it. On Thursday he was a bit more motivated to get to school and was able to spend the whole day. It's the first time he's been to school in a month maybe.
On Friday we were back to clinic for a scheduled bone marrow biopsy, so we had an early appointment. After the platelet disaster surrounding the last biopsy, I had asked the doctor to pre-order the platelets so the transfusion could be done in advance of the biopsy. Eric, as always, just wanted to know how many people were on the list. We were initially told 6, but turns out 2 people dropped off and I think Eric ended up third. His platelets were actually just finishing as we walked into the procedure room. When Eric woke up he had his pb & j sandwich and a chocolate milk, followed by all the rest of the food that I had packed. Eric likes to chill a bit while the anesthesia wears off. About an hour after he woke up, they kicked us out, nicely, but they needed the room. I was pretty happy about it because I didn't have to convince Eric that it was time to go and we ended up home before 2pm.
We are now waiting for the biopsy results, along with the split chimerism results from the previous week. Next appointment is Wednesday and in the meantime, we will enjoy the long weekend!
No comments:
Post a Comment