Day +80, 5/31/25
It's been a few weeks and a few ups and downs.
Two weeks ago (around day +65), ZiLong's hemoglobin had dropped to 7.4. It had been on a continual decline getting lower and lower. the hospital asked us if we wanted to do a blood transfusion, and his mood had been telling me he was feeling low, so we said yes. They agreed it was the right choice, noting his heart rate and blood pressure were slightly elevated. So...on day +65 he had a blood transfusion.
While absolutely necessary, it was frustrating because we felt it would be a couple of weeks before we would know if his body was making hemoglobin yet, because his blood tests would be artificially elevated by the blood transfusion. The following week his hemoglobin was 9.6 at both his day +69 and day +72. Day +75 came around and we were not surprised to see his hemoglobin drop to 9.3. What we did not expect was to see it pop up to 9.7 on day +78!!! We are cautiously optimistic that this is our first sign that his body is starting to make its own Hemoglobin!
The team gave us the go ahead to skip labs this next Monday and just do labs on Thursday this next week- the first week we get to go down from two lab drops per week to one lab drop per week.
Next Thursday they will start planning for 100 day labs, and more exciting, surgery to remove his broviac catheter and hopefully for discharge! We had initially hoped to get out of here closer to day 90 like some other families have done, but given his VOD in the hospital, the need for ongoing platelet transfusions for awhile after getting out of the hospital, and blood transfusions, they really need to see him stable for a few weeks before we can be released to go back to Portland.
Fortunately his Platelets are doing great (34 on day +78!) and his WBC has been bouncing around between 2.0-3.2, with it hitting 3.2 on day +78. The team does not seem to feel concerned about that, so we are taking our cues from them.
There have been several swaps with Jeremy and I between Portland and Oakland, and lots of other activities to keep us all busy! Violet had her last soccer game of the spring rec season and has enjoyed refereeing a few soccer games now that she has become a certified soccer referee.
She is still getting her feet under her but is getting more confident. For now she is a sideline ref, which means she is on one side of the field and there is another ref on the other side of the field who help out the main referee in the center and help with off sides calls, throw ins, etc. Violet's leadership group participated in an "Schnitzer Cares" night at the Ecotrust building in the Pearl District.
Her Leadership group had spent the year raising funds to donate, and had interviewed a number of nonprofits to determine who their grant would be gifted to. As one of the "co-presidents" of her Leadership group, Violet was able to attend so they could award the funds to their non profit of choice. The event included highschool leadership groups from all around the Portland Metro area, and I think in total, all the groups awarded over $900,000 to non profits and school groups around the state.
Maddie celebrated her 17th birthday by performing at a Choir concert.
It wasn't all work, we drove around looking for birthday freebies, including ice cream, boba tea and a Moberi smoothie bowl!
She also started a new job (in addition to the after school job she has at an after school program for elementary school kids) at Providence Park.
She has done a few soccer games and will also be working concerts that happen at the park as well. Up at our house on Mount Hood, we had two dead trees that needed to come down and a diseased one as well.
We had a bid last fall, but just now had the funds to do it. We have someone clean off the roof a few times a year and he actually reccomended another tree company, and we are so glad he did, as they saved us over $1000, AND took care of all the wood!
The original tree guy was only planning to take 2 trees down and would not even take the wood, for $1000 more! It was quite a sight to see them up high in the tree in the back, then using their giant crane to lift it over the top of the house and bring it over to the road to cut up.
Meanwhile down in Oakland, ZiLong had a surprise visitor a week and a half ago when one of our favorite residents from Palliative care, Sam, came to visit after he finished at the hospital to play a little soccer in the back yard.
Otherwise we have spent the weeks with ZiLong doing school, finding activities to keep us busy in the evenings.
We discovered a marina and had a nice walk along the water.
There have been lots of airport trips...to the airport, back home from the airport, lots of "welcome backs" and lots of goodbyes. We will all be ready to be in the same place in the coming month so we can stop these constant goodbyes.
