Just a few weeks ago we got the call from Xavier’s doctor telling us that Xavier’s leukemia had increased from .02% to .04%.
No appointments, no deliberation of options or explanation of our next step necessary… We knew what this increase meant. We were going to DLI (Donor Lymphocyte Infusion).
The whole process moved along quite swiftly. The actual procedure was approved by insurance much quicker than anticipated and as soon as they got that approval, the coordination began. The process was different than we thought it would be. And frankly, the doctors didn’t even know for sure how things were going to run.
The reality is that when you are dealing with a match sibling donor everything is just a little more complicated (not complaining here!). Just as with the transplant, donor and recipient legally must be represented by different doctors. A lot of behind the scene coordination for the doctors, and for the family at that. PLUS, on top of the obvious complexity of dealing with 2 separate patients in one family, they rarely do this procedure in pediatrics. The protocol for the DLI was written for the adult world, not pediatric.
Everything started late last week for Xavier. Blood draw, physical/questions/more questions, and another blood draw cause hey, why not? No, actually they just forgot to test something. Oh well.
Over the weekend, we had a talk with Xavier’s big brother, Westin. We sat down and the three of us told him everything. What, why, how… After our discussion, we asked Westin how he was feeling and he simply said, “I want to help Xavier.” What an incredibly selfless and loving little boy. It’s kind of crazy because I have so much passion when I am writing this about Westin, words just don’t do my boy justice. He is truly amazing, truly a blessing.
Monday morning was big brother’s turn. A full day of testing similar to Xavier’s the week before. It made for a long day, but he did great. No surprise. In between all of Westin’s appointments at SCCA and a appointment later with Xavier’s doctor to sign paperwork at Children’s Hospital, the boys got a special surprise from one of their very favorite friends who is very near and dear to their heart! Nothing better than a good visit from someone that is so special to them!
Wednesday started with a last minute blood draw for Xavier in the morning and an afternoon of paperwork signing and review of Westin’s part of the procedure with his doctor. All of his blood work came back beautiful! His iron was super low but apparently that is quite common and not worrisome in the least to them. They just want him to take a high dose iron supplement to get a boost after his large blood donation. Westin’s hematocrit was 35 and the doctors thought after the blood draw, it would fall at least to 25. Not a dangerous number at all, but it takes a while to recover.
Throughout the processes, everything was done at SCCA except for Westin’s cell collection because SCCA is not very well trained in collecting from children and there had been issues in the past. We were very happy and comfortable going to Children’s because it was so important to have the cells come out perfectly so they are not damaged.
Thursday morning was the big day. Westin’s part started at 8am. It was a little odd when we first arrived at the clinic because they had us in as Westin having a platelet transfusion. It didn’t worry us because we obviously knew that was not the case. Come to find out they just didn’t know what else to put it under because it was just such a unique situation.
Westin was very brave and they got the IV started no problem. Then of course Xavier proceeded to ask when it was going to be his turn. Sorry buddy, I’m glad you’re ready but just one at a time… haha.
Someone from SCCA was there to actually do the collection and then transfer the cells to SCCA. They had to do some blood testing before they could proceed with the collection so there was a lot of waiting. Then they had to write some new orders and take more blood because his middle name was misspelled on the first draw… Anyway, we finally got the green light and the woman from SCCA started the blood draw.
Westin was completely distracted playing a game on my phone, but then just two syringes in he looked at what was actually going on and, well, it was downhill from there. He went completely white and limp. His blood pressure went super low and the nurses were very concerned. The women from SCCA was not going to continue without consent from doctors. I was so scared for Westin, and at the same time so scared that we would not be able to collect the cells Xavier needed.
Looking back I am not that surprised Westin had this faint reaction. The blood was being drawn from the IV into a syringe then pushed back into a tube and into a big bag of blood all basically on his lap. They finally got approval to proceed after Westin’s blood pressure went up a bit and he became a bit more responsive. We took it extremely slow, taking his blood pressure after every syringe and taking breaks when his blood pressure dropped. Somehow we were finally able to make it through. The transplant doctors that were currently inpatient came down to check on him and he was given the “OK” to go. It didn’t come without a scare, but we got what we needed!
After Westin had a giant chocolate cupcake and some lunch he was nothing less than perfect. And then mom and dad had a glass of wine at lunch so we were better too of course.
Then we were off to SCCA for the infusion. The cells were all ready to go. We were told that it would be about a 2-3 hour infusion but when we got into the room the nurse showed us a syringe with the cells and said it would go over a period of about 5 minutes. We were a little taken back at first because it just didn’t seem right… However, everything ended up checking out as it should. So, Xavier got his IV and 5 minute infusion. They watched him for about 30min after and then we were on our way.
As it turns out we were able to freeze 8 more DLI’s if we need them in the future. Westin was just super rich in cells and they were really able to get what we needed.
The doctors took a look at Westin today and he checked out great. They will see Xavier for blood draws and physical exams every week for the first month post DLI. They are looking for graft vs. host disease. (GVHD). In 2-3 months they will do the BCR-ABL test to see what is going on with the residual leukemia and also see if Xavier has reached 100% Westin’s cells. Today he sits at 97%.
April marks 2 YEARS since Xavier was diagnosed with CML.
We are strong AND we are frustrated.
Our boys are our strength and Xavier is a fighter.
The way I see it, we are just took one step closer to a cure.
