It is not for a lack of desire to write and keep this blog update…. Goodness knows I don’t hold much back. Certainly I’ve written down my feelings when experiencing the lows and daily dream about the highest of highs. It’s been a rollercoaster.

To tell you the truth, I have been waiting for the “perfect time” to put something out there and in doing so, I have come to the conclusion that until Xavier is completely healthy, there really is no ideal moment.

So… I’m going to take a crack at this. Just a quick synopsis, if you will, of the last 4 months or so and then get to the nitty-gritty of where we are sitting today. And because we received a glimmer of hope not too long ago, it makes it a bit easier to put it all out there…

Per my previous blog posted in June, after Xavier’s first Donor Lymphocyte Infusion (DLI) from his brother, the CML in his body continued to rise to .09%. It wasn’t good news. We knew we had to go ahead and use the last or Westin’s frozen fighter t-cells to try to attack the remaining CML cells in Xavier’s body. Again, this is what they call the graft vs. leukemia effect.

Because the fighter t-cells that remained were frozen, Westin didn’t have to do anything for this DLI. He was off the hook this time 😉 For Xavier, it was quite the process! All in one day he underwent a surgery to have a PICC line placed, received the second donor lymphocyte infusion through that PICC line, 7 hours of fluids, AND the PICC line removal. He did amazing throughout the process but I’m not going to lie… the removal of the PICC line was very, very painful for him. Broke my heart but of course he bounced back quickly because he knew we could go home once it was out. Seattle Cancer Care Alliance (SCCA) had two experienced techs there that had done this many times in the adult world so fortunately they were able to assist the nurses at Children’s as it was something they had never done. I’m not going to lie, that made me nervous because they were working with all of the cells we had left so there was absolutely no room for error. We needed every single cell to be infused. At one point during the infusion I about croaked when some of the precious blood and cells leaked out, it was a tiny bit but I was panicking. But, everything ended up ok… including my blood pressure….

A little less than 6 weeks later we had Xavier’s BCR-ABL tested to tell us if the residual CML had gone down like we had hopped. Anxiously we wait… No phone call so we know we are getting the results at our next appointment.

We were called into our room and unfortunately for the doctor, he made eye contact with us as he was walking to another patient’s room first. He had to stop by and give a “hello”. It would have been weird not to. So he does that and then John said… “It’s not good news it is.” We knew if it was good he’d tell us right away. Of course, our doctor had to tell us the truth “well… no… we are going to have to have a conversation.” Then with that, he had to go to his other appointment. It was a bit awkward but more than that, just a punch in the gut… once again. They just keep coming. Again. And again. And Again.

Once the doctor came back for our actual visit, we got all of the details. Xavier’s CML increased to .17%. That’s a very gradual rise so something is happening inside Xavier’s body. There is fight in there for sure. But the fact of that matter is that it was still rising and at this point the doctors considered it active. If we had an adult donor the next step would be to continue with another DLI. Ten time the last about. But, as we were told earlier, that is not an option for us until Westin is about 12 years old. I’ll tell you… it’s so tough knowing that there is still a possibility out there to save the transplant, to cure our son, but we can’t do it.

At this point the doctor found it the right time to go in and do another bone marrow aspirate to just see exactly where we are at. How much CML in the bone marrow? Are there mutations? Etc. Xavier did the bone marrow aspirate no problem and we decided to make a last minute family vacation while we waited for the results. Yep, that’s how we do. Actually, we had to cancel our family trip earlier in the summer because of the DLI’s and chance of GVHD or anything else that could come up post DLI.

We went on our vacation and had an incredible time!! About 5 days in we got a call from one of our doctors with the aspirate results. No mutations, nothing funny going on (not sure of the terminology of the other things they tested for except there weren’t any), and .04% CML cells. The doctor was very happy with this as we knew we would see some CML cells in the bone marrow and to only see .04% they thought was good. They felt confident that the CML was moving slowly enough that they as doctors could take their time in figuring out the next steps. Honestly, I’m guessing that slow moving to them is a “luxury” that they don’t often get when dealing with leukemia.

So a few weeks pass…. Nothing from the doctors. Then maybe another week or two passes. Nothing. So John calls and the doctor says he is in talks with the adult CML specialist and another doctor at Seattle Children’s to figure out the next steps and they’d call us soon to set up an appointment to go over the plan when it’s finalized. So we waiting some more…. Pretty patiently I might add. A little personal praise is never a bad thing right?! Anyway, we finally get the appointment set. We noticed that there was no BCR-ABL test requested. John and I both agreed that before we start any new TKI therapy or whatever they had planned we wanted to know exactly where the CML was at. We needed a base line before we started. Without pushback, they honored our request and added the test.

This brings us now to about two weeks ago… We went in and Xavier had his blood draw. The typical CBC (complete blood count) and our requested BCR-ABL. The BCR-ABL typically takes about 5 days to get back but the CBC we get back right away. Xavier’s blood counts have looked great for quite some time. But it looked a bit different on this day. Not necessarily in a bad way. While his numbers usually land on the lower side of normal, they really made a jump to smack dab in the middle of each range. So in looking at that John and I knew….. something’s going on here, so what is it? Well, the BCR-ABL is the only test that can tell us. We were certain that we did not want to start therapy until after we got the results back. To be honest, I don’t think that made our doctor too happy. We just really weren’t on the same page this appointment…. Xavier’s case has been such a unique case. Nothing has followed the “norm”. But I have to say even though we are not always on the same page as our doctor, I have so much appreciation for him. It was a tough appointment though…. And it definitely warranted a glass of wine. OK. Maybe two at lunchtime.

The next morning John’s phone rings and I hear “Hello Dr.” John immediately put the phone on speaker so I can hear. It was so unexpected… Why is he calling?

This is where the good news comes in…. Darn right we got some!

The BCR-ABL test came back and… it went from .17% to .04%. That’s right. It went down baby. And by a lot. I’m not going to lie, it was fist bump worthy… and it happened.

So what are we looking at here? Hopefully this is a late response to the DLI. His body must be fighting hard. Wow! Just the day before we had a difficult doctor appointment and it was the doctor’s desire for us to start therapy that day. Fast forward less than 24 hours and we are being told .04% and NOT to start any medication. It felt good!

The only conflicting part about this exciting news that we received is that we know the reality. The reality is that we are still far from being out of the woods. And as much as we want to be over the moon with this information… the fact is that the CML is still there.

So with that being said, we could use all of the positive thinking, prayers, thoughts, anything you have we will take. We really wanted to be cautious with this latest news and thought about not putting it out there…. But I realize that there are a lot of people out there who love Xavier and have his best interest at heart. Thank you. We test again mid-December.

I will end with this…. Xavier has never felt better and never been happier. Ever. He has really come into his own. He is at school and just doing SO well! He’s making friends and L.O.V.E.S. it! He is a complete monkey climbing everything and has quite the sense of humor. And sometimes a little sass… AND I’ll take it all!