On many occasions over the last, what… 4 months, I have thought about giving updates on Xavier. But I haven’t. After everything that we have been through over the last 2 years all I desperately want to do is shout from the highest mountain top that Xavier, our family, is in the clear. The deep fog has lifted and we can see everything so clearly now. But I can’t do that.

The residual CML is still there… in the tiniest way. Slowly increasing… yes, in the tiniest way. When you are talking about leukemia, even that is only detected in the deepest molecular tests… it’s a problem. We went to transplant for a chance to cure Xavier. That we will do. We may just have to do a little more to help that process along. We have a solid plan in place and we know what we need to do.

For quite some time now we have been doing BCR-ABL tests consistently to track the pattern of the leukemia. It has now gone from >.01% to .02% over the last few months. It is just not going in the right direction. So yesterday when we got the result of .02% we decided that it’s getting to that point where we need to do something to intervene and help the process of destroying the residual CML. Before our appointment yesterday, our doctor reached out to the adult CML specialist at Seattle Cancer Care Alliance and confirmed our doctor’s thoughts.

Plan: Wait 1 month and re-take the BCR-ABL (leukemia) AND chemistry tests (what percent of the cells are donor cells). At that time the results with show that the leukemia either went down, up, or stayed the same. Stating the obvious, right? Well, it’s true. That’s how we’ve been dealing with getting results back as of late. It never gets easier. Especially when they are not what you want to hear.

Something that is important to mention is that there is still a chance the leukemia could go down. There is that chance and we pray for it every day. For us, because of what we see in the recent trends, we have to prepare ourselves for everything.

So, numbers goes down and we do not intervene. Stays the same, and we look at the chemistry and make a decision. If it sticks with the current trend and goes up, we will proceed to Donor Lymphocyte Infusion (DLI). The last thing we want to do is intervene when it is not necessary. But at this point, our doctors and those they have conferred with agree, this would be the time to step in.

I’ll be honest, I’m still learning about the ins and outs of DLI, but here is an abbreviated version of what I know…

DLI is an infusion of lymphocytes (a subtype of white blood cells of the immune system) from the original bone marrow donor. In our case, Xavier’s big brother W. Those white blood cells will then recognize and destroy the leukemia cells. This can only be done after transplant and has shown to have very, very good results in CML patients. It’s funny because I told the doctor that I wish so much that he could just tell me it will work. He probably thinks I’m a little crazy but I am almost certain that I am not the only parent that has ever said that to their doctor…

The way I see it, the process of DLI is a watered down, I mean drenched version of the transplant itself. A doctor may say that I am completely out of line for saying that, but maybe not.

It breaks my heart, but once again we need Xavier’s big brother for this. He will have to go through the same blood work and physical work-up he did before donating for bone marrow transplant. They will check everything. Then, once all of that is complete and the results are back we will all be at the hospital. Westin will donate his blood, as much as they can based on body weight and then he will be done. The doctor was asking how much Westin weighs because that makes a big difference with the amount of blood they can take. I had to let him know what he is only a couple of pounds heavier then Xavier who is 2 years younger. The doctor thinks we’ll be fine but hopes we will have enough to freeze also.

Xavier will be admitted and have a PICC Line inserted. This will only be temporary and removed at the time of discharge from the hospital. What it sounds like is that Xavier would get the cells a few hours after they are taken from Westin so they are still fresh. The infusion will be over a few hour period and then I’m guessing that Xavier would just stay for observation… I’m not sure. Unlike transplant, Xavier should be able to go home and we can monitor him there. There are risks, real risks. That is exactly why we were trying to avoid this process. GVHD is a big one… but we don’t even need to go there right now. We are confident with our decision to do this if our results say we should next month and that is where we are at. I believe it takes at least 6 weeks (I could be off on that) to see if the DLI has worked. Some people do a DLI and only need one infusion. Others need multiple.

I know it may seem like I am jumping ahead of myself, but again, it’s time to get real about this strong possibility while still maintaining hope it may not come to this.

I can see how it would be easy to question how Xavier is doing after reading the above. But, the truth is that aside from all of this… he is feeling AMAZING! He is so happy and feeling so good! He is a blast! He had a fever about a month ago and fought it off himself. What a great milestone. Sure sign that his immune system is getting stronger and stronger.

Literally, I have fun with Xavier every day and he has us all laughing… all the time. He is bored with me… and I always say, I know buddy… I absolutely get it and don’t hold it against him. He really does have fun with everything he does, no matter how big or small. One of his favorite things is going through the car wash. When we get gas, we grab a snack and then get the deluxe car wash. The boys call it going to a movie… so their asking to go to the movies all the time. oh boy. It makes me laugh as I write this because I could absolutely see Xavier as a teenager, asking a girl out for dinner and a movie, then getting her a snack from the gas station and taking he through the car wash. love it!

He is beyond ready to be in school and making friends and doing just everything he has not yet been able to do. I’ve applied for his school next year and I am so excited for him. In his application I mentioned that while education is important, I am SO excited to see him develop socially with his peers. We always talk about what it will be like. We pick his brother up from school and Xavier is always asking questions about what happened that day. He always has the best questions that I would never think to ask. We always say that Westin is more like me and Xavier is more like John… that could be trouble. hahaha

The other day we were at University Village which is right next to Children’s Hospital where we have spent so many days and nights. We decided to grab a bite to eat. I suggested a little pizza place. When we walked in I noticed that John seemed a little quiet. I asked him what was up and he reminded me that this was one of the restaurant he would grab dinner for us while we were in for Xavier’s transplant. When we had the opportunity, John would pick up some dinner and I would stay with Xavier. I really wasn’t even thinking about it. I said we could find another place, but he said he was ok. By the end of our dinner I noticed that John once again was a little distracted. He then flag down a waitress who was waiting on another section. John give her his card and said he’d like to pick up the tab of the table of 8 over there on the other side of the room. The waitress was super sweet and asked if she could tell them who was making the kind gesture. John said no thank you. After the waitress left I asked John why he was picking up the tab of people he did not know. John said that he had noticed the Mom wearing a neck badge from Children’s. They were celebrating a birthday, possibly the sibling, and it just felt right. That while we don’t know their situation, they have a child in the hospital and are going through something that is not easy. No matter what it is. He said that he remembers going into the restaurant to pick up our to-go orders and wishing that someone would do something nice for him. A random selfless act in a time of feeling so numb.

I questioned it at first. I know there is a fine line between doing a selfless act of kindness and making someone feel uncomfortable. This was done tastefully. And from the corner or my eye I could see tears in the Mom’s eyes and a gentleman at the table happily just said thank you and looked around the room. I left there not questioning John’s impulsive actions, but being completely inspired by them.

As downright difficult as we have had it, I am aware of our many blessings and I hope never to take that for granted.