The reality is that I just can’t see strait. I can’t focus.

The reality is that I have been sitting here thinking about what to say and nothing is coming out right. I could easily go on and on about the ways I am feeling in this moment… confusion, sadness, nauseous! BUT… I know deep down that sometime soon I will be able to look back on today and know that despite all of the overwhelming pain and heartache we feel, we were able to push through and see our beautiful sunrise. That I have no doubt. So let’s focus there.

We have been fighting this for over 2 years now. And the fight continues… full speed ahead.

Early this morning, I was sitting in the doctor’s office thinking… this must be a form of mental torture. I know that is a strong, strong statement so I hope it doesn’t get taken in the wrong way. But, this is how I’ve been feeling for a long time and the feeling only gets stronger as we get closer to receiving Xavier’s medical results. The anticipation is incredibly tough, but getting the results that is not what you want to hear is difficult too.

3 months ago Xavier received a DLI (Donor Lymphocyte Infusion) from his big brother. Today the results came back and they were not what we want to see. From my lead in I’m guessing that comes as no surprise… (My sorry attempt at humor) Anyway, CML has increased now to .09%. So what do we do next? Well, after deliberation between our doctor and the adult CML specialist, we have decided to give DLI another try. This time, we will be using all of the remaining cells that were frozen when Xavier’s big brother initially donated 3 months back. This dose will be 10 times the initial does given and it will be all the remaining cells and all Xavier will get. The reason being is because they will not pull anything more from Westin. To get the amounts they would need for another dose it would be too risky for a child. I won’t get into details, but I am in agreement that we would not go there.

So, next Friday Xavier will be admitted to Children’s. They will insert a PICC line and he will be given the next and final DLI. Should not be more than a 24 hour stay at most. There are higher risks with this DLI than the first because they are using frozen cells opposed to what he initially got which was fresh. With the frozen there are extra additives. They need to be careful it doesn’t cause a reaction. From here, we will diligently watch for GVHD. Chances are higher being that the dosage has increased tenfold.

One month post second DLI we will test again. Either it will work, or it won’t. The doctor put it that simply. There are no more cells remaining to try again. Very cut and dry.

Part of me understands what’s going on. I mean, I know what the next step is and understand where we are at… but the other half of me is just so lost and confused. It doesn’t make sense.

I just feel so incredibly bless to have my husband by my side. We are in the thick of this together and I am so grateful. The boys and I are very fortunate and it’s something I will never take for granted.

Xavier is feeling great by the way! With all of this going on, he feels amazing! He’s outside playing every moment the sun is out. He learned to ride a 2 wheel bike the other week so he’s always on the go. He’s playing with his awesome big brother, they are loving each other AND at times bickering with one another and I LOVE IT! Ok, mostly…

This Sunday is Brothers Day. It marks 1 year post sibling donor Bone Marrow Transplant. It is a huge milestone in itself for both of my boys and I am insanely proud. We still have hurdles to climb but on Sunday, we celebrate the love, courage, strength, and undeniable resilience of my boys.