Three years ago this April Xavier was diagnosed with Chronic Myelogenous Leukemia (CML) and started oral chemotherapy to get his leukemia down as low as possible.

One and half years ago Xavier underwent an Allogeneic Bone Marrow Transplant completely whipping out all of his own cells from his little body and infusing healthy cells taken from his big brother Westin’s bone marrow… with hopes of a cure.

8 months ago Xavier received his first donor lymphocyte infusion (DLI) with a large collection of his big brother Westin’s fighter t-cells… with hopes to salvage Xavier’s transplant.

5 months ago Xavier received his second donor lymphocyte infusion (DLI) with the remaining frozen t-cells collected from his big brother Westin before the first DLI… with hopes to again, salvage Xavier’s transplant.

Today I can tell you that the CML in Xavier’s body is still present.

Just before Christmas we received the latest results of .05% CML cells in Xavier’s peripheral blood.  The new number is up from the .04% we saw two months prior. Very disappointing to see the downward trend pop slightly back up… I have to say, however, that there is no need to delve into my feelings over the latest test results. This is the new number. We get tested again mid-February to see where the trend is taking us.

We could sit here all day and speculate… if the next test shows this result than it will be “A” scenario. If the test show this result than “B” scenario and so on. To be brutally honest, I don’t even know if we are going to agree with what the doctor wants us to do next.

Like I have said time and time again, nothing about Xavier’s case has been by “the book”. The book tells us to go back on therapy (TKI) which is what we had agreed to do before there was a big “surprise” drop from .17% to .04%. But the thing is now… I just don’t understand why you would put a young, growing child back on a therapy that has a low chance of taking the CML down lower than it currently sits. Even the doctor agreed that the longer Xavier is off the TKI, the better. So why are we in a hurry to put him back on? But I guess that is just another conversation with our doctor.

Not to further exhaust the point but nothing has gone how we thought it would ever since transplant. If we think one thing then it’s the other and if we are bracing ourselves to move in one direction, we start talking about another. It’s a vicious cycle and none of this adds up.

So please excuse me for coming off a little brash, but in terms of Xavier’s CML, I really have nothing much more to say. I’m officially tapped. Totally whipped out. Right now, our every day is not CML. Is it always on our mind? Yes. Does it scare the shit out of me? Hell yes! I would worry if it didn’t.

But you know what…Today when I woke up I got to take my beautiful boys to school. Just this last weekend I got to see Xavier start his first t-ball clinic. He’s a total bad ass!

I’ve seen Xavier enjoy play dates with his friends and anxiously watched him go sledding by me fearlessly on a steep snow-covered mountain.

Every smile, every giggle, every hug. It is everything to me. Xavier has John’s big grin. What brings our boys joy brings us the world. Instead of speculating what the results of the next blood test could be and may mean for us going forward, we are going to enjoy our boys living a life free of exclusion, worry or burden.

So damn right I’m scared. But, we are living life and living off of all of the blessings we have around us in this moment. That is what has and will continue to give us our second wind. While wait for Xavier’s CML to show undetectable, we will continue to move forward and live our lives and treasure each other and every one of our blessings.

In terms of my blaring outward honesty, I have become vulnerable in a way I never imagined. The very first thing I ever said when I started this blog was that “I never thought I would be someone who felt comfortable putting my family life out there for people to read about”. I meant that.

As a little girl I never kept a journal. I never wrote down my thought or feelings like I have here. Part of me can’t believe I was so honest about our journey, but another part of me thinks I don’t know how I would have survived without it. I am thankful that I let myself become emotionally vulnerable and I know that it is not a sign of weakness, but a sign a strength.

My true intention was never solely just to use this as a way of updating people throughout Xavier’s bone marrow transplant. I felt like if I could just reach at least one person and make them feel like maybe someone else understood them or could relate to them; whether dealing with leukemia or any other personal or family hardships, this would be a success. It can be a little lonely when you feel like no one can relate to you.

I never intended to still be writing. Not about this anyway. Xavier’s leukemia was supposed to be gone. That was the plan. For a little while now I have found myself becoming so redundant and it’s getting to me. When I first started writing about our past and the long journey we had ahead of us, it was more specifically aimed at the bone marrow transplant. But now, everything about the transplant is written in past tense. It’s done.

Xavier is a Bone Marrow Transplant SURVIVOR.

We can’t lose sight of this. Yes, the leukemia is still present in his body at low amounts, but Xavier went through his transplant and totally kicked its butt. He is almost 100% Westin’s cells. Nothing from Westin’s bone marrow was ever rejected. Xavier survived a long, highly risky and intensive procedure. Nothing about it was easy. So for that, he is a survivor!

I don’t think anyone will ever be able to tell you for certain why the CML is still in his body and trying to be active. I use the word “trying” because there is still something in Xavier’s body that is feverishly trying to fight this nasty leukemia. It is clearly apparent with how slowly the numbers move. The doctors agree. Westin’s fighter t-cells in Xavier’s body are strong! If Westin’s little body could safely handle another blood/t-cell retrieval donation for DLI, we would do it.

Westin donating his bone marrow to Xavier brings so much more to the word brothers. I can’t stop but acknowledge all of the incredible sacrifices Westin has willingly made for his little brother. And Westin was not only called upon once. No. Not only did Westin undergo surgery for bone marrow retrieval, but he went back months later to donate as much blood as they could safely take from his small body. And around both of those procedures he endured countless blood draws, tests and physicals. And I know that Westin would do it again in a split second with no hesitation.

And even beyond all of this, the heart of Westin is something SO special and incredibly unique. The level of kindness, maturity and compassion for others is way beyond his seven years.

I am feeling overwhelmed. I am tearing up. Not because I am sad, mad or scared for what the future holds. I am proud. So proud of all three of my strong boys. And while at times of hardship it’s more difficult to realize. I am one lucky girl. One grateful wife. And one insanely blessed mother.

There have been so many ups and downs. I look back and read some of the days when I felt completely helpless, wondering how I could ever get though the day. There was a very, very long time when I could not even look someone in the eye. I could hear them, but I didn’t even know what they were saying. That fog. The fog was so thick for so long. It’s real.

I’ve never counted but I would estimate Xavier has had over 20 bone marrow aspiration procedures, about one hundred peripheral blood draws, countless IV’s placed, two spinal taps, two surgeries for his central line that connected to his heart and main artery, one PICC line surgery, one endoscopy procedure, admitted to the hospital 5 times for a total of 50 days, a handful of trips to the ER, a few ambulance transports, traveled to different hospitals, and seen numerous different doctors. Oh and a Bone Marrow Transplant! Throwback Video I mean I’m not keeping score here but I think the only thing I ever did before the age of 5 was get a few stitches in my chin… and I thought that was the end of the world!

While Xavier is young, and all of this happened before the age of 5 years old, I hope his painful memories can be replaced with good ones in the future. I hope that one day down the road Xavier can look back and feel a sense of pride in himself. A sense of strength that he conquered something that is beyond what should ever be asked of a small child. Or any human being.

It might sound as though I am in some way trying to compartmentalize the past 5 years like it’s all over and we are now in the clear. I know we are not there yet. But we will get there.

I also know we are not the only ones battling. Not one battle is the same, leukemia or otherwise. I continue to pray for Xavier and all of the beautiful, strong, determined children fighting feverishly every single day. If you ever need inspiration, just look at a child fighting cancer or any other disease. Life threatening or life altering.

What a powerful impact a child can make on your life. We have seen first-hand a toughness I never knew existed and both John and I have been truly inspired.

We are not the same people we were before Xavier’s leukemia diagnosis. I don’t know if any parent could be. But we have grown, we have changed, and we have evolved. And though a challenge at times, we have done this together.

I think at this time it is the right thing to take a break from this blog. A break… it is not the end. As soon as we get good news, I intend to shout it from the roof top!

I must once again refer to the analogy from which this blog has been based… Crashing Waves – Beautiful Sunrise

Right now we are in the wave impact zone of the crashing waves and we continuously and tirelessly keep getting hit by them every time we try to stand up. The water just keeps toppling over us. We are able to catch our breath, for a moment, before we are slammed back down again… and again. But as dramatic as that sounds, I know this set of waves will calm, we will get up, and we will be ok because we stayed together, stayed focused and remained strong.

Once we get out of the water, we may have some sand in out shorts… 😉

But seriously, what I am trying to say is that none of this has been easy. We did make it through the original crashing waves, and this last set has lasted longer than forecasted. We will get our “Beautiful Sunrise”. That never changes. We continue to be focused and determined.

Xavier Style.

We have our eyes on the horizon.