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.

 

 

 

 

 

 

 

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!

 

 

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.

 

 

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.

 

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.

 

It has been said that the first 100 days post-transplant is the most critical for a bone marrow transplant patient. Therefore, this is typically (not always) when most patients are admitted back into the hospital for one reason or another. For Xavier, we were very fortunate not to have any bumps that were too big and we were not re-admitted in that time period. Well, we all know Xavier never does anything in the “typical” fashion. Ever since the +100 day post-transplant mark and since we had his central line removed, we’ve been dealing with some unexpected post-transplant issues.

About two weeks after being admitted to Children’s Hospital for the first time post-transplant due to Xavier’s high fevers, we found ourselves back once again. Another ambulance transfer from Seattle Cancer Care Alliance to Children’s. This time, my tough little guy was dealing with high fevers and an extremely stiff neck. Being that these two symptoms were showing themselves together, the doctors were concerned about the possibility of meningitis.

I’ve really got to start from the beginning. For the sake of getting caught up in the emotion of what we have been going through as of late (mainly frustrations), I’ll keep this as to-the-point as possible. But really, who am I kidding here….

So Xavier started experiencing neck stiffness. So much so he was in tears multiple times and literally could not move his neck. In my option, I don’t think it was pain, I think he was in extreme discomfort and scared to be feeling something he had never felt before. He’s 3 for goodness sake! Over the next couple of days he experienced some low-grade fevers that accompanied his stiff neck. We were told that their concern would be meningitis but to just keep an eye on it. Xavier’s stiff neck and fevers went away for a couple of days but then both came back with a vengeance. We called the hospital (it was after hours) and no one called us back right away so we actually decided just to go to the hospital thinking we would definitely be admitted. We made it all the way down to the hospital (3AM) and when the doctor called back she told us to just go to the SCCA clinic in the morning. The doctor also gave us the one time OK to give Xavier Ibuprofen to help with the neck. This kept his fever down and neck comfortable through the night and into the morning.

We arrived at SCCA where they started an IV and put Xavier on fluids. After some consultations with other doctors, they decided that it was best to be transferred to Children’s ER immediately to have a Spinal Tap (LP) done in order to rule out meningitis. From there, we would be admitted for further observation and testing.

From what we had been told, a spinal tap is the only way to diagnose meningitis. While we hate the idea of putting Xavier through more procedures, we were absolutely on board because IF it was meningitis, we needed to know.

When we got to the ER they looked at Xavier and decided to do a neck X-Ray first. That came up clear. We were waiting for a long time before the ER doctor came in and let us know that she had just come off a long conference call with the transplant team at the hospital and the doctors at SCCA. She let us know that because Xavier does still have leukemia in his blood, there is a risk that in doing a spinal tap, it could transfer one of those leukemia cells into the spinal fluid. We did NOT know this. In addition, she talked about meningitis and how there are two forms… Viral – which is less severe and goes away on its own. Bacterial – which is extremely dangerous and needs immediate treatment. It was believed that IF Xavier did have it, it was definitely the viral form which is something that no antibiotic could help, only time. After hearing all of this information we presumed she was going to say we were not yet going to move forward with the spinal tap. Instead, she let us know that his doctors came to the decision that the risks were greater if Xavier did not do the procedure…

In light of this new information just laid out in front of us, we no longer felt comfortable moving forward with the spinal tap and asked to please speak to someone from the team. A little while later we were told that the procedure had been canceled and we were admitted and sent to our room.

Shortly after we arrived in our room, the night-time attending doctor came in. We were a bit disappointed the team did not make a point to see us before leaving for the evening, but we were happy to finally talk to someone who should have some knowledge of Xavier and could shed some light on our current situation. We felt so alone. Truly, so alone and confused. And then this happened…

This doctor told us something that had never even crossed our minds. He said point blank that what they believe this to be is leukemia of the spinal fluid. That the CML had crossed the barrier. He said that he would be surprised if this was not the case. Could be meningitis, but most likely not. He sees this with a lot of his acute leukemia patients. We were stunned, heart broken and so confused how a fever and stiff neck could suddenly turn into leukemia in the spinal fluid. We could not have been more devastatingly blindsided. When we questioned it and asked how this could be… I mean we are just trying to get rid of the remaining leukemia; this was the plan we were on. He said, “Well, you mean get it under control.” WHAT!?! What was he talking about? Last we check Xavier only had .03% leukemia cells in his blood. At one point we felt like maybe he was looking at another patients file. Especially when he started throwing out the number 14%. He was saying Xavier had 14% leukemia cells in the blood. That was NEVER even a number that Xavier ever was at. WHAT was going on…? He kept referring to his acute leukemia patients. No, Xavier has a very rare, unique and chronic adult leukemia. Then we got to the point of talking about what it means to have leukemia in the spine but John stopped him and stepped outside with the doctor to get more information as Xavier’s big brother was in the room and is very perceptive. Before they stepped out, we said that we would not move any further until we talked to the doctor that created the plan for Xavier to get rid of his leukemia. Really, the only doctor who knows and understands Xavier’s unique case. Every doctor we’ve talked to says we are in a “grey” area. We have been released from the transplant team but we still have yet to meet and be under the care of our new doctor. If I hear that we are in the “grey” area one more time I swear…

We felt like we were being diagnosed for the second time. This was too much. We have been through hell and back trying to get rid of Xavier’s leukemia and now not only does he still have the disease, we now face having it in the spine? The doctor made what I feel was a very smart move on his part and decided to immediately make a phone call to the doctor we said we need to consult before moving forward with anything. About an hour later he came back in our room and said that leukemia of the spine was actually NOT the initial concern. He basically retracted most of his statement he had made earlier in the most unapologetic way he could. But it didn’t matter. What was said was said. The scare was now in us and we needed to find out what was going on.

Just know that I waited a few weeks to write this blog post because I knew that I had to have time to cool off first. I do not understand why this doctor told us the things that he did that evening and it will haunt us for quite some time. I do know, however, that I respect all doctors. What he said to us was wrong on many levels but I know deep down that he has done way too much good for other patients to put him down any further. No doubt he has done great things for other children and I am so grateful for that. For every doctor trying to make good judgements and do right by their patients. It is not ok to knock someone down when they are doing something you could never do yourself. But, dang it dude, why!?

The next day the transplant team made their rounds. We expressed to them that we did not want to do the spinal tap because of risk of the leukemia spreading. The attending doctor (whom by the way we have seen many times and I actually like very much) said that she looked at Xavier’s file and it showed his leukemia was now undetectable. WHAT?!? While that would be the best news IN the world, we knew that was not the case. What!?! We explained that yes, yes he still does have leukemia in his blood. We also told her how we are now concerned about leukemia being in Xavier’s spine since talking to the doctor the night before. She was so taken aback by what the doctor had said. She told us that while they cannot tell us that he does not have it, it would be very, very unlikely. She also let us know that the chances of the leukemia transferring into the spinal fluid from the spinal tap is so very tiny. In lieu of all of these new scares that had been put into us, we made the difficult decision to move forward with the spinal tap. In addition, they decided to do an early BCR-ABL blood test to see how much leukemia was in the blood. What was once just a concern of viral meningitis, something that was not serious and would go away on its own, now had snowballed into the possibility more leukemia.

Xavier did the procedure, handled the anesthesia fine and over the course of the day began to feel better. He had been put on a broad spectrum antibiotic the moment we were admitted to the cancer unit. It was one I had never heard of but I guess this one was just as broad as the others but more focused in a certain area. There was something about this antibiotic that was definitely working. Xavier was feeling really, really good. Better than we had seen him since probably day +100.

We got the initial results of the spinal tap that evening and everything looked clear. That was great news. While it was still just the initial results, it looked like Xavier definitely did NOT have leukemia in the spine, no virus in the spinal fluid and no meningitis. It really did not surprise John and me because from the beginning we did not think it was meningitis. There were not enough symptoms there. The Ibuprofen relieved his neck pain. If he had meningitis that would not happen. We gave Xavier valium which relaxed him but didn’t help his neck. But if it wasn’t any of these things…. What was the cause?? We still don’t know.

What we do now….

We received the results of the BCR-ABL tests that checked for how much leukemia was in Xavier’s blood. Again, we were not going to be taking this test until the end of October but because of new concerns we took it early. Drum roll…. The doctor let us know that it had stayed stable at >.01%. Wait, What? NO. So after John explained that they were looking at the results wrong…. Yay! It had actually gone down from .03% to >.01% and we are so excited! While we did not get the undetectable we are waiting for, this means that W’s t-cells ARE attacking the remaining leukemia cells. Not any chemo, but the donor t-cells are making this happen. It was the right move to take Xavier off of his immunosuppressant’s early. GREAT NEWS. Best news we have received thus far.

While we were waiting to be discharged we noticed they decided to skip over us in rounds and it was getting very late in the day. We were told we would be discharged in the morning. We mentioned this to the nurse and she let us know that the doctors were waiting for information back from the center for disease control and prevention. She wasn’t sure why. What?! That got us worried no doubt. Maybe they did find something and we just didn’t know about it yet? The team finally came in and the doctor started off by apologizing. I’m still a bit confused what exactly the mistake was but I guess when doing the spinal tap the meningitis test was never sent because., by what was being said, it sounds like there are new tests now that check meningitis without a spinal tap. But I’m still not sure, I was confused. All I knew in that moment is that what was done was done, all test (that were run) were clear and I just want to get my boys home.

I am so happy to report that Xavier has been feeling better than ever since being released from the hospital. Before we went in, Xavier had been experiencing pain in the stomach a few times a day. Since being release he has not mentioned it once. Seriously, we will probably never know what exactly was going on but I do know that there is something about that antibiotic that made him feel better.

Now we are still dealing with things here and there. Just last week we had a bit of a scare with an enlarged testicle. Ultrasound thankfully found no masses and it is actually liquid, proteins and other derbies around it. We have a follow-up appointment with the urologist but he did not feel like there was an immediate need to take action and is not too concerned. It kind of makes sense really… All of the high fevers, virus, antibiotics and just other crazy things that have been going on in his body over the last month +. While we don’t like that this happened to Xavier, at least SOMETHING makes sense!

In the hospital one day, on the course the next!

After all of this, I am just going to hold onto all of the good that has come out of such a hard situation. I am letting go of the frustration. Right now…. Ok, well very soon.

Xavier’s next BCR-ABL test will now take place end of November. At this time, decisions will need to be made. Either we are good and undetectable or we will need to intervene with DLI or going back on TKI for a few years. We need to see undetectable and right now at >.01%. We could not be any closer. This has no doubt been a mentally rough couple of months. No easy way to put it. Xavier is so strong. Please continue to root for him. We are so, so close!

Didn’t I say I was going to be as to-the-point as possible? Yikes. Well, one novel later…

 

 

Exactly 100 days ago I was sitting in a hospital room, holding Xavier close, and wondering where we would be and what I would be feeling in this vey moment…

Today marks 100 days since Xavier’s big brother W courageously went into surgery to have his bone marrow harvested in order to help his little brother, his best friend, get his new healthy cells. Xavier’s blood was sick and W knew he had a chance to help make it better.

So with that introduction, you may be expecting to hear me rattle off all of the emotions I am feeling today. But, aside from the feeling that I am insanely proud of my boys (that’s an understatement by the way), I can’t say a whole lot more.

Day +100 post bone marrow transplant is considered a very important milestone, for many reasons. The most important being, in my opinion, because this is when the greatest risk for critical transplant related effects have past and you begin the next stage of long term recovery. Every patients recovery is different. Some go back for more treatment, some are followed by GVHD specialists, some even get released back to their general practitioner. For us, at this point, we don’t really fit into any of these categories. In fact, our doctor didn’t really know what to do with us. I guess this should come as no surprise as Xavier’s case has never been “by the book”.

Let’s cut to the chase. Day +80 test results came back and we are still showing residual molecular disease in the blood (0.03%) and marrow (<0.01%). This is stable (unchanged) from his previous testing at day +56. The peripheral blood and chimerism studies showed 87% donor engraftment for the T cells (increase from 82% on day +52).  With this result, the doctor suggest we wait before we intervene. The tests were taken only 10 days after weaning off of his immunosuppressant’s completely. Remember, we stopped them very early in order to help encourage W’s T cells to take over instead of suppressing them. In doing so we had increased change for GVHD, but as of now there is now sign of it.

We received all of this information in our “release” day +80 conference with the team at SCCA. The doctor let us know what he was encouraged by the fact that the chimerisms had increased and disease in the blood and marrow had not increased. With that, he feels good staying the course. More waiting. We test again end of October.

Post-transplant wise, Xavier is doing phenomenal. The doctor is incredibly pleased. Xavier is down to one medication. ONE! That, 100 days post transplant, is almost unheard of. This brings us back to what I touched on earlier… now that Xavier is released from the transplant center, who is his doctor? Xavier’s case is so unique that there is really not an oncologist that would fit our case. The doctor felt that we would be best seeing one of his collogues who is currently out of SCCA. She mainly deals with GVHD but he felt this would be good for us until we know more and then we’d go see him at 6 months post.

Ok, so this is kind of like writing paperwork right now. There are too many other things going on for any more facts, numbers or percentages.

Xavier’s big brother W started Kindergarten! He loves school so I am so glad he gets to do something every day that he looks forward to! He’s been through a lot so naturally, anything that makes W happy, makes us happy. He deserves the world!

 

 

Xavier also started school! No, not “real” school. The doctors will not allow that until a year post transplant. He now goes to “Xavier School”.

Can you guess who named it?!

Xavier was incredibly sad to know that he would not be able to attend school this year. He is so incredibly ready! Yes, it is just pre-school, but the fact that he can’t go because his health will not allow it, not because it is our own personal choice, just saddens me to the core. Really. But despite my personal sadness, I am sure that it would not compare to that of a child that has already been going to school. To take them away from everything they know, their friends, teachers, and activities. It’s on a whole other level. I am thankful that I am able to do Xavier School with him a few times a week and teach him what I can. We will look forward to next year when he can be in class with his peers. Xavier already says, “School has too many rules!” I guess I am a strict teacher!

Last week Xavier had his central line pulled! The surgery part was not fun, but Xavier was so thrilled to have his tummy back!

Two days after Xavier’s central line was pulled we were admitted into the hospital for high fever. This was our first time back since transplant. Talk about bad timing. Since Xavier’s central line was no longer there for easy infusions and blood draws he had an IV in his arm… that leaked so they moved it to his hand. They couldn’t draw from the IV’s so they had to poke him like crazy. Gosh, in that moment we really missed the central line.

After A LOT of testing and some very high fever spikes, it came back that Xavier had the common cold. If you or I had this cold, we may not even show any symptoms, but for someone like Xavier less than a year post transplant, he was incredibly effected. 5 days in the hospital for the common cold. This is why we have to be so cautious. Enough said.

Here’s to my handsome little man… Your bravery inspires us, your attitude is always uplifting and your silly sense of humor is everything! You may just be 3 years old, but your strength and courage exceeds your years.

Happy +100 Days Post Donor Bone Marrow Transplant Xavier!

If only things could be simple.

A few weeks back we received a call from Xavier’s doctor with results from his Day +56 blood tests. John answered and it was immediately apparent that it was not going to be a quick conversation letting us know that everything is on track and looking good. Nope. It was a conversation that consisted of the Doctor letting us know that we needed to make a new plan, and fast.

In our first round of testing at Day +28, Xavier’s blood (not bone marrow) had come back undetectable for CML. No leukemia. The new tests said otherwise. At what percentage, I don’t even remember to be honest. I couldn’t get past the fact that it was now positive.

In addition, the chimerism test showed that W’s cells only made up 82%. We were hoping to see 100% chemistry. This is an important test done after a donor bone marrow transplant that involves identifying the genetic profiles of the recipient and donor, then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

In that moment all I can think besides being sick to my stomach is LEAVE XAVIER ALONE! What the heck! And by the way that is the PG version of what was going through my mind… This exact feeling still runs through me multiple times a day. But can you really blame me…

We got this unsettling news on a Thursday evening and it also happened to be our doctors very last day attending at the SCCA clinic. Go figure, right? Anyway, she gave us an idea of what she thought we should do moving forward, but said to wait for the new attending doctor to give us a call the next morning…. Yes, it was a long night. We’ve had a lot of pretty good punches to the gut over the last couple years but there was something about this one that really made it hard for us to catch our breath.

The new attending, whom by the way does have some knowledge of CML (our other doctor did not), called us the next morning. He asked us some questions as he was completely new to our case aside from a brief conversation he had with our previous doctor the night before and Xavier’s file on his desk.

The first thing that I must say is that he let us know there is hope that we can get rid of this nasty leukemia, and a good chance at that. We do have a few options, however this is not the way any of us wanted to go about it.

What we really need to see is Westin’s cells blasting out the remainder of Xavier’s cells. That is where the residual leukemia is. Again, we’re at 82%, we need to be at 100%.

Option #1: Quickly wean Xavier off of Tacrolimus (Tacro), the immunosuppressant that Xavier is on to prevent and treat Graph vs. Host Disease (GVHD).

Option #2: Start back on a TKI (the targeted therapy/chemo we were taking the year prior to transplant) AND a Donor lymphocyte infusion (DIL). This is taking blood from the Xavier’s big brother (his original donor) and infusing it into Xavier.

The goal of either option would be to hopefully create minor GVHD so the donor t-cells will overtake Xavier’s cells to eliminate the residual leukemia and bring the chemistry to 100%. Both have their risks, but we decided that option #1 made the most sense for our situation. Option #2 is still there if we need it.

What normally takes months to wean off of, we got Xavier off of his Tacro in 2 weeks. Done. He is completely off. He is doing great. He has had no signs of GVHD but we are hopeful that just the very act of getting off this immunosuppressant will allow the donor t-cells to take over. Xavier has his Day +80 bone marrow biopsy and blood tests in the beginning of September. All we do now is wait.

In our last appointment, the doctor asked us if we were frustrated. I was taken aback by the question. Frustrated? No. We know we really have no choice and that this is the next step for us. We need to be patient and wait to see what the next round of testing indicates. What we do feel is anxiety. We are anxious. We are coping and living our day-today life the best we can, I think pretty fantastic considering. We are taking it in stride. It hurts but we have no control in this moment and we won’t let that get the best of us.

I think that it is incredibly important to note that Xavier, while we had some concerning news a few weeks ago, he is doing beautifully! SO good. He is happy, smiling, laughing, playing with his big brother, golfing with Daddy!

Soccer Dance! He is just an absolute pleasure to be around. John and I hear him laughing and telling jokes and it brings us this insane amount of joy and it’s just like… that is it. That is what we needed today. Our day is complete. There is definitely something about this kid… And his big brother.

You know, we are not cruising through this like we had hoped for, but that does not mean we won’t get to our destination. We are taking the alternate route, set on cruise control, and we’ll get there when the time is right.

A few weeks back we got a phone call from our doctors at SCCA. Xavier had multiple tests at day +28 and the results had come back. We were anxiously waiting for this call. This is basically the first time after transplant you get tested and they can tell you how well the donor cells from the transplant took and how many Leukemia cells are left. The bone marrow test is the deeper and most sensitive of two test taken for determining if Leukemia is present.

The phone call came in and immediately we got the old, “hey, it’s not the news we were hoping for, but…  That “but…” that really doesn’t help you in that moment when you are waiting to hear something great, and then you hear that things aren’t quite what we had hoped for. Not yet at least…

As it turns out, Xavier’s CML did come back detectable in the bone marrow at >.01%. Even though we did know this was a possibility, we still felt somewhat blindsided with this result. Even at such a minimal amount, detectable is detectable. We also learned that W’s white cells only make up 79%. Of course what you hope to see is the chemistry being at 100% donor.

Our doctor continued to tell us that because Xavier is such a unique case, she had emailed an adult CML specialist that just happened to be attending at SCCA. By the way, I love that our doctor was able to acknowledge that our case is not something she has a lot of experience with and put ego aside to get the advice of another doctor. The adult CML specialist let our doctor know that this is very common for a CML patient. For adults, they don’t even take this test until day +56 or +80. He said absolutely do not put Xavier back on a TKI. He felt we were still on track and looking good.

After the conversation with the doctor and being able to process the information, it still left us feeling a bit confused and uneasy. John actually called and gave our nurse a couple of questions so she could relay them to our doctor prior to our appointment the next day.

At our appointment, instead of our doctor answering our questions we had given to the nurse, she did one better. She tracked down the adult CML specialist and he made time in between his patients to answer the questions himself. We got a lot of clarity and felt much better after talking with him. Simply put, it is now the job of W’s immune system to wipe the remaining leukemia cells in Xavier’s marrow away.

Again, major kudos to our doctor because had she not reached out to the adult CML specialist I really think her instinct after still seeing signs of leukemia in the marrow would have been to put Xavier back on a TKI.

A few days later we got the other test back that tests the amount of leukemia in the peripheral blood. It came back undetectable! That was great news! We will be doing the peripheral blood test again this next week and also the chemistry test. We hope to see undetectable once again with donor cells higher than the original 79%. Then, day +80 we will do the bone marrow test again. It’s so hard to be patient during this process!

When you look at Xavier, you don’t see a young boy who has just undergone a bone marrow transplant. You see a vibrant, mature little boy full of amazing energy and excitement. You see a boy that is so very strong and so very ready to take on the world. Xavier can’t go out and be like all of the other kids.

He still has a very weak immune system and is susceptible to dangerous infections that his body is not yet ready to fight. He’s taking medications that severely suppresses his immune system.

tiny golfer video

The other day Xavier and I were sitting on our front porch. A few of the neighborhood kids we outside playing a game and noticeably having a great time. As Xavier contently sat there watching the kids, he started smiling and giggling as though he were present there in that moment with his friends. He was whispering to me the play-by-play of the game as he watched from a distance… While Xavier is only three years old, he has been absolutely remarkable at understanding his restrictions. From the moment he entered the hospital to start his bone marrow transplant to today, he doesn’t question when we tell him something is not a good idea. He doesn’t get upset when we say something he is about to do will make him sick. He stops and doesn’t think about doing whatever that act is again. There are so many things that must be completely confusing to him, but he has fully grasped the fact that in order to get better, he needs to listen to what his parents and doctors say. And dare I point out that this is a concept that many, many adults have yet to grasp or accept. Just saying…

While it is absolutely fantastic to be home, we are incredibly busy with post-transplant home care. Even when we are physically not busy doing something. We are busy! Our minds that is. It is absolutely imperative to be on your caregiver game!

Most of Xavier’s meds we take twice daily with a tiny bit of flexibly in when we give each dose. Those meds include antiviral, antifungal, drugs to prevent pneumonia, drugs to prevent liver toxicity, nausea… You get the picture. Every single one Xavier takes in pill form, orally. There are two other pills that are a bit trickier. One which seems incredibly simple but very important which is magnesium. They keep increasing his dose so he currently takes 4 huge magnesium pill a day. If your magnesium levels are too low you are at high risk for seizure. Then there is the infamous Tacrolimus that is imperative for all donor bone marrow transplant patients to take. The job of the Tacro is to prevent and treat GVHD. He takes one capsule every 8 hours. On the dot. That means one pill at 1AM every day. The doctors draw Tacro levels two times a week to make certain you are at a therapeutic level and they change accordingly. And I guess I can’t forget the all-important multivitamin gummy bears…

Xavier has been doing incredibly well all things considered. The only thing that we are having a hard time with is hydration. Xavier needs to consume 42oz. of liquid a day. While we work hard on this and he slowly consumes more and more each day, we are still quite far from the required 42oz.

To get the additional liquids in that we cannot get orally we hook Xavier up to nightly fluids. This goes through his central line. We started at 1000ml over 12 hours and today we are at 500ml over 5 hours. We are making progress! We hook him up at 8PM and unhook him at 1AM. We can’t wait to get Xavier’s central line removed but until he can drink the full amount orally, he needs to keep it in.

In all of this chaos that is our life in this moment, sometimes it’s hard to truly appreciate how far we’ve come. I do believe that part of why it’s hard for us to see our amazing strides forward to this moment is because we didn’t exactly get the results we are looking for. I can admit that. But, when you look beyond the initial test result… Wow, we are on the other side of transplant and he is recovering remarkably. Remarkably.

No matter what challenges get thrown our way, including those of emotional pain and heartache, I will never forget that we are incredibly blessed.

So it’s true that some good things just take time. And while we were being as patient as possible, when Xavier’s ANC and white blood cell count started to taper off and make more dips than rises, I would be fooling myself to say I was not concerned. We were all waiting for the big jump in his numbers and it just was not happening. I was getting nervous and didn’t know what the next steps would be.

On the morning of day +23 the attending doctor came in and said that they were going to be giving Xavier a dose of GCSF (Granulocyte Colony-Stimulating Factor). This drug stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream. Basically, this drug would be giving Xavier a huge artificial bump in his white blood cells therefor increasing his ANC. I was not expecting this… I didn’t know they had been contemplating GCSF for Xavier. The doctor said that he typically would not give this drug as early as day +23 but because Xavier was doing so well otherwise, he felt it was time. You could tell that the doctor was still a bit perplexed by why Xavier’s ANC had not yet got the big boost organically, but when we mentioned Xavier’s lack of appetite and tummy issues he almost looked excited, like he may have solved the puzzle. He felt this was a possible sign of GVHD of the gut which could easily explain why Xavier’s cells had yet to make the big jump. The doctor decided to set up and endoscopy to examine Xavier’s stomach, digestive tract and get a biopsy to test for GVHD. This procedure would be a couple days out.

Come the next morning Xavier’s ANC jumped for the 400s to the 4000s. That was a very “robust” as the call it, jump in ANC. They made certain that we knew that because it was an artificial jump, his ANC would be making its way back down. But, hopefully this will encourage Xavier’s own cells (or should I say W’s cells) to be on the rise. Just as I said some good things take time, well… some good things just take a little nudge in the right direction. Well, in our case this was a big nudge.

So with Xavier’s ANC now well above the threshold of 500, the doctors decided to give us a 4 hour pass!!! This means getting unhooked from his machine and leaving the hospital! This was Xavier’s first time outside in over 34 days!

The nurse unhooked Xavier, we popped on sunscreen, signed liability paperwork, and we were off! Xavier was so excited. We put some gloves on him so he could finally push open that door he had asked to go through so many times before. This time we could finally say YES! It was finally Xavier’s time. He made his way through the door and to the elevator where he got to push the button to the lobby and we made our way outside.

Immediately, it was like Xavier was experiencing everything for the first time. It was as if he had a whole new appreciate for the small things we normally take for granted. It was a truly beautiful moment I will never forget.

Xavier stepping outside!

Day +25 was a chaotic, stressful, frustrating, and beautiful, BEAUTIFUL day! Yes, ALL of that.

There are three important criteria for getting out of the hospital after a bone marrow transplant…

1. No fevers within 48 hours, CHECK. Hadn’t had one since the day we were admitted due to Xavier’s central line surgery.
2. Keeping down medications, CHECK. As long as it is pill form we are golden!
3. An ANC over 500 for more than two days, CHECK. Thanks to GCSF, but who’s really keeping track anyway…

So yes, the above means exactly what you are now thinking… Xavier should be close to going home! We just had one thing to get through first. The endoscopy procedure to look for potential GVHD. The procedure was not scheduled until 4pm. This meant Xavier could not eat the whole day. It was so ironic that we were getting this procedure done partially because he was not eating and then Xavier wakes up hungrier than I had ever seen him. Seriously…. Of course he would want to start eating the day we stopped encouraging it. He kept asking the nurses for peanut butter. ALL DAY!

4pm and they finally came to take Xavier down to his procedure. They did not make him ride on the bed which I was SO thankful for. We were able to just walk beside it since he was feeling great. They also did not make him wear the gown which made life so much easier on me and John. Few! Xavier’s procedure went great. They allowed me to come back to the recovery room because Xavier doesn’t always wake up from anesthesia well. When Xavier and I got back up to our room everything was ready to go… the doctor just needed to make sure Xavier was recovering well from his procedure, which he was! So just like that we were on our way home to W!

W had a beautiful welcome home poster and balloons for his little brother. Xavier was ready to be home and W was so very ready for us to be home with him as well. He was so happy. We were all so happy.

I’m not going to lie, I was completely overwhelmed because we now have so much to do ourselves for Xavier’s care, but we can do it! Loads of medications, nightly fluids through his central line, daily saline and heparin flushes, lots of appointments… BUT all so worth it to be home. Again, we can do it!

It turns out that Xavier does have a very mild case of GVHD of the Gut. The doctor does not want to start him on prednisone just yet as she thinks we should only start treating it if it flares up. We are ok with this and will just continue to monitor it incredibly closely. The doctors also reiterated that while Xavier does have an ANC now, all of his cells are incredibly immature and will be for quite some time. It’s like they have been completely re-booted and they are fragile. His risk for serious infections are still extremely high. That being said, we must have to be incredibly careful… and we will be.

Today, Day +28 was another big day because Xavier went in for his 28 day bone aspirate. This is the first time since transplant that they are testing him for signs of his CML and also his blood chemistry to see how well Westin’s cells have taken over. We get the results next week and I am already incredibly nervous. But so very hopeful!

It has all been leading up to this…