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…