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…