As I sit here at 4:30am gathering my thoughts, I quickly realize I have done myself a huge disservice waiting this long to give an update on Xavier. I’d like to give a shout out to the 24 hour Starbucks here at Children’s Hospital. I’m serious, anyone who knows me well knows I’m not even joking. I am happy to report that while I’m awake, sipping coffee at this ridiculous hour, Xavier is sleeping soundly (and snoring a bit) without any discomfort. I am also happy to note that his comfortable sleep is not being aided by any pain or nausea medications. That in itself is a huge win. While I can’t wait to divulge all of the positive things that are happening with my courageous little man, I think it’s important to first take a step back and acknowledge some of the rather difficult challenges Xavier has experienced over the last couple weeks.
We have been dealing with nausea and vomiting on a daily basis, though it has gotten dramatically better. Typically he gets sick when he works himself up, is mad, or just when he wakes up in the morning which I think is pretty typical. We had to put the oral medications on hold for a bit because he couldn’t keep it down. Yesterday we gave it another go. We even lightly wrapped it in a fruit roll up!  We dropped the morning dose on the ground so we decided to just practice with a tiny piece of candy. He swallowed it great! Then last night we tried again, with the fruit roll up trick and he just threw it up. We’ll keep trying today!
One of my biggest fears going into transplant was knowing that there was a very large chance that Xavier would feel pain. Nausea I can deal with, but no one should have to feel pain. For a transplant patient, the main source of pain comes from the inflammation and ulceration of the mucous membranes lining the digestive track. Yep, that means from the mouth down to the bottom. And in our case, I emphasize the word BOTTOM!
While his mouth was a bit uncomfortable for a few days, it really wasn’t bad, considering. His bottom on the other hand started to cause server discomfort. It started off by poor little Xavier saying his booty is “bothering him”. It quickly spiraled into the discomfort being so bad that he was kicking his little legs around in what looked like severe pain. Our initial instinct was to try to calm him down with some pain medication. Morpheme is what they gave him. Tylenol is not an option because it masks fevers. The Morpheme not only did nothing for him, zero, it made him even more agitated. It was apparent to us that this was not a good drug for Xavier. We asked for some diaper rash cream and instantly, it made Xavier feel so much better. The relief from the cream only lasted about 5 minutes after we applied it and the doctors and nurses didn’t believe that it could just be a very severe case of diaper rash. For Me and John, we didn’t see why not. Xavier had a constant runny tummy every day since he started chemo. Anyway, the doctors encouraged us to start on Dilaudid. This narcotic was still not working. No one seemed to believe us that it was not working because it was not pain that needed drugs. The only time he felt relief was when we applied the “booty cream”. It finally got to the point to where one nurse saw his discomfort and insisted that we meet with the pain team to start a Dilaudid drip. Reluctantly we agreed to let them start on a low dose drip. It didn’t make any difference. The doctors made their rounds the next morning and said they wanted Xavier to stay on the pain drip because all BMT patients at some point are on a drip due to pain. We tried explaining how the cream was helping, but it didn’t matter. Thankfully, our nurse who was there at the time of rounds saw our situation first hand and said that she doesn’t think the doctors heard us, but she did. We explained that we didn’t think this situation called for the pain medication like they believe it did. Every child is different and we did not want him to be on pain meds just to be on pain meds cause most kids are. We did not feel that was OK. She tracked down the doctors who then sent in the pain team. Due to our persistence and knowing Xavier very well, they agreed to take Xavier off the drip as a test, and sure enough he perked up right away and was feeling so much better!! We continue to do our little routine of the “booty cream” and things just continually for better. He has been pain medication free ever since.
For myself, I do find it important to make note that while in Xavier’s case pain medication was not the right option for the type of discomfort he had, I don’t feel like anyone should feel severe pain. If we truly felt he was getting the relief he needed from the medications, we would have continued. I feel very strongly about this.
We have been dealing with increases blood pressure which the doctors were attributing to the pain. However, it could be because of one of the medications he’s currently on. It’s one of those things you just don’t know but continue to monitor closely. So far he has only had one dose of blood pressure medication so it’s not too bad.
We have been monitoring Xavier’s liver enzymes very closely. They have been quite high since chemo ended. We start to worry about more serious things like VOD which is one of the possible serious complication of the high dose chemotherapy. The good thing is that if you do have this, high liver enzymes are typically accompanied by a high bilirubin, increase liver size, and fluid retention. All of which Xavier does NOT have. We will continue to monitor closely.
Another thing we monitor daily are Xavier’s platelet and red blood cell counts. Until W’s cells decide to make their appearance (hopefully very soon), his platelets and red blood cells will only decrease. This means he will continue to get transfusions. He has gotten 2 platelet transfusions and 1 red blood cell transfusion thus far. After reading this mornings CBC (complete blood count) it looks like we’ll be getting more red blood cells tomorrow.
Big thank you to those who selflessly donate blood! Without all of your donations, many people just like Xavier would be in a very bad position. It may seem like a small thing to do, but it saves lives every day. You are making a huge difference!

There is just no way I can conclude this blog without talking about some of the non-transplant related “mishaps” that have occurred. There has always got to be a little extra drama to keep things interesting, right? Well… Sometimes less is more.
One of the main side effects of low platelet counts is the blood not clotting like it should. To the doctors amazement Xavier has been extremely active. So much so that the last couple of days he’s been taking little runs around the cancer unit. Also, the physical therapist has been taking him to the gym which he is SO excited about!! Being so active is definitely not typical for a patient that is day +14 Allo BMT. Really! So along with Xavier being incredibly active comes the increased risk of… Yes, you guessed it. Getting hurt.

He fell the other day and bruises appeared instantly in multiple places. They will not clear up until his brothers cells start to engraft. He also has a little cut and is still recovering from hitting his head on the corner of his machine. But like any tough little boy, he doesn’t mind.
So bumps and bruises we can handle, it’s part of being a kid. Waking up in the middle if the night to see your son sitting in a pool of blood is not something anyone is mentally prepared for. Yes, this really did happen. John was the one to discover it. Thankfully he got up in the middle of the night to go to the bathroom, came back, and saw it. He instantly ran out to find a nurse. It was not a situation where we were going to press the call button and wait for nurse assistance. The good news is that we immediately saw that he was not bleeding due to his central line breaking or injury. His tube broke. This is NOT supposed to happen. It was very scary. I was thankful that Xavier was so deep in sleep that he did not notice that he was covered in blood. I was able to get him cleaned up without him knowing what had really happened. We instantly worried about 2 things. One being the risk of infection due to the open line. Two being that the line that broke gets him his Tacrolimus which is a 24 hour drip to help prevent GVHD. The levels of Tacro are critical and strictly monitored. He must have been off of it for a good 4-6 hours judging by the amount of blood on the bed. Long story short, there was nothing we can do because what happened, happened. We continue diligently monitoring for infection and we get the Tacro levels back today and we just hope they are still at a therapeutic level.
So while I’ll hitting on a few more “dramatic” moments, there is just one more that happened the other night that was pretty intense. We woke up to loud screaming from the room next to us. It was so powerful in a way I just don’t know how to describe. A couple minutes later there were alarms going off and tons if people outside our room including security. We had no true idea what was going on but immediately felt for the family that would have to go through something like this, whatever the situation. The noises kept going through the night. We turned music up loud in our room  so Xavier could continue with uninterrupted sleep. Come morning things were still not settling down. Again, I felt and continue to feel for the family but new that if there was a possibility to change room, we had to take it! The nurses were definitely on board and we were able to move later that afternoon. Good thing too because they had about 20 visitors coming in and out so Xavier was not able to leave the room. We found out last night that there is still a lot of struggle with the patient but it is more of a neurological/medication thing rather than pain and the child should be ok. I was happy to hear that and absolutely wish then well. It’s always a chore to move but the good news is we have a nice view now. 🙂
John and I celebrated our 8 year anniversary together. Xavier was feeling really good that day so that was definitely the best gift ever!

I also had my Birthday and got to spend some time with Westin. That was definitely the highlight of the day. It’s REALLY very difficult on all of us not being together like we want to be. I think lately it’s been hardest on Westin. I just can’t even… It’s hard.

Brother love!
SO the next step is for Xavier’s Big Brother W’s cells to make a home and start ENGRAFTING! The doctors think it should be any day now! Xavier gets his blood drawn around midnight every day and we anxiously await his results. Can’t wait until tomorrow morning! We are Day +14 and Xavier is doing great! I can’t wait until we start talking more about gearing up to go home!!