With transplant day just a few days away, we had a lot of preparing to do! Xavier had to get through 2 more days of high intensity chemo. He did this like a champ! We even started declining some of the anti-nausea medications because he was feeling “good” and soon we decided to take him back down to just the base-line anti-nausea medication, Zofran. We spent much of our time in the hallways walking and kicking the beach ball. Without the anti-nausea medications that cause drowsiness, it was pretty much go-go all day.

Xavier has been working with the physical therapist and he thinks it is he coolest thing ever! They play basketball, pass the beach ball and many other creative games to keep him moving. They have music therapy too. The therapist came in and asked if Xavier wanted to join in with some other patients for group music. He was so excited! It was written all over his face with his cute little dimples. She came back a few minutes later and said she talked with his team of doctors and they said that would not be OK for him to as it’s too risky being around other patients. I felt so bad for him. On top of that, I was frustrated with the therapist for not checking with the doctors before inviting Xavier. Fortunately, she redeemed herself by comming in later that day and spending a lot of time playing instruments with Xavier. He had a wonderful time playing the drums and showing her what he could do on his ukulele!

Everything was great all-in-all, except for a very unfortunate and unexpected injury. Xavier made a quick move to avoid some medication and accidentally smacked his poor head on the corner of his machine. Of all things to happen… It is a pretty nice gash. We have to continue to put cream on it and keep a close eye on it but the doctors don’t seem too concerned, so I try not to be….

Xavier has been loving more than anything that his brother has been hanging out A LOT! It doesn’t matter how crummy Xavier feels, when his brother walks in that door he gets a brand new wind. Being with his brother takes his mind off of all that is going on. It’s more than anything John, myself or the doctors can do for Xavier.

In other words, W is Xavier’s best medicine. And I love it!!

W actually had a few more appointments at Seattle Cancer Care Alliance leading up to his bone marrow harvest. They needed to check his blood once again to make sure he was still in great shape for donation. Sure enough, everything looked fantastic! Couldn’t have been any better. When they were taking his blood, he thought that it was the actual marrow donation taking place. As they were putting the needle in his arm he was saying, “my bones, my bones!”  Haha, love him!

There is no doubt that it was hard on W to be pulled out of school and distanced from his friends and family for a few weeks to ensure he was healthy for donation, but it was so very worth it! Any viruses in w could have directly affected Xavier and I am so greatful we don’t have to worry about this. So very grateful.

The day before transplant is called “Rest Day”. After 8 long days of high intensity chemo, you get a break. This was perfect because we all got to celebrate John’s Birthday! The 4 of us had a great day! Both boys decorated cakes, we played games, and made things as fun as possible under the curcumstances for our special birthday boy! It was the perfect way to spend the day before transplant!

Day 0 – TRANSPLANT DAY!

Waking up transplant morning I had so many emotions running through me. This is the day we have been waiting to see for quite some time… And then some. SO beyond happy to see this day. But on the other hand, it was insanely difficult having both of my boys in the hospital. I desperately wanted to be with W, but Xavier needed me too. I new W would be in the best hands possible with John so that was incredibly comforting.

It was an early 6:15 am check-in for W at the outpatient surgery center. While Xavier was fast asleep, his big brother was prepping for his bone marrow harvest surgery. From what John described, W was just more scared than anything. He never complained or said he did not want to do it. At this point, it was very clear to W that he was doing this for his little brother and that was enough for him to be completely willing to go through something that can be quite terrifying for a young child. Or any adult for that matter!
After the surgery, the doctor had the post-op meeting with John and he let him know that the surgery went fantastic. They were able to get all the marrow they needed and only had to have 2 entry points on the back hip bones. The doctor then came up to Xavier’s room and relayed that information to me as well which I was so very appreciative of. As soon as W was awake and cleared, he was able to come up to Xavier’s room and rest there while we all waited for the cells to arrive.

Because the boys are an identical bone marrow match and the same blood type, they did not have to do any “cleaning” of the bone marrow. It got up here to the cancer unit pretty quickly but it then had to go through many, many checks and double checks before the nurse could bring it in. I was happy that we had a nurse that we like and are comfortable with. This is a BIG deal! She said this was her 6th transplant, 2nd being a sibling donor.

After it was all hooked up, Xavier wanted W to do the honors of pushing the start button. That was very nice of Xavier considering  pushing buttons is by far one of the coolest things he gets to do around here! I would love to tell you this super incredible story about how cool the actual transplant was, but it honestly was very uneventful. It is basically just like getting a blood transfusion. It went over about a 4 hour period.

 

 

 

 

 

 

Everything went very smoothly. Complications during the actual process of receiving cells are rare, but it does happen. He was watched incredibly closely throughout the whole day, more so than normal.

He didn’t mind though…

It is important to note that while the transplant itself was a major milestone, we are still no where near being out of the woods. We won’t truly be able to take a deep breath until the day the doctor comes in to say that Xavier has engraftment. Until then we hold our breath. It could be as little as 10 or as much as a few weeks. We just don’t know.

At the end of the day, John and I both felt a calming relief knowing that W’s part in this process was complete. Minus of course the dreaded bandage removal the next day… Again, we still have a very long road ahead, but we are moving forward.  John and I continue to feed off of Xavier’s incredible strength and courage throughout this process. After today, we are just that much closer to our beautiful sunrise…