It has been an overwhelming week. But together, we made it!

The pre-transplant testing is now well underway. In fact, we are already half way there. Things are really starting to move along quickly. It is a completely different pace then we have been used to, but we are fine with it. We are SO done with “waiting mode”.  We know that this road ahead is only going to get more difficult on all of us, but we are ready to move forward and take things as they come.

We arrived at Seattle Cancer Care Alliance (SCCA) on Tuesday with our boys. Right out of the gate SCCA wants to see both donor and recipient. They need to make sure that Xavier is at the right point in treatment to undergo such an intense chemo regimen and they also need to make sure that W is a viable donor (completely healthy).

From the moment we arrived, we were welcomed in a fashion that really helped decrease the anxiety of the whole situation. I was most concerned about Xavier’s big brother “W” as he typically does not like going to the doctor. The pediatric team at SCCA were fantastic with both boys and made them feel very comfortable.

The first thing we did was go over our schedule for the next two weeks. Oh, it was exhausting just to look at! We also went over an insane amount of paperwork. It’s funny because after the day was complete, I was thinking to myself that I probably only really retained about 20% of all the information given to us. However the rest I wasn’t too worried about because I knew we would get to it again throughout the next two weeks.

Being that we have both the donor and the recipient in our family it really makes it more challenging. It’s a bit of a juggling act through the whole process. Oh, but please know that I am so very, very thankful that we do have this challenge. I am SO very thankful that my boys are a complete 10/10 match. In fact, the compatibility report the doctor showed us actually says they are a 12/12 match. That said though, for HLA typing they only look at 10 marks.

With having both boys as donor and recipient, they had to split us up a lot of the day because legally the boys can’t be seen by the same doctor. I went with W, and John stayed with Xavier. They both did great on their own but together they were amazing too. Xavier was so excited to show W how cool going to the doctor really can be. You get to push buttons and meet new people. OH and don’t forget the cool prizes!

Throughout the first day they both had full physicals, a full blood workup, tour of SCCA, and numerous meetings. We were emotionally exhausted but that didn’t overshadow how very proud we were of both boys. W is now done with his appointments until 2 days before marrow donation.

 

 

 

 

 

 

 

 

All in a day’s work, right…

Day two went very smoothly. We met with the nutritionist first. She measured Xavier’s muscle mass and height/weight index. They will need to track Xavier’s growth for quite some time as transplant related toxicities can effect things such as longitude growth and puberty down the road. The nutritionist also went over what a safe diet will look like over the course of the next few months. It wasn’t too far off from the precautions we already take, however we will be taking a food prep class before coming home from the hospital which will be good information I’m sure. In a situation in which you have little control, I think it is important to be very thoughtful in the things in which you do control. That said, I want to be certain that the food we give Xavier is prepared with complete precautions.

After the nutritionist, we had a meeting with the social worker who was very kind. We didn’t have much at this time to speak with her about so it was somewhat uneventful. She did however talk about getting Xavier signed up for the Make A Wish foundation. This actually kind of made things more real… She made sure that we knew that while it is for children with life threatening illnesses, it can also be for after the child has beaten their illness or disease. It was still a little hard to talk about though…

Anyway, we then went to Xavier’s arrival conference with the doctor to go through the ins and outs of transplant for Xavier. It was basically a re-run of the meeting we initially had with them months prior. Yes, it’s hard to hear potential things that can go array during transplant, but it was something we have already heard so thankfully there were no surprises. This is not anything that I find the need to go into depth with because while they give you all of the potential risks, that doesn’t mean they will happen. We will take things as they come. It’s the only way.

Thursday we started at SCCA for a blood draw and IV insert. They took the maximum amount of blood they can for his body weight which seemed like so much! Xavier was fantastic as usual. He just let the nurses do what they needed to do. Then we headed to Children’s Hospital for a chest x-ray which Xavier handled ike a complete champ. He even smiled and said, “Cheese!”.

Our last stop of the day was to the Oncology clinic for Xavier’s Bone Marrow Aspirate. It is always hard for me to see him go under anesthesia. He is so darn brave it’s ridiculous. He did great. He didn’t come out of the anesthesia very happy though. Typically, this is not a problem. He recovered pretty quickly though.

Friday Xavier had an EKG and an Echocardiogram at Children’s. He has had these before and in true Xavier fashion, he did wonderful. After these appointments we headed over to SCCA for our meeting with the teams pharmacist. We went over a lot of the medications that Xavier will be taking. He has already started a few that are supposed to help protect some of his organs from the high intensity chemo. The pharmacist was so helpful in answering questions and he let us know that we can always call him if there is any question about Xavier’s regimen. That makes me feel good to know this considering when we are released from impatient stay he will be on about 15-20 different medications. Yikes! We will have questions!

After the great meeting with the pharmacist we met with the doctor who will be doing W’s surgery. We went through everything we will need to know about how the procedure is done. He also reiterated how important it is that Westin not get sick before donation. The doctor then reviewed all of Westin’s blood tests. He said the beautiful words… “Westin is a healthy boy and is cleared for donation”. I knew this in my heart but it just feels so good to hear. We have been through hell and back the past year and… well, it was good to hear.

So, I can’t say this was very eloquently written, but I wanted to get our whole weeks re-cap out there. We have another full schedule next week and we are prepared to take it on with the strength we had this past week. It’s funny because people always think it’s the parent’s strength that gets a child through a very difficult time. And I believe that. But in our situation, it has truly been the strength of Xavier that has helped John and I be as tough as we are. I can’t even put into words how his bravery has been contagious for the whole family. I feel so incredibly blessed to have all three of my boys.

Over the course of this last week the boys have been thrown curve ball after curve ball and they continue to have so much courage. Their lives have been different, and they are adapting. We had to take Westin out of school. He LOVES school. But he knows that he will be back next year. We have had to keep both Xavier and Westin from their friends and their Cousins. They love their Cousins more than anything. Change is difficult, especially when it happens during a difficult time in life. It is almost funny to me because as of right now, the things that are stressing me out the most have nothing to do with Xavier. I make a point though, to let those outside stresses go. Especially the ones you can’t control. Let go of that, and focus on what is important. My 3 handsome boys. I am blessed.