Exactly 100 days ago I was sitting in a hospital room, holding Xavier close, and wondering where we would be and what I would be feeling in this vey moment…

Today marks 100 days since Xavier’s big brother W courageously went into surgery to have his bone marrow harvested in order to help his little brother, his best friend, get his new healthy cells. Xavier’s blood was sick and W knew he had a chance to help make it better.

So with that introduction, you may be expecting to hear me rattle off all of the emotions I am feeling today. But, aside from the feeling that I am insanely proud of my boys (that’s an understatement by the way), I can’t say a whole lot more.

Day +100 post bone marrow transplant is considered a very important milestone, for many reasons. The most important being, in my opinion, because this is when the greatest risk for critical transplant related effects have past and you begin the next stage of long term recovery. Every patients recovery is different. Some go back for more treatment, some are followed by GVHD specialists, some even get released back to their general practitioner. For us, at this point, we don’t really fit into any of these categories. In fact, our doctor didn’t really know what to do with us. I guess this should come as no surprise as Xavier’s case has never been “by the book”.

Let’s cut to the chase. Day +80 test results came back and we are still showing residual molecular disease in the blood (0.03%) and marrow (<0.01%). This is stable (unchanged) from his previous testing at day +56. The peripheral blood and chimerism studies showed 87% donor engraftment for the T cells (increase from 82% on day +52).  With this result, the doctor suggest we wait before we intervene. The tests were taken only 10 days after weaning off of his immunosuppressant’s completely. Remember, we stopped them very early in order to help encourage W’s T cells to take over instead of suppressing them. In doing so we had increased change for GVHD, but as of now there is now sign of it.

We received all of this information in our “release” day +80 conference with the team at SCCA. The doctor let us know what he was encouraged by the fact that the chimerisms had increased and disease in the blood and marrow had not increased. With that, he feels good staying the course. More waiting. We test again end of October.

Post-transplant wise, Xavier is doing phenomenal. The doctor is incredibly pleased. Xavier is down to one medication. ONE! That, 100 days post transplant, is almost unheard of. This brings us back to what I touched on earlier… now that Xavier is released from the transplant center, who is his doctor? Xavier’s case is so unique that there is really not an oncologist that would fit our case. The doctor felt that we would be best seeing one of his collogues who is currently out of SCCA. She mainly deals with GVHD but he felt this would be good for us until we know more and then we’d go see him at 6 months post.

Ok, so this is kind of like writing paperwork right now. There are too many other things going on for any more facts, numbers or percentages.

Xavier’s big brother W started Kindergarten! He loves school so I am so glad he gets to do something every day that he looks forward to! He’s been through a lot so naturally, anything that makes W happy, makes us happy. He deserves the world!

 

 

Xavier also started school! No, not “real” school. The doctors will not allow that until a year post transplant. He now goes to “Xavier School”.

Can you guess who named it?!

Xavier was incredibly sad to know that he would not be able to attend school this year. He is so incredibly ready! Yes, it is just pre-school, but the fact that he can’t go because his health will not allow it, not because it is our own personal choice, just saddens me to the core. Really. But despite my personal sadness, I am sure that it would not compare to that of a child that has already been going to school. To take them away from everything they know, their friends, teachers, and activities. It’s on a whole other level. I am thankful that I am able to do Xavier School with him a few times a week and teach him what I can. We will look forward to next year when he can be in class with his peers. Xavier already says, “School has too many rules!” I guess I am a strict teacher!

Last week Xavier had his central line pulled! The surgery part was not fun, but Xavier was so thrilled to have his tummy back!

Two days after Xavier’s central line was pulled we were admitted into the hospital for high fever. This was our first time back since transplant. Talk about bad timing. Since Xavier’s central line was no longer there for easy infusions and blood draws he had an IV in his arm… that leaked so they moved it to his hand. They couldn’t draw from the IV’s so they had to poke him like crazy. Gosh, in that moment we really missed the central line.

After A LOT of testing and some very high fever spikes, it came back that Xavier had the common cold. If you or I had this cold, we may not even show any symptoms, but for someone like Xavier less than a year post transplant, he was incredibly effected. 5 days in the hospital for the common cold. This is why we have to be so cautious. Enough said.

Here’s to my handsome little man… Your bravery inspires us, your attitude is always uplifting and your silly sense of humor is everything! You may just be 3 years old, but your strength and courage exceeds your years.

Happy +100 Days Post Donor Bone Marrow Transplant Xavier!