Solidarity pajamas… A gateway drug of sorts

I really don’t know how to even begin taking about the last few days… I feel like we have lived a year.

When I last wrote on the 13th Ian’s white blood cell count had dropped back to zero. The next day it rose again to 0.1. Even the small improvement was a hopeful sign that the graft may be taking.

The next day was 16 days post transplant and his count increased to 0.2. We were so excited. The doctors were happy and we began to imagine about going home and getting back to normal life. At this point in has been in the hospital 24 days and there is no adjective that truly describes how awful it feels for him to not know when he will get out of here.

Then, he hit a wall. I think it was a mixture of building stress, exhaustion, and the paradox of staying hospitalized while he feels so well that drove him to a breaking point. He was ready to just leave. We are thankful for the doctors and nurses because they helped negotiate a way for him to stay. He is now able to see Tyler in a special conference room on the oncology ward and he is able to have some food from outside. They even said that if he is stable he can go outside to the healing garden for some time. For Ian, who has walked 6 miles a day on a nursing pod with a perimeter no greater than 50 yards, these small freedoms make such a difference.

Overnight, Ian developed a fever and it didn’t really stop all day today. Fevers can be harbingers of several things during the transplant process. Infection is a very real risk and concern and, as Ian does not have any natural immunity at this point, the doctors have strengthened his antibiotic regimen and stepped up his other anti-infectives. Fevers can also be a sign that cells are engrafting. More on this later.

This morning Ian’s counts dropped back down to 0.1. This news coupled with the fevers was extremely discouraging. Ian had to have another bone marrow biopsy yesterday morning ( a test where they drill out a core sample of your bone marrow from the back of your hip).

The doctors were testing to see if the graft had done anything at all at this point. If the bone marrow showed no signs of cell growth,frankly the ramifications would be serious. The only real reason the doctor could explain for why a graft wouldn’t work in the type of transplant Ian got would be if the bone marrow was irreparably damaged from the chemo he had received. This type of bone marrow damage is very difficult to treat and chances of long term survival are much lower.

We knew all of this and spent the morning finding ways to pass the time. We were scared. We walked, talked, and snuggled. We watched tv and tried to sleep but sleep was hard to come by. The biopsy results showed that all three blood lines are present – platelets, red blood cells, and white blood cells – in his bone marrow which means that’s these stem cells are engrafting. Ian is engrafting just slowly! It was very good news. Ian hugged his doctors. I hugged them too.

Every Dr at Mayo who is looking at our case agrees this is just a case of delayed engraftment. Even an expert in Seattle was very pleased with the case and agrees this is just a delayed engraftment. We have to wait is all. We are not sure for how long. So far all the tests for infection have come back negative. Our Drs believe that means the fevers are engraftment fevers, more good news. Once the fevers go away, Ian will be released and he can wait for eventual engraftment at home. We feel excited to see an end in sight.

Ian was surprised by some of his closest family and friends ( including me) who got tattoos that say “Jehovah rapha” in Hebrew which translates to “God heals”. If you remember, for Christmas Kit made us all pajamas with Jehovah rapha written on them.

Well my brothers first decided to take it to the next level from pajamas and get this tattooed on their arms. We all followed suit. We had planned a big tattoo reveal but Ian accidentally saw a photo on my phone so we just had people text pictures of their tattoos. Ian would see a picture, cry, see another picture, and cry some more. He was overwhelmed by this act of love and solidarity.

Thank you all for your love during this time. We continue moving forward and hoping anyday now that Ian will see his white blood cell count go up and fevers go away. Thank you for keeping us in your prayers.

-Shiloh