Kolt Bone Marrow Transplant Update

The last update that I shared regarding Kolt was on February 17, 2018. On one hand, a lot has happened since then, and on the other, not very much has changed.. until this past Tuesday. Before going into all of the new stuff, if you want a refresher on what all is going on, and why we are sharing a bunch of “personal” medical things on our office website/blog, feel free to check out all of these posts to see the whole story. You can start here: Blog Post #1, Post 2, Post 3, Post 4, Post 5, Post 6, Post 7, Post 8, Post 9, Blog 10, Blog 11, Blog 12.

The original plan back in February was to have the pre-transplant consult on the 15th so that the following week we would be able to get started. That was not possible though as Kolt had an infection going on in his lungs that required a 21 day hospital stay with daily antibiotic treatment until his CT scans returned to normal. Our niece was able to come out and stay with us in order to help with getting the kids back and forth to school, food, etc. while I continued to work, and Stephanie was with Kolt in the hospital. The transplant was postponed until Kolt was back to normal, and the tentative date was set for early-mid May.

During this time, Stephanie and Kolt continued to remain isolated from friends, church, and other social activities, but the kids and I attempted to live our normal lives. Out niece was able to stay through most of May, and was a great help. As the May transplant date approached, we returned to the hospital again to make sure that Kolt was ready for everything, and that there were not any hidden infections that were going to prevent the transplant from happening. The good news is all of his tests came out clear! Unfortunately, Kambria, our daughter that is the bone marrow donor, did not get a clean bill of health. Similar to our issues with Kolt in February, Kambria presented to the hospital feeling great. She had plenty of energy, no fevers, and even though she had a dry cough, we did not think anything about it. Her laboratory tests showed a different story though. Kambria tested positive for adenovirus.

For most of us, adenovirus is not a big deal. It was not a big deal for Kambria. For those with weakened immune systems, like Kolt who would have gone through chemo and have no immune system at all, adenovirus has a high mortality rate. The doctors said there would be about an 80% chance of death if they transplanted Kambria’s bone marrow into Kolt if she was still producing adenovirus. Obviously, we chose to postpone the transplant again, and wait until Kambria cleared the virus on her own.

In order to help reduce her exposure to additional infections, we checked her out of school, and allowed her to continue the rest of her school year at home. She thought it was great, and was reminded how fun home schooling can be. Our youngest daughter joined her, but our oldest son asked to stay in school in order to make an easier transition into junior high.

This past Tuesday, June 12, we officially started on the transplant process. Two weeks prior to checking into the hospital, we put the family on lock down. No friends, no enclosed spaces (church, restaurants, car rides with non-family members, etc), and no chance of exposure. Everyone passed all of their tests, and Kolt was admitted into the hospital to officially start the process. I mentioned in an earlier post, that bone marrow transplants happen on “Day 0” and all of the scheduling follows a system by referencing the days in relationship to Day 0.

Kolt checked into the hospital on Day -10.

During this time leading up to the transplant, Stephanie remains at the hospital with Kolt, and does her best to help him to stay entertained while he feels miserable from the medications they are giving him. He is on a cocktail of chemotherapy medications, that cause sensitive tissues to become more sensitive, and can lead to nausea, pain, hair loss, and even seizures. In order to counteract the side effects of these chemo medications, additional medications are also being given, which have other side effects like fatigue and make mommy crazy.

Following the current plan, Kambria will go to the hospital on Day -1, and stay there over night. On Day 0, she will go under general anesthesia, and they will harvest a little bit of bone marrow from her hip. She will get to go through recovery in the same room as Kolt and Stephanie, so she is looking forward to that perk, even though she is nervous about the process. She will be released from the hospital on Day 1, and at that point the home isolation restrictions will be lifted, and the kids can go back to a fairly normal summer filled with friends, and other shenanigans. There are two neighborhood kids that come over every day and ask if the kids are out of solitary confinement.

Following the transplant, Kolt will remain in the hospital until his blood shows that engraftment has occurred. Generally speaking, this starts to show progress somewhere between day 20-30. This is measured through blood tests, which Kolt will get daily. Prior to getting checked into the hospital, he was given a central line (similar to the cool contraption that Stephanie received when she was in Philadelphia) but this one goes in through his chest, instead of the neck like Stephanie’s. Once Kolt’s absolute neutrophil count (ANC) is above 500 for at least three days in a row, he will be released from the hospital. Even though engraftment can be seen in blood work as early as day 20, it could take as long as 8 weeks or so before full engraftment is reached. Unfortunately, after the bone marrow transplant occurs, it will be a waiting game, and a whole lot of blood samples. The daily blood draws were the motivation for the central line. Attempting to collect blood from the arm every day would eventually cause the veins to collapse, and they would have to look for more draw sites. In addition to the ANC over 500 (normal range is between 1500-8000), he would also need to be holding down food, sleeping better, etc.

An example of the daily blood collection.

Regardless of when he is dismissed from thehospital, Kolt (and Stephanie) will remain in isolation until around Day 100. Upon reaching Day 100, his immune system would be considered on par with that of a newborn. Just like most newborns, we probably will not let him roll around in a bucket of e. coli, but he will be more likely to be taken out of the home.

We are hopeful for this process as it continues to unfold. All things considered, this style of bone marrow transplant, with a sibling donor, gives Kolt the best opportunity for a new, healthy immune system. We greatly appreciate the love and support that our family, friends, and patients have shown us throughout these past few years. Multiple family members have been able to (and will continue to) rearrange their schedules in order to help watch the kids. Our church Relief Society (women’s group) prepared a bunch of meals that we froze for easy to prepare dinners. (They did not trust my capacity to cook for my children, and made it dummy proof! Every frozen meal was hand cooked, prepared, and easy to read instructions [ie. place in oven @ 400 for 30 minutes]. These ladies are awesome!) Additionally, many patients, friends, and Facebook acquaintances, have reached out and offered their support, thoughts, and prayers. Your love has been felt, and is appreciated.

One family from church has been keeping the spirits up for those that are still in the home. Every day, there is “ring and run” (doorbell ditch) where one of their kids quietly sneaks up to the house with some handmade crafts, bubbles, or other toys, leaves them on the front porch, bangs on the door like crazy and takes off running. Our kids get a huge kick out of “Project Transplant” and have really appreciated the efforts of this family. The first day included a big poster that is now proudly displayed on the banister in the living room. (Yes, my son really does have green hair. His sisters had pink and blue hair until the pool washed it away… how can you tell them “no” when their mother runs around with bubblegum pink hair herself… SMH)