I know it has been quite a long time since we have posted an update about Caleb’s progress after coming home about six weeks ago. The kiddos, Caleb’s behavior, therapy, doctor’s appointments and the “medical regimen” are keeping us busy, despite the isolation! We know many of you have continued to pray and inquire about Caleb’s progress – thank you so much. We believe we wouldn’t be where we are (home sweet home) without you.

We are zeroing in on Day +100 post transplant, which is an important milestone toward recovery. On the medical front, Caleb has been able to remain stable at home under isolation without any hospital admissions or fevers, since we left the Ronald McDonald House suite. This is certainly a big win! We were trying to prepare ourselves for a potential admission shortly after coming home, so we are very pleased by this realization.

However, few precautions and routines have changed since discharge. Bone marrow transplants require a lot of wait and see…. and wait and see some more. We continue with several appointments a month at the BMT clinic at NWC in Columbus. Caleb remains at home in the house, with the exception of car rides to grocery pickup or the hospital, occasional dirt-free time in the yard or a walk with a mask, sun screen, hat and umbrella. He cannot be in any public place, including church. He sees in-home therapists three times a week, including Speech, Physical Therapy (PT) and Occupational Therapy (OT). Though we love his sweet, soft head, he is still mostly bald (cue the daily backward hat, which he finds and puts on himself). But the peach fuzz is starting to cover more of his head, and it’s dark rather than blonde. We continue on the same intensive medication schedule, with the re-addition of the Bactrim (third antibiotic, more general/broad spectrum coverage) that he now takes on the weekends again. Adding back the Bactrim basically removes the need to have a special appointment for monthly pentamadine infusions, so we seized the opportunity.

We also hope to fully wean Caleb of the Tacrolimus (immune suppressant) by November, but this is a slow process due to preventing GVHD (graft versus host disease) and other reactions. This medication likely continues to play some factor in Caleb’s frequent tiredness and irritability, but we are not sure to what extent. Once he is fully weaned from the Tacrolimus, he will also be able to stop taking magnesium supplements and Norvasc (for high blood pressure). He will continue to take all other medications, including the three antibiotics, until at least a year post transplant, which would be earliest next May.

Caleb had his “Day +100” appointment last Thursday (technically Day +91), where he had an EKG and Echocardiogram to check how the chemo may have affected his heart function. Relieved to report that these tests came back with no concerns on the cardiology front. Awesome. They also did some more involved chimerism tests (testing percentage of Caleb’s cell makeup that is from Colten) , the results of which we don’t have yet. His platelet, hemoglobin, white blood cell count and IGG (for IVIG infusions) levels have also remained at desirable levels throughout his outpatient check-ups- but the core B and T cells have yet to start growing in number just yet to provide a healthy immune system. Basically, his immune system is still severely compromised because his bone marrow still needs to start making the new, well functioning B and T cells that make all other immune cells. Colten’s cells are still working to take over the “camp,” but we hope to see some improvement in this area soon. (Hence, why we are required to continue with the same strict cleaning and isolation procedures as we did the day we came home.) It’s still early yet, and he won’t have a fully functioning immune system until year-end at the very earliest (potentially one year post transplant).

It has been a wonderful blessing to be home together again under the same roof, and we look back on our progress with gratitude. We have lived the “hospital lifestyle,” and it’s something we certainly don’t miss. Yet, there are many challenging behavioral “after effects” of the transplant, as well as some potential ICF related symptoms, that remain. Caleb is still very clingy, grumpy, tired, angry, fearful and struggling to sleep much of the time. He has his happy moments and his spirits have improved from the hospital, but he is suffering from medical PTSD-like symptoms, waking up at night and thinking he is in the hospital attached to a pump… or having panic/anxiety attacks at visits when he thinks they’re going to make him stay. His speech is also still fairly delayed, so he struggles more than the average two-year old to communicate…. this of course leads to constant frustration… in the form of screaming fits, banging his head against surfaces, slamming cabinets, throwing objects, hitting and stomping around.

The therapists also feel he may be struggling with heightened sensory sensitivities or preferences that he cannot express (common with young hospitalized children), which also manifests itself in the form of behavioral/anger issues. This is a very new concept for us, and we are just starting to explore ways to help improve/broaden his sensory input to give him a sense of calm and help him sleep better. We have a sleep evaluation scheduled at NWC in October, as we have been struggling with Caleb’s sleep for just about his entire life… and that was the earliest available. We have started a “sleep journal” in the interim to find patterns and help with the evaluation. Just an example of some of his sleep behaviors- leg rocking, fearful or angry loud screaming from what seems out of nowhere, smacking/kicking/pushing, hair yanking, banging his head against the headboard, and eye twitching, among other things. 

His BMT doctor feels that some of his transplant-related behavioral symptoms should have started to improve by day +91 (last apt), so she and our psychologist have referred us to their Child Development Center in Westerville to weed out any other potential problems we are missing. Unfortunately, there is not enough globally published data on ICF I patients, especially those who have had bone marrow transplants (probably could count the total number on your two hands), so Caleb is the “trailblazer” for the United States. We don’t know what his developmental delays will look like going forward- now or in a few years or for the rest of his life. We are thrilled to be correcting his immune system, but don’t really understand the full extent of this diagnosis. Just take each day as it comes is all we can do. A little over a week ago, Caleb also developed a random eye problem in which his right eye goes in and out of focus (out toward his ear). We are looking into that this week and next with ophthalmology appointments and have no idea the level of severity at this point.

With all of this extra attention and time spent with brother, you can imagine how Colten is handling it as a four-year-old. We have intentionally scheduled some special activities/sports that are just for him, and this seems to help a little. He struggles to allow Caleb to receive therapy without making a fuss or a lot of “pay attention to me” racket… and he still is exhibiting some insecurity symptoms when it comes to “being left” in another part of the house. We plan to put him back in preschool ASAP, which is hopefully set for November when Caleb will be off the immune suppressant.

More details to come… and thank you for reading!