[Day +140] The Fog
This post is incredibly delayed.
Please know that we want to share our journey, but this time around, we needed some time to process. There are days it feels as though we are walking through fog, moving slowly and stumbling, rubbing our eyes and asking, “is this really us?” A quick glance in a mirror brings it back with sharp certainty: it is us, even if we feel foreign to ourselves. We’ve been putting one foot in front of the other, but some days, the clouds are so heavy…
Before Carter’s transplant, we met with our doctor for what is called an informed consent meeting: many topics have to be discussed, more scary “what ifs” than we can count, and for most of it, I wanted to cover my eyes and ears. The fog wasn’t strong enough to make it easy, but it filled the edges of our minds enough that we were able to physically sign the consent, knowing any of these possibilities could become a reality for our child.
Within this consent is a section regarding Epstein Barr Virus (EBV). Most may immediately think “Mono,” which is correct; Mono comes from EBV. However, in transplant, the concern for EBV is slightly different— once a person has EBV, they always have it. The body typically fights the symptoms, and then the virus goes dormant. It’s always there, but a healthy immune system can generally keep it at bay. In a transplant patient who is immune compromised and taking immune suppressants, this virus can reemerge without much fight from an immune system. It can come back and come back in a bad way.
We believe Carter developed EBV via one of his many blood transfusions throughout this journey. It was also present in our donor. We knew Carter was at risk for reemergence and the possibility of other conditions associated with it. It was part of the consent I loosely listened to through the fog, finding these possibilities terrifying at worst and unfathomable at best. We were silently praying we wouldn’t see this complication.
Unfortunately, we did.
On December 13th, it was confirmed that Carter’s EBV values were high. He’d had symptoms for the previous 11 days that were perplexing to all. He seemed to have a bug, but antibiotics weren’t working. EBV was undetected on the most recently run tests. But then, his symptoms came and came fast. The lymph nodes in his neck looked like golf balls.
Carter was admitted back to the BMT unit for fever. The in-depth testing quickly began. Before we knew it, we were headed for a PET scan. Those consent words raced through my head like rapid fire, sharpening as they broke through the fog and flew into focus.
It was confirmed on December 16th that Carter has Post-transplant lymphoproliferative disease (PTLD). More specifically: Diffuse Large B Cell Lymphoma.
The C word.
A word we have been running from for 18 months.
This lymphoma is a direct complication from EBV due to his lack of immune system. This lymphoma came on fast and furious.
We faced yet another consent conversation and more “what ifs.” This time, I could hardly listen. The envelope of fog wasn’t protectively dulling the edges; it was so low and so thick I could barely move through it.
The silver lining to this cloud– we caught it fast. This went from zero to full out in 12 days. It was contained to only his neck and clavicle.
We began our new battle on December 17th, which marked day one of cycle one of his new chemotherapy treatment regimen. Carter handled it with the same strength he has shown us throughout this long journey. He fought through the discomfort from the chemotherapy, and we were discharged in time to be home for Christmas.
Unfortunately, Carter returned to the hospital on December 29th with a fever. The chemo has caused him to become red blood cell transfusion-dependent (again), and low hemoglobin triggers fever for him. When we arrived at the hospital, this was confirmed as his hemoglobin was critically low. During this stay, we were able to stay on schedule with his chemotherapy regimen. We did not make it home to celebrate the new year as a family as we’d hoped, though.
Carter's counts rebounded post-cycle one, and we began day one of cycle two of chemotherapy on January 3rd. The fog we are traveling through is still heavy, but we feel prepared this time. We now know what to anticipate for the next while and are able to move a bit more smoothly because of that. It feels a bit ‘easier’ this time, although the pain we physically feel watching the medications infuse into our child will never go away.
We recently received the results of Carter’s follow-up/post-cycle one PET scan. Our doctor said we are seeing “a perfect response.”
Finally, after a month of heavy darkness, we see a light. Although dim, there is light that these treatments are working for his lymphoma. Carter will have one more cycle after this one — three 21-day cycles in total.
I know what you’re asking now: "Has his transplant failed?” The answer is no. His graft is incredibly strong! His stem cells have been joining us in this fight and are overachieving for us (again). Please join us in praying they continue to hold firm and rebuild after each of Carter’s chemotherapy cycles. At this point, we aren’t sure of the impact the lymphoma will have on his transplant recovery. Only time will tell.
To say we are scared is an understatement. To say we are thankful is an understatement. To say we have received incredible support is also an understatement.
We could not be more thankful for our medical team, who are more like family at this point. They have diagnosed, solved, and walked with us each step of this journey. They have given us a hand to hold and a path to walk when it seemed too hard to get through. We feel most comfortable during our days spent with them.
To you, reader- our family, friends, and others who also walk this with us daily- we give you many thanks for your continued support, love, and prayers. We value you and your outreach more than you will know. It is hard to verbally express how much you mean to us and the strength you provide.
The messages, emails, cards, and surprise packages received from friends and acquaintances near and far help to keep us moving each day. The words of encouragement always seem to arrive on the days we need them most. Thank you to those who continue to support and pray for us from afar. We see and feel you.
Though we did not begin 2023 as we’d hoped, we feel that this year can and will turn around for us. Our faith is as strong as ever. It would be untrue to say it hasn’t been tested and that we didn’t feel the “why us?” pity again. However, we have chosen not to go that way. This year, we will continue our fight and try to turn our pain into our word for 2023: purpose.
God has a purpose for this and us. We will continue to push through as we find what that purpose is. We will continue working on Carter’s Be the Match campaign, which has identified at least ten possible donor candidates to date. For now, it is our purpose to help others.
If you or someone you know has been dealt a hand similar to ours, please get in touch with us. We want to help.
And if you know anyone faced with signing one of the consents I mentioned, please check on them. Offer a shoulder. Offer a smile. Offer words of encouragement. I promise you; they need any help you can offer to get them through the fog and into the light.