February 4, 2026
The last few days have been a whirlwind. Since last Tuesday, Ollie has done well at home and has remained playful and in good spirits. We spent our longest day ever at clinic yesterday (we were waiting to see if he needed blood products before his procedure and one of the machines they needed to analyze the blood was broken). He couldn’t eat or drink until noon and he handles that incredibly well. The intrathecal chemo is not very hard on his body, but the sedation often is. It makes him feel irritable, groggy, and just overall off for the rest of the day.
There is a phase 1 clinical trial out of Seattle Children’s Hospital that has been running for about a year. Phase 1 means that while the concept is exciting, it is a brand new and experimental treatment. It is designed for testing safety and side effects rather than directly assessing efficacy (although, they obviously hope to show efficacy as well). It is a CAR T-cell therapy, which has been a huge breakthrough in other types of cancers — for more information about CAR T-cell therapy watch here.
Next week, Oliver will be getting another bone marrow biopsy during his weekly intrathecal chemo so that we can see how much disease is still in his body. In order to join the trial, we have to show that the cancer is still present after a round of chemotherapy has been given. If we are given medical and financial approval to enter the trial, he has to be off of chemo for two weeks. Then we will fly to Seattle for about 4 days where they will collect T-cells from his body. We will then fly home for 2 weeks while they manufacture and verify the CAR T-cells. Then, we are planning to fly our whole family out to Seattle for about 5-6 weeks while he starts therapy. We will do a repeat biopsy, 4 days of chemo, a 2-day break, and then the infusion of the T-cells. We will stay in the hospital about 2–3 weeks as they monitor and watch for symptoms and then spend another 2–3 weeks in Seattle with out-patient clinic visits. Then, we will head home to begin another bone marrow transplant at UNC and do our long-term follow-up locally.
It is very overwhelming just typing this out. So many flights and details and tests. So many risks and scary potential side effects. He will be the fifth child to join this trial and because it started last year, we don’t have long-term data. But, this is really our only option. We feel strongly that we need to do everything we can before going into another transplant, and doing what we did last year and changing a donor from 10/10 to 9/10 didn’t feel like it was going to be enough. Even though we couldn’t detect these leukemia cells after two rounds of chemo last year, they were there. So although this is going to be quite complicated, we will do whatever it takes to get him into a lasting remission.
We are looking at how to fly Oliver to Seattle and back without an infection (he has a central line and no immune system and will continue to not have one) and trying to figure out housing. We will be aiming to stay as close to Seattle Children’s Hospital (4800 Sand Point Way NE, Seattle, WA 98105) as possible. If you have any flight or housing connections that you think could help us, would you email me at jessica.ann.morrel@gmail.com?
Will you please pray:
That we will figure out all the logistics (housing, flights, school, work, etc.) involved in bringing our family of 5 to the literal other side of the country for an extended amount of time
That none of us would get sick and that Oliver would not get a fever
That this would be a clinical trial that is successful for Oliver and all the other kids with this type of cancer. That his cancer will never come back. We are praying that this will be a scientific breakthrough that gives hope and a good prognosis for future kids with AMKL.
That God would give all of us, but especially Maddie and Liam, strength to get through each day. That we would all feel His presence in a way we never have before.
