Lots happening here over the last six weeks. Oliver has graduated from physical therapy and continues to do daily speech and occupational therapy. Physically he is 95% back to normal after his major neurological episode - he is walking and running and his fine motor skills continue to inch closer to normal. His speech is the slowest to return although we continue to see weekly progress. His slur is still very present but we are finding it easier and easier to understand him. Words are breaking through and we rarely need to ask him to repeat himself. The NG feeding tube came out in June and swallowing/chewing is much more controlled. He still has some weakness on his mouth’s right side but that hasn’t restricted his ability to eat most things and maintain his weight.

Two weeks ago UVA sent us to meet Stephen Hunger, a world expert in T Cell Leukemia at Children’s Hospital of Philadelphia (CHOP), and his bone marrow transplant team. Dr. Hunger did a thorough review of Oliver’s case and studied his many complications. He talked with us for more than two hours and reassured us that Oliver‘s cancer is still curable even with the limited drugs available to him and reassured us that bone marrow transplant is not needed at this time (transplant is a long, hard road and reserved as a last resort for kids with leukemia). Dr. Hunger, in collaboration with our care team at UVA, has develop a modified chemotherapy plan, eliminating all drugs that carry risk of neurotoxicity. That plan will carry us through the next 22 months and started last week on July 8. We’ll have two months of intense therapy and then, if all goes to plan, move to maintenance meds.

In addition to the chemotherapy plan, Dr. Hunger also requested a repeat bone marrow biopsy. Since Oliver has been under-treated the last four months while recovering neurologically, he wanted to be 100% positive there are no cancer cells hiding in his marrow. Two days ago we got the results of that biopsy back and are happy to report that Oliver remains in remission as there were NO CANCER CELLS DETECTED.

We continue to be amazed by Oliver‘s positive attitude and overall happy demeanor. He has energy, feels like playing most days, and his sweet, ornery smile makes us so thankful! He is still seeing his teacher 4 days a week and is catching up on his education and making strides to regain some of the cognitive function he lost.

We allowed Oliver to attend field day on the last day of school and in June, we also got to sneak away for a little beach time with family and friends. For the first time since Oliver‘s diagnosis we were given permission to be farther away from our UVA doctors and the safety net they provide for us. (Don’t worry though, we had a plan just in case anything happened while we were away!) It felt great to have a bit of normalcy and fun after such a long period of worry and fear. It’s hard to believe that a month from now marks one year since cancer consumed our world.

Maybe our journey has finally taken a positive turn….. ❤️🤞