June Update

Dear Friends,

Thank you for praying in light of Liam’s recent hospitalization. He spent one week in the hospital recovering from pancreatitis, and then one week in the outpatient oncology clinic for chemo infusions. This was our first experience traveling to Seattle Children’s Hospital since we transferred Liam’s care from Mary Bridge. While we don’t love the long drive, we are so glad that we made this decision. Seattle Children’s Hospital is a very large research hospital, and they’ve definitely won us over. They go the extra mile in every area, and we appreciate their confidence in treating rare cases like Liam’s. 

As Ben shared in our last blog post, Liam’s pancreatitis was caused by his daily oral chemo regimen. This is a rare side effect, but can be regulated. They are starting him on a new medication to accompany the chemo which will target the leukemia and shift the toxicity away from the pancreas. Unfortunately, this new medication also drops blood counts (and, therefore, his immune system) so he needs labs drawn every week to keep an eye on his already weak immune system and to determine if he will need any blood transfusions. This past week, his blood counts tanked after the chemo infusions he received last week, so he was not able to restart oral chemo until this evening. Delays like this always make us nervous. He has had many of them over the past year, and he needs the chemo consistently to remain in remission. 

The other news that Ben shared last week was that Seattle had taken Liam’s original bone marrow sample from when he was first diagnosed and studied it in more detail. They discovered two rare genetic abnormalities that could indicate a higher chance of relapse. Our oncologist discussed the possibility of starting Liam on a new medication that could help prevent that, but it unfortunately also drops blood counts. She doesn’t like the idea of him being on chemo and two other drugs that drop blood counts, because he can’t receive treatment if his counts are constantly bottoming out. Currently, the plan is to see how Liam tolerates the first new medication that will keep his pancreas healthy. If he is able to maintain good blood counts, then she may add on the relapse prevention drug as well. 

Lastly, Liam started a new oral antifungal drug. So far he has tolerated it well, and if he continues to do so, the doctor plans to switch his Hickman line out for a port in the next couple of months! That would mean that he could bathe, swim, play more easily, and move around more freely. We wouldn’t have to access it every day, and he would be less likely to get infections. Please pray that it continues to go well and that his fungal infection will start to heal!

Thank you for continuing to pray for us on this long journey. There are so many ups and downs, so many moments of grief, moments of regaining perspective. We often find ourselves emotionally weary as we continue to walk the cancer path. Life with a chronically ill child is tumultuous and unpredictable. Please pray that Liam would have an uneventful summer, full of joy, stability, and healing.