Delays and Disappointments

An update is long overdue, but each week as I have gone to write something, we were dealt one blow after another, and sharing information and my thoughts was pushed to the back burner.

Since finishing his last round of chemo mid-February, Caden’s providers wanted to do a bone marrow biopsy to check for disease, and then begin his fourth round of chemo. Our first attempt at this was the week of 3/10, but Caden’s counts (hemoglobin, platelets, and ANC, to name a few) were too low. The biopsy was moved to 3/17, with chemo to start a few days later. The next week though, his counts hadn’t budged. His doctors said this was not a problem, and we pushed everything back another week, to 3/24. On the 24th we arrived at the hospital for the biopsy, only to have them run a rapid respiratory test on Caden and find out he had the flu. There would be no biopsy, and no chemo could happen that week. Delayed once again. Finally, on 3/31 we were able to do the biopsy, but when we came back three days later to start chemo, we were disappointed to discover his counts STILL had not recovered, and the doctors were without explanation. The only thing to do was push back the start of chemo yet another week, to 4/11. This past Thursday, labs were taken to determine if he would be good to go…and he wasn’t. His counts remained virtually unchanged, and he received a blood transfusion yesterday afternoon. Testing is scheduled for early next week to see if there is an infection in the bone marrow that is preventing his counts from recovering, and keeping us in this holding pattern.

We also got some tough news this week. Unfortunately, results from the biopsy on 3/31 detected a small amount of leukemia again.

Just like that, Caden is no longer in remission.

My husband and I had a call with three of his doctors this week to discuss next steps. Their perspective is that the treatment he’s been receiving is controlling the leukemia, but it is not destroying it. The plan at this time is to do one more round like we’ve been doing (5 days of IV chemo and 14 days of the chemo pill Venetoclax), then check for disease with a bone marrow biopsy. If they still detect leukemia at that time, most likely we will be changing to more intensive treatment, which would include inpatient chemotherapy and a second bone marrow transplant with a different donor.

Even writing those words makes me physically ill.

To think of Caden going through everything all over again - living at the hospital for months, hair loss, constant nausea, missing out on school, friends, extracurricular activities - LIFE - it absolutely breaks my heart. To think about moving back to Seattle and having our family separated, is something I never wanted to do again. But I also know, if the doctors think that is the best route to beat this horrible disease, then we will pull together as a family, and we will do what we have to do.

When I got the phone call in October telling me Caden had relapsed, I felt a flood of panic. I went outside to our barn, and I just started screaming. Since getting the disappointing update this week, I have found myself waking up in the night, my heart racing. I can’t remember my dreams, only that I have a distinct sense I am being chased. Chased by all of the things I am afraid of, the things I had so hoped were forever in our past. Cancer is the scariest thing I have ever known.

We are calling on Caden’s prayer warriors to pray for these specific things:

- That Caden’s counts will finally recover in the next few days so he can begin chemo around 4/17-4/18.

- During the next few weeks that God would COMMAND Jacob’s cells in Caden’s bone marrow to attack and destroy the sick cells.

- That the next time they check for leukemia, Caden will be in remission, and stay in remission.

The next couple of months are important and the way Caden’s body responds to treatment in the upcoming round will dictate where we go from here. Ultimately we know God is in control and he has a plan, but we are humbly asking that if there is a way to avoid high dose chemo, family separation, and a second transplant, that he would make it so. Thank you for praying with us.

“Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff—they comfort me." Psalm 23:4