16 weeks... 112 days...

16 weeks down this road called leukemia. 112 days away from home. Some of those days have been harder than others. Last week Eli finished the second phase of treatment and was cleared to spend a few days away from the hospital and head to my parent’s house. He and Dana got a much needed change of scenery and some family time. 

Monday Eli went in for a biopsy that would kick off the next phase of treatment. Unfortunately his bloodwork came back indicating he needed to be admitted and treatment needed to wait for him to bounce back. This was a discouraging setback for us and has causes some level of stress this week. Dana had the sense that the ward was really busy this week, just from the number of occupied room and the staff just being busier. This afternoon she finally had a chance to talk with Eli’s primary oncologist. It was a good talk and basically there are a number of more complex cases in the ward right now and Eli is pretty much stable so requires less attention. It’s a sobering reminder there are kids in much tougher shape than Eli.

The drop in his counts are within the window that such a drop is expected after his last round of chemo. Kids with Down Syndrome can be quite sensitive to the treatments, which is what we’re seeing. The upside of that is it is also an indicator that their leukemia is sensitive to the treatments.  So we’re seeing his body having a harder time but the leukemia cells are having a harder time. The treatments are also doing a number on his tastes and appetite and it’s getting really hard to get him to eat. 

Because Eli has Down Syndrome the doctors are monitoring him very closely and he’s spending more time in hospital than a typical kid would. This is because any child who gets sick during chemotherapy is at risk and requires immediate medical aid but kids with DS are just more vulnerable so they err on the side of caution and keep him in more. 

Going into the days ahead, we’re just waiting for counts to recover. Once they do he’ll have his biopsy and then should start the next round of treatment. The next round includes a 28 day 24/7 infusion which is administered via a carry around pump and he gets the bag swapped out every three days. This will allow for some more breaks with fewer clinic visits.  We also got approved for some respite support through the Blue Jays Care Foundation so that will be starting soon. Once this first 28 day round is done there is good chance they will get sent home to PG for a break. We’re really hoping for this so we can all be home together. 

How are we doing? We’re tired. We’re all tired. We’re taking things a day at a time but it’s definitely wearing. We look forward to being able to be together again and when we are together we need time together.  With school coming to an end and my slate of contract work changing our and growing we’re keeping busy and will have to continue to flex but also have more opportunities to for visits. 

We continue to be filled with gratitude for all the love and support we’ve received through this journey, it encourages us and eases our load. 

Pray for us all to have strength of endurance, for Eli’s counts, for his appetite and just to stay on course. For us to have some good family time together when we can. We know we’re cared for and we have faith and trust for the road ahead.