We’ve had a lot to process over the last month, mainly grief. We are grieving what we thought this season was going to look like (survival mode vs. restoration), grieving the impacts another SCT will have on our kids and grieving putting our life on hold again. The main feeling that has been absent is hope.

Yesterday I had the appointment with my hematology team to further discuss moving towards a second transplant. The medication regimen they’ve put me on has definitely kept me more stable (Blood transfusions are averaging every 10 days vs every 4) but as expected, it didn’t “fix anything”.

So what exactly happened? My body’s immune system was never sufficiently weak enough for my graft to fully take. The plan was to take me off immunosuppression to give my graft time to get stronger. What ended up happening was my immune system came back with a vengeance and kicked my donor out. This is a complication that happens in <5% of transplants.

Our main question to the team is “what will be different this time”. I hate to admit that we are more skeptical and jaded this time around. This is what we found out:

• My team selected a different donor this time. This donor is unrelated and is a 26 year old female. The team went into specifics about why they feel like she is my best possible match. This is a direct result from people volunteering to join the NMDP (be the match) registry. If you are one of the many people who have done that in the last year, thank you. Also please join me in saying a prayer of protection and gratitude to this selfless heroic woman.
• My conditioning treatment (what happens 5ish days before the transplant) will be different. It will be targeting weakening my immune system even further than last time and it will also include full body radiation.
• I will be staying home and Cullen (my husband) will be my primary caregiver. This isn’t a medical change but it’s a necessary one for my mental health. To agree to go through this process again I just flat out refused to be separated from my kids. We are being “smart” about it. The reason I stayed away last time was because of risk of infection. We will have strict infection rules in the house and we were able to secure a low budget condo 5 minutes from the house for my in-laws to stay. This will also be a place a sick child can go (or I can go).

More than anything, I left the meeting feeling a micro-ounce of hope. My friend pointed out “the size of a mustard seed.” It’s more than I’ve felt in 2 months and it’s all I need right now.

Prayer requests

• my new donor
• For anxieties to calm within both Cullen and myself
• Decision making for my medical team
• A swift transition to transplant (no insurance hiccups, evaluation appointments scheduled quickly, no donor delays)

I attended a women’s event at my church in January and the overwhelming message I walked away with is “your story isn’t over.” I want so badly to truly believe that.

Thank you for continuing to walk alongside our family and for being a part of my healing journey,

Danielle