Last week Abbigail went through more scans and procedures, including a bone biopsy to quantify the recent findings by radiology that suggested further metastasis to her pelvis marrow.
The pathology of this biopsy came back after a painstakingly 7 days of waiting and they believe that there is no evidence of disease within the samples they tested. Her bone marrow aspirates and trephines clear, MIBG showed no uptake, however her bone scan showed abnormal uptake and her MRI clearly shows abnormalities within the questionable area. You might say it’s good news about the biopsy, but I still can’t bring myself to equate questionable evidence of disease, within a body already known to show new disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good. I can’t help but wonder and worry while I am trying to be grateful because it was clearly stated by radiology that he could not be truly confident in that he retrieved the biopsy samples from the area in question. It was also clearly defined in the pathology report that within the 5 samples studied, only 20% was bone matter and that leaves me nervous and anxious that we are celebrating something irrelevant, but I will chose faith and hope today and chose to be leave that this disease will no longer inhabit my precious girl’s body.
The fact remains though, that this new activity found within her pelvis on several radiological and nuclear scans could potentially affect her eligibility for transplant, never mind what that actually means to have new inoperable lesions in her tiny body. So with hope in our hearts we will push through the next steps in healing and chose only to worry if just cause is presented. We are hoping to have new imaging done in a few weeks, before actual ablation and transplant, to see if the area in question has changed.
After Abbigail’s biopsy, Matthew and I took a quick trip to Toronto to meet with her new Bone Marrow Transplant doctor from SickKids hospital in hopes of securing a date in the immanent future to begin the transplant process and get her chemo underway. This hopeful procedure will bring us to Toronto for numerous months, away from family, friends, work and the comfort of our own home and CHEO, however it may bring us hope, and a new life we never thought possible again!
Although transplant hasn’t yet been scheduled (day 0) for various logistical reasons and due to the complicated case Abbigail is, we have started the lengthy process leading up to Day 0; Abbigail’s New Beginning and Brave Journey to Healing! Monday we will check into the Ronald McDonald House in Ottawa for a quiet family night together before Abbigail is admitted to CHEO the next morning to begin a week of chemotherapy. I will stay there with her as always, hold her when she’s too weak to sit up and carry her when she can’t walk. I will cuddle her and rub her belly when she’s throwing up and nauseous. There’s nothing I wouldn’t do to take her place through these difficult days of treatment; to take away her bone pain from the stem cell stimulants, the nausea from the poisonous life saving treatment, and so many more of the acute and long term side effects she will experience over the next weeks, next months and for many years after.
Abbigail is a firecracker, and she continues to battle through it all with joy, love and bravery. We can’t help but follow her lead. She has grown up so much over the last two and a half years and we look forward to watching her continue to grow and become the girl we always knew she was!
As we travel for treatment, spend countless months away from home, and hold Abbigail’s hand through the most difficult months of her life, please follow for frequent updates as each day will have the potential to change her life. Stem Cell Transplant was not a quick and light decision, it has been over a year to get here. You see, Abbigail will be the second child to go through a transplant of this type for OMS in Canada and third in North America and it currently represents a 50/50 chance for her remission. Her protocol has been carefully mapped out with chemos, steroids, immunosuppressants and numerous immune altering drugs specifically to target OMS and has also been tweaked further to target Abbigail’s stubborn and rare neuroblastoma presentation as an OMS child. Stem Cell Transplant has the potential to be life saving but still holds significant risks for morbidity in many cases and even mortality in as high as 5% of children. This was by far the toughest decision we’ve made to date and although we know there is no cure for OMS, and it could return several times within her lifetime, we have high hopes that this finally treatment will bring her to a better quality of life and allow her to experience more as any other child would.
Your support and prayers are appreciated and truly make a hard day or long night slightly more bearable knowing we are not alone throughout this journey. Thank you from the bottom of our hearts.