Pre-B ALL (High Risk) Deletion p16, Standard Relapse, BMT #2, Day +36 , 225 days since relapse. Week 14 in BMT.
Bella has had a pretty uneventful week (which is what we want!) Last week, we were informed that Bella needed some special cells as she still had the CMV (Cytomegalovirus) in her bloodstream. Rachel told me she considered Bella at ‘high risk’ due to her overall medical background. If we were discharged with a new bone marrow factory, things could go downhill quickly. The CMV carries pneumonia -like symptoms. So when Dr Rachel asked for my permission to go ahead with the procedure, it was a no brainer. I asked her, “Where do I sign?!”
The lymphocytes would come from an unrelated donor whose cells had been frozen from a previous donation. Bella’s donor was sourced from the Australian registry with 2/10 HLA (Human Leukocyte Antigen ) bone marrow match for Bella.
The infusion occurred last Friday 27/10/17. It built to an anticlimax as we waited for the pathology person to march down the BMT ward with the cooler box. We could hear him passing the instructions onto the nurses. “Please do it quickly. They have now been thawed. 1.7ml.”
So the cells went in which will hopefully provide Bella with antibodies to protect her from the CMV for the next 3-4 years. This one procedure cost 10K! Hard to imagine how others around the world & even in Australia who may not be able to afford medical assistance, pay for medical treatment out of their own pocket.
Through our journey I have met a beautiful young family in this very situation. Their mother is on a full study scholarship. They have paid private medical insurance. Unfortunately, it doesn’t cover all of the expenses. Approximately 30-40%. Oncology care when you break it down can run into $500K or more. No medicare card = no coverage. Similarly, some rarer cancers are NOT covered under Medicare, so families need to foot the bill.
Bella is doing so much better as we progress through our journey. Discharge will occur in less than 1 week! We are beyond excited. The past few weeks are becoming arduous though. Bella’s overall health is improving, so there is less to worry about which means the days are long! Thank you to my beautiful siblings Elaine, Huong & the RCH therapy team who help to keep Bella preoccupied during the day whilst I prepare our home in anticipation of Bella’s home-coming!! It will be momentous for our Bella & our family. Time to go home!!!
Her counts do fluctuate daily, but nothing for me to be concerned about. Some medications Bella takes can suppress her marrow. Good news is, Bella’s bloods indicate her marrow is healthy & is producing all of the important cells needed by an individual. No blood products since she engrafted! Woot! Woot!
A bone marrow transplant to me is like building an entire FACTORY from ground up. The all important STEM CELLS are transfused into the patient. They need to work really hard to engraft & connect with a patient’s body, the building blocks or “machinery” to get the production line running. I cannot begin to imagine the complexity at that cellular level (genetics, GvHD etc). Every now & then, the medical team can help this bone marrow factory by giving GCSF to help in the production of healthy cells to ensure we DON’T lose the ENGRAFTMENT. This can happen! Hence we will stay until next Wed (so Bella can have 1 more f ose of GCSF).
Team Bella have endured much during the past 7 months & counting. But we have also accomplished much. Through Bella’s cancer journey, we have been able to share our story with you all. By doing so, we have raised awareness. People have given blood more regularly & some became new blood donors! (http://www.donateblood.com.au) We have encouraged many others to register on the Australian Bone Marrow Donor Registry (http://www.abmdr.org.au) & have fundraised & completed Bella’s backyard but Team Bella also went further on raise money for several charities. These amazing organizations have supported us throughout our cancer journey including Children’s Cancer Foundation , Challenge, Camp Quality Victoria & the Starlight Children’s Foundation.
Most importantly, we couldn’t have done this without the ENORMOUS help from our tribe. I stand so proud to say that every single person who sent us a prayer, positive energy, folded a crane, purchased Team Bella merchandise, helped even by becoming AWARE. Thank you from the bottom of my family’s heart. We feel so much love & that is what has MOTIVATED us to get through an exceptionally difficult year.
I hope we have climbed the ‘peak’ of our journey, passing through the dangerous crevasses that at times, wanted to swallow us whole. But we persevered & giving up was NEVER an option.
Team Bella: Onwards & upwards.