Coins for Carly Update July 2022 July 13, 2022
It has been almost a full month since the last update and it has been eventful and full of challenges. Much of the time has been spent in the hospital. Carlene was also diagnosed with covid while she was inpatient and had another surgery to have her PICC line replaced due to a leak. She finally completed her 28-day antibiotic regimen and completed her second cycle of chemotherapy.
The primary neuro-oncology team presented the final treatment schedule and we learned that the complete protocol requires us to be in New York until sometime in November. Originally, we were given the authorization to potentially visit home in Jamaica at the end of July. However, with all the complications including infections, Covid, broken central lines, and necessary, we have determined that a visit home is not in Carlene’s best interest.
We are faced with the reality that we must stay here in New York until the full protocol is finished. There are too many risks of having complications while traveling. This is devastating news for Carlene’s siblings and father as our family has not been together since late April. To further complicate matters, Carlene’s father is unable to obtain an emergency medical visa to visit her in the United States while she is in treatment.
These new developments further complicate matters as we are still in need of permanent housing for the duration of our stay, which is now substantially longer than originally expected. We are forever grateful to the Coins for Carly campaign's supporters who have helped us get this far. It is because of your support and generosity that Carlene can get the best care possible to help her survive this stage 4 cancer diagnosis.
The following is the remainder of the treatment schedule, barring no more severe complications:
July 14 – Vincristine (Chemotherapy Infusion) and possible blood/platelet transfusion
July 15 – Bone Marrow aspiration and biopsy
July 18 – Bone Scan with Nuclear Medicine and follow up with neuro-oncology team
July 19 – MRI Scan and meeting to discuss scan results
July 28 – Cycle 3 – Chemotherapy protocol
-Stem Cell Harvest from Bone Marrow – TBD
August 4–24 - more tests, mid-cycle vincristine transfusions, hopefully, no complications and delays
August 25 – Cycle 4 – Chemotherapy protocol
September 5-21 – more tests (MRI, bone scan, bone marrow biopsy), meetings with the transplant team, and a large dose of chemotherapy to wipe out bone marrow and immune system to prepare for transplant. Hopefully no more complications
September 22 – admission for stem cell transplant – 30 days inpatient in hospital for monitoring and prevention of transplant rejection, HOPEFULLY, NO COMPLICATIONS!
After 30 days in the hospital post-transplant, the discharge plan depends on how Carlene responds to the transplant. Once she is discharged from the hospital, she will be required to be in protective isolation for a minimum of 100 days because she will have no immune system and will be very susceptible to infection or other complications.
Depending on her response to the transplant, we MAY be able to spend the protective isolation time back home in Jamaica. We are really hoping and praying for this because otherwise, we will have to stay here in New York. That would mean it would be almost a calendar year for us to be away from home and our family.
We have come a long way, but we have a very long way to go.
Thank you for your continued support.