Hi, I’m new here but my history with blood disorders and cancer is long and involved.
In 2001, my 17 year old sister was diagnosed with Aplastic Anaemia which is an autoimmune disease with causes bone marrow failure. She spent many months in and out of hospital with multiple remissions and relapses. She spent her 18 and 21st birthdays in hospital and lost pretty much all of her friends.
In 2009, I donated bone marrow to her, and although it didn’t graft, it put her into remission for many years.
In 2015, just before her wedding, she was told her AA had morphed into Myelodysplastic Syndrome. This time, I donated my stems cells to her and she went into remission again, and we were convinced she has been “cured”. We celebrated her rebirthday every year and we became incredibly close as we were “Bone Marrow Buddies”.
The amazing doctors at Ruth Myles Unit in St. George’s Hospital, Tooting kept an eye on her bloods all that time, which was reassuring, but in late 2023, they saw her counts were drifting down. We didn’t think too much of it, and started planning for her 40th birthday. A trip to Ireland to see our cousins and just have a big celebration. In early 2024, on my birthday (I now hate my birthday), we were told the Myelodysplastic syndrome (MDS) had mutated into Acute Myeloid Leukaemia and she had to go into hospital immediately for transfusions and treatment.
So our plans for her birthday were cancelled. She spent yet another milestone birthday in hospital. We talked about all the places we would travel to once she had recovered from another Stem cell transplant. This time, it wouldn’t be me donating. I know it’s irrational, but I feel so guilty that I couldn’t help this time, and guilty that my stem cells couldn’t save her from Acute myeloid leukaemia (AML).
She had the Stem cell transplant in July 2024; everything grafted and the doctors were very pleased with her progress. In December however, all her bloods started to go wonky again, and we were told she had haemolysis. She was given treatment, but her bloods continued to plummet. In February of this year, we were told she had relapsed, and they could do nothing else for her. 4 days later, it was her birthday. She is only 41.
She is now on chemotherapy injections to keep the cancer cells at bay, and we have no idea how long this will last.
She is exhausted all the time. Can hardly walk 10 steps to the bathroom without feeling like she is going to pass out. It makes me so heartbroken to see how fast she has deteriorated.
I am really struggling with not knowing how long we have left with each other. I am already grieving for someone who is still alive; she is still messaging me everyday, making me giggle and sending silly reels on Instagram.
I guess I just need to vent. I’ve done research and have discovered that 1 in 3 people diagnosed with AA will go down the exact same path as my sister. It’s an uncommon, but well known (in the medical field) disease progression. I’m just angry we were never told it was even a possibility. Angry that that’s why the doctors monitored here for all those years - they anticipated this could happen but didn’t warn us. Angry that my beautiful sister has been dealt such a cr*p hand in life, and that she will be gone so soon.
I don’t know what I need. I just feel lost.