8 August 2016
Arun Kumar, father of blood stem cell recipient Elsie, tells her story and highlights the importance of registering as a potential blood stem cell donor.
"Before Elsie had her donation, our situation was pretty bad. Elsie had relapsed only 6 weeks after finishing her treatment for acute myeloid leukaemia. We were told that her only hope of survival was a stem cell donation, although it was unlikely she would find one."
"Elsie was born with downs syndrome and a condition called TAM, which meant she was pre-disposed to leukaemia and had a 1 in 5 chance of it developing before she was 2. We were also told that it is a very treatable form of leukaemia with a 95% success rate. When Elsie was 18 months old she was one of the 1 in 5 and was diagnosed with leukaemia. Elsie was admitted to Great Ormond Street Hospital in Oct 2014 and the consultants confirmed that although she has leukaemia, it is very treatable, so we were very hopeful. She endured 4 rounds of chemotherapy which the doctors felt went really well and she was discharged in remission in mid-April. Six weeks later, our world collapsed when we were told Elsie had relapsed."
A slim chance
"The doctors did not give Elsie much time of making a recovery as she had relapsed so quickly. We had a slim chance, which was to have relapse chemotherapy. That was a lot stronger than anything she'd had before and we were told she may not survive. She needed to achieve a 2nd remission, but the doctors were not too hopeful she could because of the quick relapse. If by some miracle she achieved a 2nd remission, she would need a bone marrow transplant, so a donor would need to be found. This would likely prove to be difficult as Elsie has a mixed heritage and tissue-type is based on ancestry. We were told to seriously consider palliative care as the chances of successful treatment were so low. After much soul searching we decided to try the treatment option and Elsie started more chemotherapy."
Against the odds
"Against the odds, she achieved a 2nd remission and we had to find a donor and go down the stem cell donation route. A friend rang DKMS and the next day they came to see us at the hospital. They were brilliant from day one and organised a campaign to find a donor and just took over the whole process, allowing us to focus on Elsie. We were lucky enough to find an 8/10 donor and agreed to go ahead with the donation. Elsie had her transplant in October 2015 and is slowly recovering. All in all she has had 7 rounds of week-long chemotherapy, at least 30 general anaesthetics and at least 10 bone marrow aspirates (a needle is inserted into her hip to extract marrow). She has been through so much but still remains a happy loving child."
"DKMS helped us through the most difficult time in our lives. We can't thank them enough for all their help and support. They ran our campaign and got her story in local, national and global media. We were entering a scary and unknown time in our lives and they were there for us the whole way. The team at DKMS are brilliant, we are so lucky to have had their support."
"Elsie has had a chance at life because of the donation. When she relapsed we were told she wouldn't make it to Christmas. She had Christmas, Easter, her birthday, and is now going to start nursery in September. Without the donation, it is unlikely she would still be with us."
A message to others
"To anyone in need of a blood stem cell donation, we would say that we know it's a scary journey with lots of risks, but trust in your medical team and don't be afraid to ask questions. It's a really difficult time so don't be proud, accept support from anyone, be it a meal or an offer to do a load of laundry. Get as much support as possible so you can focus on the real issue. Make sure you look after yourselves, you need your strength and to stay healthy."