Dear Sharmin/Bostonian,
Thank you all for being part of and sharing my joy. Indeed the happiness grows manifold and sorrows halve when shared. Amen for your wishes and wish lots of love luck and happiness to all friends here.
The cost of treatment was 70K USD last year excluding the cord blood cost. The actual cost of cord blood was 24k usd. The cost has increased now and the treatment cost is close to 90k USD now excluding cord blood cost.
Our cord was sourced from US Stemcyte and it was a partial 4/6 match. As per Dr. Jaing there is no difference in result between partial or full match in CBT.
The total stay in Taiwan was 5 months out of which three months were spent in hospital itself. The total hospitalisation duration for daughter was 94 days and it took agonising 24 days for cord blood to engraft. The usual time is 14 - 25 days for engraftment. I would not say my daughter had severe complication but yes she did get skin GVHD and fever post transplant which is natural to expect. Infact, Dr. Jaing wanted the GVHD to happen as it heralds engraftment. She used to complain of stomach ache after chemo but only for a week. She did not have loose motion etc. At no point in time we felt that Dr. Jaing was not in control and he would pre-empt almost all of the problems. Her fever post transplant persisted for more than a month but she would get fever on days when steroids were not administered. We did not have much complication once we were out of hospital barring one instance of fever couple of months back which happened to be a viral fever and had nothing to do with BMT, though it did give us a scare.
We took enormous precaution once we brought her home especially in India. We kept her isolated as much as possible, she did not see the outside world for almost 9-10 months, we sanitised our house twice a week, did not allow friends and neighbour, including our family member, to visit us. We would not even touch her without sanitising our hands, Installed HEPA air filter at home etc..
If I compare CBT and BMT, I would say CBT possibly has lesser complication as GVHD is limited to skin that looks like mild rashes which goes away in a 7-10 days. However, the engraftment takes longer time in CBT compared to BMT.
Along with my daughter, another Indian girl received transplant for Thalassemia in Taiwan at the same time, She is also back in India after successful transplant. Couple of Indian patients are lined up for transplant in May this year and my best wishes are with them.
Today it is almost 14 months post transplant for my daughter and we are looking forward to sending her to school from July onwards.
Regards,
Himanshu