Sunny and Gurprit Bains live in Tipton, Birmingham, with their children Kiran and Gaurav. In December 2013, Gaurav had a stem cell transplant for a rare condition called monosomy 7 syndrome. Here, Sunny and Gurprit share their experience of waiting to hear about a donor.
In June 2013, we were told that our two-year-old son Gaurav would need a stem cell transplant to stop him developing an aggressive form of leukaemia. The doctor explained to us that we would need to find a matching donor.
Our first thoughts were that we would definitely find a donor within the family – we were convinced that Gaurav’s older sister Kiran would be a match. When the news came through that Kiran wasn’t a match, it hit us hard. We realised that this was not going to be straightforward.
The doctors then explained the facts and figures about finding a donor. As we are Asian, it would be more difficult to find a match for Gaurav. It was a really challenging time for the whole family.
We found it helpful to ask direct questions to the doctor and get honest answers. The answers might be scary but not knowing was terrifying.
What were Gaurav’s chances of finding a match? Was an 8/10 or 9/10 match ok? What would happen if they didn’t find a match? Would they keep us updated on the search? How would they let us know about any updates? What were Gaurav’s chances?
The doctor told us that if we didn’t find a better match, they would use stem cells from one of us as we were half matches for Gaurav. This was quite reassuring as we knew that at least there was another option.
We were very excited when a potential match was found in America and we told our family and friends – our hopes were high. But that person wasn’t able to donate, we weren’t told why. It was a huge blow for us and the search continued.
At some points the negatives seemed overwhelming. The thing that helped the most was being able to talk about what was happening with each other. It was difficult to talk about but being able to confide in each other really lessened our stress.
We shared our hopes and our worries. We were able to dream about best case scenarios and worry about worst case scenarios together.
During this time we contacted Anthony Nolan to help raise awareness and funds. Our child was facing a life-threatening illness but at least we were able to do something positive that could help another family out there. It also kept us busy – training for the marathon and helping recruit new donors gave us something to look forward to each day.
We set up a Facebook page to update people on Gaurav’s progress and were boosted by messages of love and support. It can be hard to post about your feelings on social media, but once things were out in the open, it felt easier to deal with.
In October 2013, we were told that another potential match has been found. It was fantastic news but we didn’t want to raise our hopes too much in case it fell through so we didn’t tell anyone until it was 100% certain.
Incredibly, this 10/10 match was confirmed. We couldn’t believe it, we felt so blessed. We still didn’t believe it was going to happen until we saw the stem cells with our own eyes.
We dealt with each stage as it came and tried not to think too far ahead – finding a donor, that person donating, the stem cells getting here, and the transplant working. Each stage had its own set of worries and it helped to take things one step at a time.
There were times when we thought we couldn't cope and were ready to give up. It was the love and support from friends, family, and Gaurav himself that gave us the hope and the fight we needed.
There was a day during the transplant when Gaurav had been uncomfortable and in pain all day. There was one moment where he gave us a cheeky smile and we said to each other, ‘That’s it. We’ve got to grab that smile and somehow make it outweigh all of the negatives. We’re going to stay positive and we’re going to get through this.’
Gaurav is now approaching his fourth birthday and we’re all doing well. We can now look forward to having a normal happy life together with Gaurav at home where he belongs.
If you’ve had similar experiences to Gurprit and Sunny, you might find it useful to read our Parent’s Guide to the Transplant Journey or connect with others on our transplant community.
For more content like this, sign up to our quarterly patients and families enewsletter.
If you’ve got questions or need support, please contact Anthony Nolan’s Patient Experience team on patientinfo@anthonynolan.org or call 0303 303 0303.