Parents of Children Cured of SCD & Leukemia Share Tips on Coping With The BMT Process
By Titi Aladei
It was a reunion of sorts when BMT Specialist Dr. Kharya Gaurav, of Apollo Hospital, India visited Nigeria and rallied round his patients for a seminar/get-together in Abuja and Lagos. The first meeting took place in Abuja’s Fraser Suites while the second took place at Radisson Hotel, GRA, Ikeja; the attendees were parents of children who underwent BMT for SCD and leukemia. Others looking to transact BMT for their wards were there as well, emboldened and encouraged by the success stories they were going to hear.
The stories were stories of success, but the process was unenviable, to say the least. If you have the means and are thinking of BMT for your ward, don’t overlook these tips from those who have been there:
Take Extra Funds With You:
You may have received your bill for X amount in dollars. But be prepared to spend up to twice more! Take extra funds with you – unplanned medical needs are sure to arise. If you don’t have twice the amount you’re billed, take up to 50% extra cash with you. You won’t know you’re in for a money-gulping odyssey until you’re on your journey and there’s no turning back!
Brace up For an Emotional Roller-Coaster:
‘I have occasionally felt like hitting and yelling at or wringing the doctor’s neck!’ says a parent, recalling the days of frustration elicited by her child’s initial poor response to treatment. Some parents actually harass the BMT team who, fortunately remain calm, knowing from experience, that it’s a phase most care-givers go through. ‘Dr. Guarav’s calmness infuriates me to high heavens!’, says another parent.
Take Local Foods Along With You:
Indian cuisine is not so bad, but neither you nor your child is accustomed to it. As much as you can, take foods the child is used to with you to India. Some children get turned off by foreign diet at a time they need all the nourishment they can get pre-BMT. Will you be able to keep down your food when the child you took to India to get a cure turns away from food he/she is not used to?
Steel Yourself For Scary Moments:
Mrs. Ngozi Odigbo’s daughter developed the BK Virus in the process of BMT. The BK Virus is one of those opportunistic viruses lying in wait for transplant recipients to undermine the whole process. Infections are common and have to be battled. Graft Versus Host Disease (GVHD) is the scariest of them all. Memories of those moments will haunt you for a long time.
Prepare To Be Physically, Mentally and Financially-Drained:
Watching your child go through the very process that would rid them of SCD or leukemia or other inherited blood disorder is one of the most body-draining exercise of all time, according to parents who have been there. Moments of doubts and regret, moments of angst and self-blame, cliff-hanging moments when you’re unsure the nickel would drop into place, metaphorically speaking, will be many. At the same time, you are also being financially- suctioned to the point of begging from friends and relations and fellow transplant families!
‘I sold property to get us to India,’ recalls another parent, ‘yet it was not nearly enough.’
Take The Risk, It’s Worth The Freedom:
Although success rates are improving every day, there’s still the risk of failure based on several factors. Despite that, families that have undergone BMT for their kids agree that the procedure is well worth it.
‘If you have the means, please go for it,’ advise the parents, ‘it’s the best gift you can give your child – freedom from pain and uncertainties.’
Dr. Kharya Gaurav
One and all, the families praised Dr. Gaurav for his professionalism, and his selflessness accompanying the families and the patients on every step of the grueling journey towards a permanent cure from sickle cell and leukemia.
‘He treats you like family and continues to relate with you years after your transplant is over – and you really don’t need him anymore!’ says Mr. Ehis Iweke, parent of Chiamaka, who underwent BMT at Apollo Hospital.
Ours is a team work, Dr. Gaurav says, ‘without an effective team of committed specialists and nurses and technicians, a successful BMT is not possible.’
Contact Dr. Kharya Gaurav:
Email: gaurav.kharya@gmail.com Phone: +91 921312168