MY HEALTH EXPERIENCEDERMOT TATLOW: Dermot's son, Devan, is waiting for a bone marrow transplant
ON FRIDAY, April 30th, I dropped my wife Indira off at the State Department here in Washington DC when the doctor called. The quarterly biopsy two days earlier had come back positive.
I pulled over. My four-year-old son Devan had been outside the period called maintenance for over a year, and we thought we’d dodged that bullet.
When he first got sick back in August 2007, we were on our way to Hong Kong, where we were going to stop over before our move to Beijing. Indira had been posted there.
As we got on the plane in New York, we noticed that Devan’s gums were bleeding slightly, but we figured he’d been brushing his teeth too hard. There was more blood and when we landed in Hong Kong we went to the hospital, where he was diagnosed with leukaemia. We were airlifted back to the US the next day.
He went through treatment and we thought life had gone back to normal.
After the phone call, I had to get Devan out of school and down to the clinic.
The doctors held a conference on Tuesday at which they decided that Devan would have five weeks of chemotherapy, using arsenic trioxide mostly, combined with a treatment called ATRA. Then he would have two weeks’ rest, then another five weeks of treatment, after which he should go into remission and the transplant could take place.
Dev is taking it very well. He’s not happy to be not going to school. He knows he has bad cells and that he’s on strong medicine to fix it.
The chemo is targeted at the specific type of leukaemia he has. He’s being treated as an outpatient and is doing well. We caught it early because we were looking for it. He’s a tough kid.
The transplant will take place at the hospital attached to Duke University in Durham, North Carolina. The medical staff are the most experienced in cord transplants and they say we can plan to live there for six months.
Only 3 per cent of the donor registry is of mixed race, while with cord blood, 30 per cent are from mixed races, and that’s where we got our lifeline. What is otherwise thrown away at birth can save a life.
A lot of us don’t know this – I didn’t know about this until Devan got sick. These cells can make life. It’s a no-brainer. A few years ago it was wacky science, but it’s being done all over the world. And our ability to work with stems from cord blood will improve.
What we’ve seen lots of, and what has gone global, is people thinking: ‘That could be me’. It’s something a lot of people hadn’t thought about. Everyone should be saving their cord blood. The campaign didn’t take off just because we are good at social networking or because we’re journalists, it took off because we hit a nerve.
Here in the United States all you do is take a mouth swab and send it in. Bone marrow donation is just like a blood draw, they have made incredible medical strides.
The treatment mortality rate is double-digit, but we just have to suck it up and do it. But sometimes you wake up and the reality is the nightmare.
It’s morphed a little from being a desperate search for a donor for Devan to leveraging this goodwill to get people to register to be donors. We’re also looking for a better match, because it’s not perfect, though the doctors tell us it’s enough.
A couple of weeks ago we had nothing, so we are in a better place now.
The mixed-race registry is woefully under-represented. Go to any school here and it’s full of mixed-race kids, and mixed race means anything from my wife Indira, who is half-Indian and half-Caucasian, to president Barack Obama.
There’s a whole global reach to this campaign. We’ve got this incredible global network, it’s all over Facebook and 20 million Twitter followers are seeing it.
The head of the national donor registry here said it had an unprecedented 900 people one day calling it, asking for kits. That’s a massive spike. And there are drives all over the place, and people are talking about it. We’re spreading the word that other kids are in this situation. This is the anti-spam, the good that social networking can be. It’s proved itself that way.
We have friends all over and it’s really taken off. In a way, Devan’s medical problem is one of globalisation. When you’re doing everything you can to give your child the chance of the best possible outcome, the idea that something good may come out of it helps you to confront the fear that lies ahead.
The website has been tweeted like crazy. Demi Moore, Ashton Kutcher, Paris Hilton, Buzz Aldrin, Lance Armstrong and Ed Norton have all tweeted about Devan’s situation. Even Kim Kardashian.
He has featured in millions of Facebook statuses, while the Huffington Post, Gizmodo and other sites have all tried to encourage people to register at the Be The Match site in the hope that they’ll be a match for Dev, or for someone else.
In conversation with Clifford Coonan, Devan’s uncle
FINDING A MATCH: WHAT DOES DEVAN NEED?
Devan needs a bone marrow transplant or an umbilical cord blood match to help save his life. Genes from Poland, India, Sweden, Ireland, England and Germany all feature in his ethnic make-up, but the same mixed ancestry, which makes him such a handsome lad, has also made his situation very complicated and limited his chances of finding a bone marrow match to about one in 200,000.
His situation is very serious, but there is hope. A potential cord blood match has been found, and although it is not a perfect six-out-of-six match – the marker normally used – doctors believe it will be enough for him to have an operation, once he goes into remission after a lengthy period of chemotherapy.
There is still no match for him in the global adult stem cell/bone marrow database, which has 14 million entries.
CORD BLOOD: WHY IS IT SO IMPORTANT?
Cord blood is considered particularly valuable for helping cancer patients. A child’s umbilical cord, which is normally thrown away after birth, has been found to contain a small amount of blood rich in immature stem cells, the source of blood cells in human bodies, and these stem cells can grow into any type of blood cells. This cord blood can be easily stored, preserved and used for matching patients who have diseases such as leukaemia.
Devan’s father is Irish/German and his mother is German/Swedish, while Devan’s mother, Indira, is of mixed Polish and Indian ethnicity. In a globalised world, this kind of heritage is becoming increasingly common – president Barack Obama is probably the world’s most prominent example of someone of mixed race.
Banking cord blood is a complicated issue in Ireland. The Tissue Bank runs a directed/sibling cord blood programme only. Potential recipients must be referred by a consultant haematologist or oncologist to be eligible for the programme.
At present, collection can take place only in private hospitals, and cord blood must be stored in tissue banks overseas because there are no public or private Irish cord blood banks.
Medicare Health Living currently is the only Irish company authorised to provide this service by the Irish Medicines Board under EU Directives – it supplies the tools for the cord blood to be extracted at birth, cryopreserved and stored for 20 years.
The most suitable donor for a bone marrow transplant is a fully matched family member, but due to falling family sizes, a sibling donor is not an option for a large number of patients. If a suitable donor is not found within the family, a search for an unrelated donor is necessary, according to the Irish Blood Transfusion Service.
The service says there are currently 20,000 bone marrow donors registered in Ireland, but more are needed.
As in the United States, the majority of Irish donors can avoid surgery and give a peripheral blood stem donation, which involves a straightforward four-hour outpatient stay at St James’s Hospital in Dublin.
For more information, see giveblood.ie, where potential donors are encouraged to apply online. Be The Match on Devan’s website can be read at matchdevan.com.
