People ask me all the time about my involvement with the BMDP – and I explain that my son had a transplant after being diagnosed with one of the more difficult types of leukaemia. Where the diagnosis offered only one choice; to have a transplant.
We were lucky to find a matching donor in Australia and a decade and a half later, Daniel has a degree, a job and things are good. For me, life these days is all about building for the future – adding names to the BMDP donor register, chasing up potential matches for our patients and making sure we have the funding to grow.
So, it was a lightning bolt at the weekend’s “Hair for Hope” when a voice spoke out of the blue, “Jane, great to see you… but I guess you don’t remember me?”
I didn’t immediately recognise him – it was a long time ago when I had a child with cancer and a distinctly younger CCF volunteer – and now their Honorary Secretary, Ho Cheng Huat – was one of Daniel’s “minders” at Camp Rainbow. Reflecting back since the weekend’s chance meeting, I wasn’t sure how much I wanted to remember those days; dashing between hospital, home and office; juggling three children and working with Daniel as he stoically faced up to the innumerable tests and procedures. We rationalized it as our own personal NS – bad-hair or no-hair days, boots on, don’t ask and just do it!
I learned a great deal from those months. Daniel gave back to me all the courage that I ever tried to give to him; the generosity of friends from nowhere and everywhere who helped in small unobtrusive ways, who sent us hats and the others who beat a drum for us.. Most of all, it was about tenacity – being brave enough to never doubt that this was anything more than a tunnel – with light and friendship along the way and surprisingly a lot of laughter amid the anguish – but definitely a tunnel with an end in sight.
So I guess this is my small salute to all of today’s parents of children with cancer – doing their own NS routine. You must know there are so many people out here all shouting out for you and your amazing children – we’ve got 50,000 of them all signed up to give their bone marrow if it’s needed – and after this weekend, there are a lot of shaved heads all giving and growing their support.
Daniel Prior was NUH’s first paediatric Bone Marrow Transplant in 1996
So what exactly goes on behind the scenes in the life of a BMDP committee member? I spoke with Declan MacFadden – loving husband, doting father, leading executive and dedicated committee member of the BMDP – about his vision and what inspired him to embark on this journey.
With six wonderful children, a successful career and opportunities to travel and see the world, Declan led a fulfilling life. Until one day, several years ago, all this fell apart when his youngest son was diagnosed with leukaemia. “It felt like a death sentence at that time,” says Declan.
“Nothing I knew, none of my business capabilities or family experience, could help. The feeling of powerlessness was overwhelming,” he adds. “Our desperate search for assurance and help was met by the wonderful staff at NUH and BMDP who helped me and my family through that terrible time. I will never be able to thank them enough – not only for their medical expertise but for the emotional support, counsel and factual information they provided. The BMDP team includes leading transplant surgeons as well as people who have gone through the same awful experience, so they are eminently qualified to shine a light on the darkest time a family can face.”
Declan’s son went through a successful transplant and is now a strapping young man of 17 years.
Emerging from this traumatic ordeal strengthened Declan’s resolve to help families who are facing the same situation. “I am driven, at the deepest level,” says Declan, “to do all I can to make sure other kids get the chance that my child was given, and that other families are sustained by the same support that BMDP provided to mine.”
Declan describes his commitment to the BMDP as a cause in which he can exercise his vision of supporting sufferers, educating the public, increasing the register of donors and raising the funds so urgently needed for tissue typing tests.
Not one to mince his words, he said, “We need to be consistent in our work for BMDP every day of the week, every day of the year because we do not know when we will be called upon – morning, noon or night – to provide a matching donor for some youngster who is in pretty desperate shape. We can never forget that BMDP is in the business of saving lives, and I feel privileged to play a part in this remarkable organisation.
Having signed up as a bone marrow donor, there are still many questions unanswered on what exactly happens when someone is found to be a matching donor for a patient. We asked Dr Yvonne Loh, blood stem cell transplant physician, to give you a simple overview of the most frequent questions our donors ask about being what actually happens during a bone marrow donation.
So what will actually happen if I’m identified as a match?
First of all, we will call you and arrange a time to collect a small blood sample which we will use for “Verification Typing”. This will confirm that you are indeed a suitable match for the patient.
If the doctor selects you as a donor, the next stage is what we call “Donor Workup”. This includes a full physical examination to make sure that you are fit and healthy to donate and during that session the doctor will share more about the donation process including any risks and side effects. You will also be informed if the transplant doctor has requested for either a bone marrow or cells collected from the blood – Peripheral Blood Stem Cell (PBSC) donation. If the transplant doctor has no preference, then you will be able to choose the method you prefer.
Can you explain more about the donation process?
There are two methods of donating bone marrow:
Traditional Bone Marrow Donation is a short procedure done under General Anaesthesia and bone marrow is extracted from the pelvic bone. Usually the donor will be admitted to hospital the evening before and discharged the day after donation when the effects of the anaesthetic have worn off.
Peripheral Blood Stem Cell (PBSC) Donation is an outpatient procedure and the donor is given a small injection of filgrastim – or GCSF – every day for five days. This is a naturally occurring chemical which stimulates production of the bone marrow cells (blood stem cells) which then spill out into the bloodstream where they can be collected through a blood-donation like procedure. The difference is that once the blood is collected, it goes through an aphaeresis machine which removes ONLY the blood stem cells and everything else is returned to the donor. This procedure usually takes 6-7 hours as an outpatient and immediately afterwards the donor is free to leave.
Which is the best method?
Neither method is better than the other although the default for most donor centres today is to harvest blood stem cells using the PBSC method which cuts out the need for a General Anaesthetic. If the donor has a preference, we would try to accommodate that unless the transplant centre specifically makes a request based on the patient’s medical condition.
Are there any side effects?
For the traditional Bone Marrow harvest, there is always some risk associated from a General Anaesthesia but from the actual harvest procedure, serious side effects are very uncommon. As only 5% of the donor’s bone marrow is collected, feedback from our donors usually suggests the after-effect is similar to having a sports “tackle” and they are a little stiff for a couple of days.
With a PBSC harvest, some people experience headaches and / or heaviness to the limbs rather similar to a flu-like ache during the 5 days of hormone injections. This is usually relieved through taking a simple painkiller and in almost all cases, these stop immediately upon collection. Again, serious side effects are very unusual.
What can I expect after I have made the donation?
After a traditional Bone Marrow harvest is completed, most said they would be back at work or studies a day or two after making their donation.
Sometimes a PBSC collection may require two days, but it is an outpatient procedure and the donor does not stay in hospital. After the collection is complete, usually the donor is free to go home or back to work and the bone marrow or blood-forming cells will be back to their normal levels within two to four weeks.
Do I have a choice as to which procedure I prefer?
Sometimes, the transplant doctors will allow you to state a preference and we do try our best to support your preferred method of donation. However, depending on the patient’s condition, the doctor may recommend the procedure that would best aid in the patient’s outcome.
Are there any follow up examinations?
Yes, you will be looked after every step of the way. There will be follow-up sessions scheduled after donation – usually at least one week and one year after your donation. Once the doctor signs off after your last visit, you will not need to return for any subsequent follow-ups. All costs incurred will be covered by the BMDP including any required medicines in the unlikely instance that any treatment is required.
Do I need to incur any costs?
No, you do not need to pay for anything. Any out of pocket expenses will be reimbursed to you including travel expenses as well as any loss of earnings that may result from your donation.
Do you inform my employer that I am a donor?
Yes, we will definitely communicate with any relevant person or individual depending on the donor’s needs. Usually employers are very supportive and willing to support any donors through giving additional leave as necessary to cover the various appointments. We will also talk with other members of the donor’s family if this would be helpful in reassuring them of the procedures involved.
We have had the most walk-ins in the history of the BMDP during the past two weeks plus a donor drive organized by Drew and Napier bringing us to almost 600 new donors.
So a huge thank you to everyone who has come down to the less-than-regal Kingly building – we have been a meeting place for old friends and new alike – and all united in one mission. Almost everyone had visited our website and learned more through the video but one question came around time and again, “I can still back out later can’t I?”
So here’s a story. Sitting in a doctor’s office the final verdict comes; you need a transplant to survive – it’s black – it’s white! and then comes the explanation about finding a bone marrow donor. Most Singaporeans don’t have lots of siblings who offer a potential match so the search request comes to us and the BMDP gets to work. Only half our work is about building the register and every day we are providing a service to the hospitals to find that one perfect match for their patients.
Great news when we do find a potential match but hold off on the celebrations until we do the verification tests which all takes time… and if that person really is a 100% match to the patient, there’s hope and suddenly a reason for all those daunting days and weeks of chemotherapy the patient has had to endure.
Our volunteer donors are not under any obligation and between the day a donor signs up and age 55 when we take them off the register, so many things will happen; donors themselves may become unwell and thus disqualified from donating or perhaps they simply cannot be located. But, if they are available, fit and healthy – does the patient really deserve another stark reality, that the donor signed up, but wasn’t really serious so we all go back to square one.
The answer to the question; yes! of course you can – but on behalf of all our patients, their families and medical teams – not to mention all of us at the BMDP who fight every day to save lives, then please sign up knowing that you really do have a hero inside you.
When his sister, Leow Fonteyn was diagnosed with Myelodysplastic Syndrome (MDS) which later progressed into Acute Myelogenous Leukemia (AML) in early 2003, a transplant was the only way she was going to survive.
With two sisters who didn’t match it was young brother Kenneth who was identified as being a perfect match and who donated his bone marrow to save her. Sometimes it’s not always smooth sailing and a reaction after the transplant caused her some skin discoloration, but thanks to Kenneth and her fabulous children, she is doing fantastically well 9 years later…
For Kenneth, with all the recent news about the need for donors he signed up on the BMDP register just in case he’s a match for anyone else in need. Way to go, Kenneth!
Not everyone knows it, but we are a GLOBAL organization – when a local search doesn’t find a match, we push out around the world to see which registers, from countries as far away as the US, UK, Germany and even Japan, can deliver a match for our local patients.
Likewise, we get searched by other countries and finding a match outside Singapore means that our global business operations need to kick in with our team of couriers crossing the globe to transport those life-saving blood stem cells.
April really was a crazy month breaking all records with a total of 12 transplants facilitated and at one stage, there were four BMDP volunteer couriers all in flight at the same time with one of the team crossing the Pacific twice in as many days. I bring this up for two reasons; first of all, our work is not just about building a local register, it is about delivering a service from start to finish – on time, on track and definitely on schedule.
Salute! to our amazing, selfless and committed courier team – great work and a milestone in our mission to save lives.
Today we are featuring Dr Yvonne Loh, Haematologist and Medical Director, Haematopoietic Stem Cell Transplant Program from Singapore General Hospital.
She will be answering the questions we frequently come across during donor drives.
Dr Yvonne Loh is a blood stem cell transplant physician at the Singapore General Hospital, is a volunteer donor and sits on the board of the BMDP as a volunteer. Working with patients with blood diseases such as leukaemia and lymphoma she speaks about what it means to be a bone marrow donor.
“Family sizes in Singapore are getting smaller, and fewer patients have a brother or sister who may serve as a suitable blood stem cell donor.”
Q: Why are bone marrow transplants needed?
When a person suffers from leukaemia or other deadly blood-related diseases, sometimes the best chance for a cure is through a bone marrow or blood stem cell transplant.
Q: What are the chances of finding a donor within the family?
Family sizes in Singapore are getting smaller, and fewer patients have a brother or sister who may serve as a suitable blood stem cell donor. Only a third of patients will find a suitable donor amongst their siblings. Parents are usually not suitable donors for their children because each child inherits half their set of genes from each parent. Consequently, more than half our stem cell transplants today are between unrelated donors.
Q: How does one sign up as a donor?
A simple buccal swab is all that’s needed to sign up to the registry. The swab is a painless way to collect DNA from the cells from a person’s cheek. The DNA information is then recorded in the registry. If you’re found to be a match to a patient, the BMDP will contact you to donate.
Q: What is the procedure for a bone marrow transplant?
If you are found to be a potential match for a patient, BMDP will contact you – possibly years after you first signed up. You will then take a blood test to confirm that you are indeed a match. If so, BMDP will arrange for a medical check-up and blood tests to ensure you are healthy to donate. The donation process can be either from a vein in your arm or from the pelvic bone; the doctor who does your medical check-up will discuss the alternatives with you. Once you have given your consent and are deemed healthy to donate, a date will be fixed for the donation, which will coincide with the transplant process in the patient The recipient will undergo chemotherapy and/or radiation therapy, making his/her blood counts fall very low in preparation to receive your blood stem cells. When these have been collected from you, they are infused into the patient through his/her vein. After around 2 to 3 weeks, these will grow into new red blood cells, white blood cells and platelets derived from you.
Q: What are the risks to a donor?
Bone marrow harvesting or peripheral blood stem cell harvesting are very safe procedures. For bone marrow harvests, the risks to the donor are mild, rare and self-limiting.
Q: Will a donor be asked to donate again after the procedure?
It is uncommon for a donor to be called on to donate to the same patient again. The instances of this being required are either because the initial collection was insufficient or the patient’s blood counts are not recovering. More commonly, it is because the patient has relapsed and may require another transplant or for a portion of the donor’s cells (called lymphocytes) to bolster his immune system to fight away cancer cells. In general, it will be safe to donate again after a period of 3 months. You will be assessed for fitness to donate, and it will strictly be on a voluntary basis should you agree to donate again
Q: What is the recovery period?
In general, after a bone marrow harvest, there will be soreness over the lower back for approximately one week. Most donors are able to walk readily the day of the harvest. For peripheral blood stem cell harvest, donors will feel tired during the days of the collection, but would recover within 1-2 days. Within 2 weeks of donation, most donors’ blood cell counts would have returned to normal. Whatever blood stem cells were donated would be regenerated by the body.
Mohammad Reza was a normal, young man – active, always kicking a ball around with his friends and absolutely crazy about football. In December 2008, life changed abruptly for the 11-year-old when he was diagnosed with acute lymphoblastic leukaemia.
Overnight, he had to learn a very different game – juggling school work and hospital visits while trying to come to terms with a diagnosis that offered only one long-term solution: transplant or die.
There was a huge concern that Reza’s chances of finding a match would be very slim, as he is an ethnic minority. After a wait of almost one year, a matched donor was identified for Reza.
In September 2009, he received the most precious gift of all: a bone marrow transplant from a Singaporean donor on the BMDP register.
The bone marrow transplant took place just in time as Reza’s condition was gradually deteriorating. Surprisingly, Reza’s donor is Chinese and today, 12 months post-transplant, our young man is up and running again.
Many other patients from the minority ethnic groups are not as lucky as Reza. Today, the BMDP is pro-actively recruiting new donors from the Malay and Indian communities to ensure that patients like Reza will have a better chance of finding a match in the future.
The Bone Marrow Donor Programme
8 Sinaran Drive #03-02 Novena Specialist Center Singapore 307470
Tel: (65) 6916 0370 Fax: (65) 6916 0371
Monday to Friday: 9.00 am – 6.00 pm Closed on Saturday, Sunday and Public Holidays