The Sunflower Fund’s Bandana Girl
An inspirational and very special young lady who launched “Bandana Day” for The Sunflower Fund during her own struggle with Leukaemia.
Story of My Sister: Lindy Anderson
Written by Kim Anderson
My sister, Lindy Anderson, was a grade 11 pupil of Wynberg Girls High in Cape Town . She was a very active and enthusiastic 16 year old, who excelled academically and was involved in many other activities including drama, water polo, writing for the school magazine and the church.
For a few weeks, Lindy felt uncharacteristically tired and then developed a skin rash, and this prompted a visit to the doctor where some routine blood tests were done. The next morning, on Friday 7th February, my mother was called by the doctor, who instructed her to urgently fetch Lindy from school, as the blood tests revealed a completely unexpected diagnosis of leukaemia.
A very confused Lindy was immediately called out from the midst of a fire drill at school, and rushed to see a haematologist at Groote Schuur Hospital. As it was late on Friday afternoon by the time the doctors had reviewed the blood slides, a bone marrow biopsy was postponed to Monday morning. This was necessary to establish what particular type of leukaemia she had, as each type is treated in a different manner.
It was a very long and agonizing weekend for the family. I work as a doctor at Groote Schuur Hospital and our mother is a nursing sister, so we were acutely aware of the implications of the diagnosis, while at the same time reeling from the shock of this dreadful news.
On Monday morning, a small piece of marrow was aspirated from her hip bone under local anaesthetic. She buried her face in the cushion and hardly made a sound during this painful procedure. I held her hand and watched helplessly. (this process is to test patients – not the same process for donors donating)
It was anticipated that preliminary results later that same day would give us enough of an indication of the type of leukaemia so that treatment could be planned and if necessary, started immediately. An acute leukaemia is an extremely aggressive illness and without treatment can kill within weeks. Initial results were confusing to the haematologists who were still unable to ascertain the type and further tests were ordered on the bone marrow samples.
We were told that either way, chemotherapy would be planned and, during the next 3 days while we awaited further results that would dictate the particular kind of chemo (there are several possible combinations), Lindy was counselled and prepared for the inevitability. She was advised to cut her thick, long blonde hair as it would make the experience of losing her hair during chemo less traumatic. A trip to the hairdresser and a funky-looking Lindy returned.
While my mother and I constantly struggled to fight back our fears and tears and feelings of gloom, Lindy remained positive and lifted our spirits. A major setback (to her outlook) was experienced when doctors casually informed her that the chemo would leave her permanently infertile and that nothing could be done about that. She was devastated, and sent me a heartbreaking text message to say she could not imagine her future without children in it. I just wanted to believe that she would still have a future.
Finally, on Thursday 13th February, the doctors called the family in to let us know what further news they had. It was further bad news. The kind of leukaemia she had was not what they had anticipated. It was a rare aggressive type, and could not be cured by chemotherapy alone. We were told that a bone marrow transplant was her only hope of survival, and that without one she may only have had months to live.
And so the race against time began, to search for a suitable bone marrow donor. Initially all family members had blood taken for tissue typing as one has the best chance of finding a donor within the family, particularly siblings (where the chance of success is in the region of 25%). During this time, Lindy went back to school. She was anxious to keep up with her school work, and particularly didn’t want to fall behind in maths and science. The doctors said it would be okay for her to continue while she was able to. We braced ourselves for the lab results, and again received further bad news. No match was found within the family.
The next step was to look for a suitable donor amongst the public. This is where the South African Bone Marrow Registry (SABMR) comes into place. They have laboratories that do tissue typing testing and store information on the tissue types of all people who have volunteered to go onto the Registry.
But the South African Registry is small, despite past attempts at increasing public awareness. Perhaps it is because people are afraid of the procedure, not realising that the test is done from a tube of blood obtained from one’s vein, and even if a person is identified as a match, only further blood donations are needed to perform the so-called transplant, and not actual bone marrow.
A Transplant is an unfortunate choice of word as it is generally understood to imply a surgical procedure, but the actual process is more comparable to a blood transfusion.
Looking for a compatible match has been likened to looking for a needle in a haystack, as several thousands of tissue types exist. Many searches are not successful, but many are and in those cases can be life-saving.
Within a short space of time, Lindy got progressively weaker and lost weight, and just two weeks after her diagnosis was admitted to hospital. A few nights before she had attended a school play rehearsal, but on that night she had a high temperature, nausea and vomiting, and severe bone and joint pain, and required intravenous antibiotics and analgesia. As the leukaemia cells multiplied and took over the healthy blood cells, her immune system became progressively weaker, leaving her body at great risk of acquiring infections. She had to be in isolation in the ward, and visitors had to don protective gowns, masks, caps and gloves in order to prevent passing any bacteria on to her.
Her church arranged for willing members of her congregation to have their bloods taken for tissue typing after the service. It was a moving experience, as virtually the entire congregation was eager to take part. At the same time, plans were put together to initiate further mass donor drives and the opportunities to increase the number of people on the registry seemed limitless.
Friends, churches, schools and companies near and far all pledged their support in wanting to join in the search, and we spent the weekend compiling lists of various venues where this could be done, and collecting numbers of all the medical personnel who wanted to assist in the process. We were so touched by the willingness and eagerness of people to get involved. The task suddenly did not seem so overwhelming. With multiple possible blood-letting venues and enthusiastic volunteers to recruit and supervise the events, we felt the ball would be rolling in no time. But then we learned about the reality of the cost of running these tests, and our hopes were dashed until The Sunflower Fund stepped in to help raise funds to cover the costs of further donors joining the Registry.
The statistics involved in finding a suitable match are mind-boggling. There are roughly 100 000 different possible tissue types. To put this another way, if there are 42 million South Africans, then there are 420 people in this country with the exact same tissue type as Lindy. We just needed to find one to save her life. There were currently in the region of 30 000 people on the S.A.B.M.Registry. If this number could be boosted to 100 000, then theoretically there would be a match on the registry for every single person who might need one. This is not to say that this total amount of people would need to be tested before finding Lindy’s match. Her match could have walked in off the street that very day.
Every day we were in such an anxious state, awaiting possible news of a donor. Two months after her diagnosis, Lindy’s specialist, Prof Novitzky, walked into her hospital room and announced that a perfect donor had indeed been found. We could not believe it! We were overjoyed! Lindy now had a fighting chance to beat leukaemia.
First, she had to go through two rounds of chemotherapy to achieve a remission. This involved several weeks at a time in hospital receiving harsh intravenous drugs and suffering through the side-effects, which she did so very bravely. The support of her friends and family, and even cards and calls from people who didn’t know her but had heard of her struggle, inspired her throughout her treatment.
Just before her transplant, Lindy was involved in the filming of advertisements to launch the first Bandana Day. She was very excited to be involved in this project and we were very proud of her for finding the strength to help others in her position.
On 29 July, she received the infusion of her donor’s stem cells. This was completely painless. The cells ran in through her drip over 18 minutes. Eighteen days later there were signs of success, as the new cells began to “take” in her body and started producing new blood cells for her. Then followed the slow process of recovery. Chemotherapy and radiotherapy had left her body very weak.
She had to be on very strong immune suppressing drugs to prevent her body from having reactions to her new stem cells, and unfortunately this meant she was very susceptible to infections of all sort. That was the risk we knew she faced. Tragically, the worst sort of complications developed. She battled more bravely than anyone could be expected to, and her doctors did all they could for her, but after multiple attacks of severe and relentless infections over many months, her little body just couldn’t keep up the fight any longer. She died peacefully at home on 8 February 2004.
Lindy inspired so many people with her bravery and spiritedness. I am honoured to be her sister. Right at the end, when she knew she was dying, she still tried to live life to its fullest each day. Despite feeling terribly sick, which she was: feverish, nauseas, in constant pain and unable to walk, she still wanted to experience life’s joys. She lunched at Kirstenbosch, wheelchaired around the aquarium, had high tea at the Mount Nelson , and took in the sights from the car along the newly reopened Chapmans Peak Drive . Each extra day she lived was truly a gift to us all.
Part of the legacy Lindy leaves behind is that many thousands joined the Bone Marrow Registry in response to her plea. We, her family, sincerely hope that due to the efforts of The Sunflower Fund, the ongoing success of Bandana Day, and the generosity of spirit of South African people, the Registry will continue to grow in numbers.