In February 2002, after several infections and noticeable bruising, our four year old daughter Kate was diagnosed with a type of acute myeloblastic leukemia (AML). Devastating news, but having come from a medical family where there were always doctors to treat our various ailments, there were no doubts in our minds, initially at least, that Kate’s illness could be treated and cured.
We moved into the CHOC ( Childrens’ Haematology and Oncology Clinic) in-patient ward at the Johannesburg General Hospital for the next eight months while Kate was treated with aggressive chemotherapy. As these drugs attacked and wiped out her diseased bone marrow and the resulting malignant blasts in her blood stream, they left her totally immune-suppressed for months. She endured terrible fevers, injections, blood tests and vile-tasting medication for weeks on end, as well as total isolation from all but the closed family members. Like so many of these remarkable children in similar situations she displayed such deep understanding, acceptance and courage for one so young. After each long sleep-deprived night there was invariably a beautiful, angelic face smiling at me, just waiting to say “I love you, mummy” through the bars of the hospital bed.
After the first treatment, a bone marrow biopsy revealed that she had responded to the treatment and that she appeared to be in remission.
We got a wonderful week at home, reunited as a family of four and several beloved dogs, appreciating every moment together. Dreading the next round, we returned to the Gen, wiser with the knowledge that we could all endure this horrific rollercoaster ride by facing one day at a time. It became apparent that Kate would need a bone marrow transplant, as the chances of keeping her particular type of leukaemia in remission were slim. All four of us were tested to determine our tissue typing, and we waited to hear if Sarah, our eight year old daughter, was a match for Kate. Siblings often provide the best match, but sadly this was not meant to be. In fact, after several donor drives in Gauteng initiated by local radio station 94.7, many schools, my husband’s colleagues and pilots at SAA and countless family members and friends, still no match was found despite a substantial increase in the number of donors on the national registry.
An international search of approximately 7 000 000 donors also proved fruitless. Then Kate relapsed, a dire setback, particularly as her relapse occurred while she was still actively on treatment.
The doors were starting to slam shut in our faces, but different chemotherapy drug combinations were tried twice to re-induce remission.
These were to no avail, and to avoid our precious little one having to spend more months isolated in hospital, getting weaker every treatment with no real prospect of a cure, we decided to bring her home to live out the time that was left to her surrounded by the people, doggies and toys that she loved so much and had been deprived of for so long.
Kate died seven months later in April 2003, here in her own bed at home. By terminating active treatment, and providing her with palliative care such as blood transfusions and twice weekly platelet infusions done at the CHOC day clinic, however fragile, Kate was able to live life to the full for several months before her illness overwhelmed her in those last six weeks.
The love, generosity and care that was showered on us was beyond belief, from dedicated family members and friends to huge corporations and unknown people on the street who were prepared to be tested as potential bone marrow donors.
Dr Janet Poole and her dedicated staff at CHOC worked tirelessly and so caringly to prevent the inevitable and will always have a very special place in our hearts, as will Terri and her colleagues at the SA Bone Marrow Registry. Paul, Sarah and I have lost our little angel, she changed our lives the moment she entered this world and our dearest wish is that through the exposure that her illness created for bone marrow donors, that she will change the lives of those who do still have a fighting chance of recovery.