Little fighters stories:
Please feel free to read all the stories of our little fighters. PLEASE NOTE: Not all the photographs in our Little Fighters Albums are nice to look at. Some of the photographs depict the horrid realities of Childhood Cancer. Sensitive viewers should be mindful.
Timothy was diagnosed with Juvenile Myelo Monocytic Leukemia at 10 weeks old. He was diagnosed in the Red Cross Children’s Hospital in the Oncology ward. The doctor told me at the time it is the rarest form of leukemia that one can get, they only receive a case every 2years, one in a million.
Timothy was diagnosed with Juvenile Myelo Monocytic Leukemia at 10 weeks old. He was diagnosed in the Red Cross Children's Hospital in the Oncology ward. The doctor told me at the time it is the rarest form of leukemia that one can get, they only receive a case every 2years, one in a million.
This type of leukemia arises in infants and if diagnosed in time it an early diagnosis as I Tim’s case. The first indicators are low platelet count and increased white blood cells, spleen and liver are enlarged too. The statistics of JMML: if untreated will not survive 1 year, if treated but with no transplant may survive to 2years. A transplant has been found at this stage to be the only cure as chemotherapy and radiotherapy on its own does not help. A full diagnosis can be made with a bone marrow biopsy.
In order to receive a bone marrow transplant certain criteria have to be met, Tim first had to weigh a minimum of 9kgs, his platelets had to stabilize and his white blood cells also had to be in control. He was put onto medication everyday to try and keep the cancer cells at bay.
When Tim was 4 months old we discovered a lump under his right arm which grew at a rapid rate and was the size of a golf ball within a month. Tim was booked for surgery to remove the lump and to have tests done. It was found that it had grown right around the nerves leading to his right arm. They could not remove it but they did take a sample to do tests on. It was found to be TB. When an infant all babies receive a BCG inoculation for TB. Because his immune system was compromised he did not absorb it like he was supposed to, instead it settled and grew a lump. This then meant that Tim was to go on TB treatment. The medication he received was not available in syrup form and only in extremely bitter tablets that we had to crush. Most of the time he threw the medication up and it strained everything! This wound took 4 months to heal.
The day Tim had the lump cut into; he was placed onto the South African Bone Marrow Registry. The following day we had 2 hits!!! This amazed everybody as we all know that statistics show 1 in every 100 000 get a match.
We found out what doctor meant when she said that he would get sick and would loose him if he didn't get treatment. He ended up having to go into hospital regularly to get blood and platelet transfusions. During the months from August to November we were going into hospital for 2–3 days at a time and them home for another 2–3 days and back in again. Eventually the oncologist said we should start Tim on a heavy steroid dose and start weaning him of when the platelet start building themselves up, therefore having to prevent and transfusions. This started working slowly and by December we seemed to have a little more control.
Tim was ready for his transplant in January this year. He was healthy, met his target weight and all bloods were in control. His transplant was scheduled for 8 April, 8 days before his 1st birthday. In preparation for his transplant Tim had a Hickman line put into his chest which leads to the artery in his neck and then down to his heart. This would make drawing blood and administering medication mush easier. We went to the Groote Schuur hospital to start his chemotherapy and we realized that his Hickman line has pulled out, so all the chemo he had been given was pouring out the entrance wound rather than going into his system. He was then transferred back to the Red Cross to remove that one and put in a new one on the other side of his chest.
He received 1 week of chemotherapy to kill the immune system, this will help prevent the body from rejecting the stem cells he would be receiving. He received the stem cells, which take 20 minutes and goes in like a platelet transfusion under strict monitoring.
He celebrated his 1st birthday on 16 April, where all the staff came in and sang for him.
The following 2 weeks is when the side-effects from the chemo kicked in and we went through over R3000 in nappies and had a severe nappy rash that didn't heal quickly because of the white blood cells hat were still almost on zero.
On the 3rd May he was transferred out of the transplant unit at the Groote Schuur and sent to the Red Cross Oncology unit. After having a colonoscopy done we found that he had stage 2 Graft vs Host disease. This is where the dono’'s stem cells are rejecting the host – Tim. This was controlled.
He was put on immune suppressant drugs in order for him not to reject the donor’s stem cells. This has made Tim incredibly hairy as he had to have a high dose because the TB medication he was still on was canceling it out. The high dose steroids also made Tim swell, so now he looked like a typical picture of the cancer child.
During all of this Tim remained a happy child and I was heavily pregnant with Robin at the time. Robin arrived on 22 May whilst Tim was in hospital. I had to leave Robin with Henk so I could continue to care for Tim. Timothy was discharged from hospital on 17 June! We were a full family, all 4 of us together.
On 22 June, Timothy spiked a temp of 38.5C, we rushed him to Red Cross again. After blood cultures were done we found that his Hickman line got e–coli bacteria. His immune system was still suppressed at this stage, by the time we got half way through his treatment on this he had developed Pneumonia and his lungs had started bleeding.
Timothy was fully ventilated. We were advised that he was critical and we were looking at an hour to hour basis. After all he had been through! He remained ventilated for 2 weeks in the ICU, but we were also finding that he continually contracting bugs there. All the medication to keep him alive and the immune suppressant drugs etc had started making his kidneys fail. We were told that if his kidneys don't start working in 2 days we were going to have to start dialysis. Worst case scenario a Kidney transplant!!
Tim pulled through and was sent back to what we now call our room in the oncology ward, the Isolation cubicle. He remained on a cannula where there is oxygen blown into the nostril for another week and a half. Tim was discharged from Red Cross on 24 July. He still has to get blood and platelet transfusions. Because his platelets are low he can bleed from anywhere, his mouth, his stomach, a cut\graze, even his intestines, brain lining and lungs.
When we did his most recent bone marrow biopsy to see if the transplant had worked, we had not received the result we were hoping for. The results were inconclusive. With all Tim's symptoms and how slowly his platelets are building up, doctor told us that she thinks the cancer has come back. They have spoken to the transplant doctor and another doctor in the UK and they all seem to agree that it has returned.
Timothy’s body is too weak to go through another transplant right now. We don’t know how long we have with him, it may be months and it may be years. Doctors did advise that if it is the worst, the cancer having come back, that if he is healthy enough in 2–3 years time we can consider doing another transplant.
We all have our heroes, but I never thought that my child would be mine!