‘Everything would have been so much harder without Puttinu’s help’
SAMUEL PACE GRIMA has been cancer-free for two years now. Almost five years ago his parents received the horrible news that their four year old son was suffering from Leukaemia. After battling the condition for two years, chemotherapy was no longer working and Samuel was put on a bone marrow donor registry. Miraculously two perfect donor matches were found for Samuel and, two years after the bone marrow transplant, Samuel is a healthy and happy nine year old. Speaking to Rebecca Iversen, his mother, ROBERTA, describes Samuel’s journey as a child with autism who was also battling cancer. Most importantly she speaks about the role Puttinu played in their lives.
When was Samuel diagnosed with Leukaemia?
Samuel found out he had leukaemia one week before his fifth birthday. He was suffering from bone pain in his knee which did not leave, not even after several visits to the doctor and being on pain killers for two months.
As a nurse I knew that it had to be something more. So we took him to hospital, they ran blood tests and not even two hours after taking the tests, it was confirmed that he had leukaemia.
How did you explain this to Samuel?
We told him straight away that he had cancer but of course at that age he didn’t truly understand. I knew due to my work what he was about to go through but we tried to prepare him as best as we could. We tried to make him as happy as possible and he coped well. For a child who also has autism of course it was difficult for him but thankfully at least he was able to speak to us to tell us in the first place about his pain.
What was your initial reaction and feelings at the news of Samuel’s diagnosis?
It was a huge shock. Being a nurse I knew what was coming and just how difficult the treatment was. To be honest the whole three year journey would have been so much harder if wasn’t for Puttinu, friends and family.
How long did Samuel suffer from cancer?
Samuel suffered with cancer for 3 years and treatment started immediately, beginning with chemotherapy. After a year of chemo Samuel was declared as being in remission but the cancer came back three months later. This meant an even stronger treatment for Leukaemia was necessary. After 3 years of fighting it, the cancer came back for the second time and this time in the cerebral spinal fluid. This relapse was enough to indicate that chemo was simply not working. And so the search began for a bone marrow donor. By some miracle, after only three months on the register, two donors were found.
What happened when you received the news that Samuel had a match?
Usually in terms of bone marrow transplants, parents are not matches and siblings are 40-50 per cent compatible, however in our case none of us were compatible with Samuel. We had to give permission for a foreign donor to be found. Now to find one foreign donor as a match is a miracle in itself but to find two 10/10 donors was very lucky.
You hope and wonder that there will be someone out there for him but then you say god knows how long it’s going to take to find a true perfect match. We were on top of the world when we found out.
What physical and psychological impact did leukemia have on Samuel? What was the process of the donor transplant like?
The donor was in the UK and we spent around about seven months there. Samuel did his radio and chemo therapy there and the process of the transplant began. It is a long and gruelling process and even when we came back to Malta he was on heavy medication to stop him from rejecting the transplant all together.
The changes he went through were incredible. He had everything from ulcers in his stomach that were so bad he could feel the pain in his back even though he was on morphine. When he was on steroids his moods would change dramatically. From being depressed, crying, to being angry and then to being happy again.One minute the treatments would make him put on a lot of weight then other treatments would make him lose weight dramatically because he lost his appetite. At one point he was even allergic to a certain type of chemo and a certain injection needed to be given. If I had to compare it is like injecting glass into your muscle, it was almost like sending your child for torture every day. Even after the transplant, the fight was not over and Samuel contracted Septicaemia. He was getting infection after infection and even after all that we nearly lost him. The changes he went through physically and psychologically were unbelievable.
What impact did this all have on Samuel’s development and education?
Being such a sick child meant he missed school. He missed all of Year 1 and went back to school for Year 2 in his remission period, but in Year 3 he had the relapse so missed another year. He went to school in hospital when he was in England and I use to work with him a lot in hospital to keep him up to date with school work.
Right now he’s in Year 5 and didn’t even end up repeating a year. He’s a very bright child and has really done so well in the last 2 years with going back to school.
The experience has led Samuel to mature early. He knows what cancer is. He knows it can kill. He lost many friends to cancer and both he and his brother appreciate and understand life and what it means. The experience has made him and his brother inseparable.
What role did Puttinu have in those three years?
From day one Puttinu was there for every single step and anything we needed. If he wanted a toy to make him happier they would get it. He was of course a special case because he already had autism and so many complications with cancer so truly the support we received from them was priceless.
With Puttinu you did not even need to go to them they always came to you. The minute the doctor told us they had a found a match Puttinu where on the phone with me. They told me that they were to book my accommodation and flights and all I had to do was take care of my child. I mean really that’s such a load of your shoulders.