Aidan's Story

Aidan, Rhabdomyosarcoma Survivor

Aidan was 2 when he was diagnosed with alveolar rhabdomyosarcoma in his thigh. His treatments included surgery, chemotherapy and radiation therapy.

I was a normal, active 2-year-old little boy enjoying going to playschool and Moms and Tots with my mummy. One evening my daddy was massaging me after my bath and he felt a little lump in my thigh. Mummy was away, so Daddy had to wait two weeks before he could show her. When Mummy felt it she thought it was just a lump from a vaccination I had had in my leg a couple of months before. The next day I started vomiting and I had a fever so Mummy took me to the doctor. He felt my lump and said he wasn't worried about it, but told Mummy that if it was still there in two weeks she should take me for a scan. Mummy still thought it was just a lump from a vaccination, but Daddy kept telling her to take me for a scan.

Five weeks after seeing the doctor, Mummy took me for a scan. The radiologist told Mummy that he didn't think it was anything sinister, but my doctor said the lump should be removed anyway as he said he didn't like the look of it on the scan and it had little legs on it. The next week Mummy and Daddy took me to see a surgeon and he said there was no hurry at all to take it out, but he would do it soon if they wanted him to. He took it out a few days later and told Mummy that it was bigger than he thought it would be... it was as big as a golf ball.

The next day, the surgeon found out that the lump in my leg was an alveolar rhabdomyosarcoma tumour, and he got a big shock - he had never seen one before. He told Mummy a few days later. I remember Mummy starting to cry like I've never seen her cry before, and the ladies at the doctor's rooms gave her a box of tissues and made her a cup of sweet tea and put their arms around her. My sisters kept asking Mummy why she was crying so much and then my biggest sister, who was seven, heard Mummy on the phone saying that I have cancer, and she started crying too. Then Daddy came and we went back to speak to the doctor, as Mummy couldn't stop crying when the doctor was trying to talk to her. I didn't understand what this meant, but now that I'm four I understand a little bit more. I know now that it meant that I was very sick.

Treatment

AidanThe next day Mummy and Daddy took me to a pediatrician who treats children in our city with cancer. I spent the whole day having blood tests, a CT scan, and an MRI. Then we saw the kind pediatrician again and he told us that we had to go to a special children's hospital in Cape Town very soon, as there were no doctors in our city who could help me.

Mummy, Daddy, and I left two days later and drove all the way down to Cape Town. The next day we went to the big children's hospital and I saw lots of children there with no hair. I saw a special children's oncologist who told us that I had to have more surgery as the surgeon hadn't taken the whole tumour out. A few days later a surgeon with a very kind face took out the rest of my tumour, checked my bone marrow and put a portocath into my chest so that I could have chemo more easily. Four days later I had my first chemo, and the next day we went home as the oncologist said I could have the rest of my chemo in my home town. Then I had to go back to Cape Town to have my lymph nodes checked. I had some chemo in my home town and it was very yucky! It made me feel very sick and made me vomit a lot. My mummy kept bringing me yummy food to the hospital, but it all tasted yucky and made me vomit. All my hair fell out, so did my eyebrows and eyelashes.

Aidan with DaddyThe next month we had to go back to Cape Town for six weeks so that I could have radiation on my leg. I didn't see Daddy or my sisters for a long time and it made me very sad. Every day Mummy had to give me some medicine to make me sleep before I had my radiation and we did that for four and a half weeks.

I don't remember having radiation as I was asleep all the time, but every day when I woke up I felt horrible and cried a lot. It was so nice when it was finished and we went home again, but I still had to have so much more chemo.

I had chemo for 13 months. Mummy sat with me at the hospital all day and Daddy stayed with me at night. I missed my sisters so much when I was in hospital. I hardly ever went out anywhere as I picked up germs if I did and would have to go back to hospital again. Mummy and I spent a lot of time at home and I didn't go back to play school or play with any of my friends until I finished my chemo. I made some new friends at the hospital though that also had cancer, and Mummy made a lot of new friends with mummies who also had a child with cancer.

Aidan and His SistersRecovery

I was very happy when Mummy and Daddy told me I didn't have to have any more yucky chemo, and the hospital gave me a little party. When the pediatrician told us that my white cell count was good again I went back to play school and made a lot of new friends. I was very happy then! I missed them all so much. My hair, eyebrows, and eyelashes grew back very quickly and it was a fun day when Mummy took me for my first haircut. Now Mummy keeps putting gel in my hair and making it all spikey! My tummy gave me trouble for quite a long time afterwards and I had to take laxatives, but now it is okay. I feel very tired, especially when I go to play school and I have a long sleep in the afternoons.

AidanLife Now

I am so happy now that I don't have to go back to the hospital anymore, but every two months Mummy takes me to see the pediatrician and I have to have my blood checked and have a chest x-ray. I don't mind, though, and everyone tells me that I'm such a good boy when I let them put a needle in my arm and take pictures of my chest. The doctor always tickles me when he feels my body and he makes me laugh a lot. When we are finished Mummy and I go and buy a bottle of kiddie's champagne and we all have some at supper time to celebrate that all my cancer is gone.

Thoughts and Hints for New Patients

From Aidan's mummy: I wish I had known that a lump is never to be ignored and should be checked out as soon as possible.

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Mary-jean le Roux 30/07/2013 04:14 pm
Hi Aiden and family. Thanx for sharing your story. I went through almost the same thing when I was 7, 22 years ago. I had leukemia. Congrats on being in remission:). Keep on being a brave boy (and mummy)

Regards

Kate Milbourn 30/07/2013 03:56 pm
You are such a special brave boy Aidan! We were so happy when we heard that your cancer had gone and that you are now able to just enjoy being a little boy and continue to bright such joy to your family!! Your parents and sisters are equally brave and their strength through this trying time is an absolute inspiration.

With love Kate (your Godmother Megs cousin!) xx