Childhood Cancer Awareness

Childhood Cancer Awareness | Gold ribbon

Anyone who knows me well, will be familiar with my experiences of Childhood Cancer. However, I think that there is still an important message to get across:

Childhood Cancer can affect any family, anywhere in the World, regardless of circumstances.

There are many different types of Childhood Cancer and I am not going to go into great detail about each one. If you are interested in all the different types then I will put some links at the bottom of the page.

What happened to my son was very rare, and even though I belong to a large support group, I have not heard of another case the same. Of course that doesn’t mean that he is the only one, or that it couldn’t happen to another child.

Every September is CHILDHOOD CANCER AWARENESS MONTH, and parents all around the World become prolific campaigners. Last year (2017), I put all my efforts into having a big fundraiser at work. It was very successful in raising awareness, but I felt completely drained at the end of it.

To prevent burnout, I will now endeavour to spread my campaigning throughout the year, and leave this page visible all the time as well. I will write individual posts linked to this page occasionally.

My son was a healthy and happy child for the first four years of his life. In his fifth year he began showing signs of ENT (ear, nose and throat) problems. The most significant of these being a constantly runny nose which didn’t respond to antibiotics and then towards his sixth birthday he developed sleep apnoea. This is a very frightening symptom when loud snoring is accompanied by long pauses in breathing during sleep.

Even with these serious symptoms, it was very difficult to get the doctors to take any notice, and I was fobbed off several times. This is a common complaint. Other parents have said they have been made to feel like they were making unnecessary fuss and in some cases have been accused of abusing their child.

We need to raise awareness so that our children get earlier intervention.

The medics think that cancer is so rare in childhood that they often don’t even consider it. As a result, lives are lost due to misdiagnosis and late diagnosis.

My son was eventually admitted to hospital for an emergency scan which revealed a very large mass (growth) in his sinus cavity. He had just celebrated his 6th birthday and we were looking forward to Christmas. That was the moment that changed everything.

After spending Christmas and New Year in two different hospitals, a biopsy confirmed the growth was a malignant tumour, CANCER, called Rhabdomyosarcoma.

The only treatment was chemotherapy and radiotherapy. Surgery was not an option.

In between doses of chemotherapy, my son was often hospitalised with infections, or requiring blood transfusions. His chemotherapy treatment lasted twelve months.

Three months into his chemotherapy, he was given maximum dose radiotherapy. This was daily for six weeks. The resulting ulcers throughout his body from this gruelling but necessary treatment meant he could no longer eat and drink normally, and he had to be tube fed for many months after.

The outcome of all this was that he did go into remission. He was not “all clear” or “cancer free” or “complete cured” … he was in remission; the cancer cells had shrunk and were no longer active within his body, but the dead tumour remains inside him to this day, because they could not remove it with surgery.

His story, for want of a better word, did not end there. The road to recovery was long and there were many late side effects.

The most shocking side effect was a new cancer, caused by the radiotherapy.

As a parent of a child with cancer, you never relax, and remain fully aware of the fact that the cancer could return.

In my son’s case, he did not relapse, but he developed a new cancer in 2014. A lump on his cheek was diagnosed as Osteosarcoma (bone cancer), and it had been caused by the radiotherapy.

The “good” news was that it could be removed with surgery. He would need more chemotherapy first though.

We were prepared, or so we thought, for what was in store for him. Having already been through one diagnosis, we were in reasonably familiar territory. It felt like a strangely safe bubble to be in.

Chemotherapy had other ideas and was quite ruthless in the way it attacked both good (healthy) and bad (cancer) cells. His body was not strong enough to continue the planned treatment. The oncologists were concerned that this new chemo, on top of the chemo he had when he was younger, was causing too much damage to his organs, so they finished his treatment early.

After a short break to allow him to get his strength up, my son underwent almost 24 hours of surgery to remove the cancer from his jawbone and reconstruct his face. The reconstruction used donor bone and tissue from his leg, to make a new jaw. It also left him with very many scars. It did save his life though.

On this occasion he was told that his body was free of that particular cancer. Cause for celebration, except that it doesn’t come with any guarantees, and, we will always worry about his health. Especially as, six months after that surgery, an infection threatened his new jaw and he had more hours of surgery to the area to repair the damage. This time they took donor tissue from his arm, and they left more scars.

I am without doubt that the delay in his initial diagnosis will have continued repercussions throughout his life, along with the long term side effects he has to manage daily.

To help with the extra expenses associated with my son’s illness, we set up a Go Fund Me page. The page is still “live” as it provides a detailed record of what happened following his second diagnosis.

If you need information about Childhood Cancer in general, then I suggest you visit Clic Sargent. They are an excellent charity and have provided us and many other families with both financial and practical support.

For information about the signs and symptoms of Childhood Cancer, there are two main sites:

Grace Kelly Ladybird Trust

Be Child Cancer Aware

I deliberately haven’t provided a lot of extra detail on this page as it would make it a very long read. However, I intend to write some individual posts about some of the more personal aspects of my son’s case.

Thank you so much for visiting my blog and reading this page. Please feel free to share it with others to help spread awareness.

Marie-Céline