Rhabdomyosarcoma: Part Three | Treatment begins

Childhood Cancer Awareness | Gold ribbon

In Part Two I described how my son finally got a bed in Great Ormond Street Hospital, and we were waiting for biopsy results and a confirmed diagnosis.

I knew absolutely nothing about Childhood Cancer, and there’s still a lot I could learn about other types of cancer, but once you have the name of your child’s cancer you very quickly find out things you’d rather not.

The first thing you have to learn is how to pronounce the name of the cancer. I remember the nurse breaking it down for us. Rhab-do-my-o-sarcoma. See this video from Chris Lucas Trust about trying to say that word.

Learning that my son definitely had cancer was an incredible shock. Even though we had the scan and knew he had a growth/mass/lump whatever, to actually hear the words YOUR CHILD HAS CANCER is the worst.

We were on a busy open ward and I was struggling to hear what we were being told over the noise of other people talking and seemingly every television on the ward playing a different channel at top volume.

I’d asked the nurse to pull the curtains round the bed, but it didn’t help that much with the noise of course, and I felt that I was being swallowed up by a deafening black hole. I’m surprised I didn’t faint. Looking back I’m sure this could have been handled better. I read about other people being taken aside into a quiet room. It wasn’t so for us.

Anyway, later on, when I had calmed down, the nurse explained it all again, but there was no time to relax. Suddenly there were so many places we had to be. Lots more scans and also a trip to the photographer. Not for a sentimental family shot, but for a photo of the inside of my son’s mouth for the hospital research and archives.

We also had a visit to the Day Care to meet the Oncologist. We met another nurse who spoke to us about the Hickman Line (central line) my son would need so he could have the chemotherapy administered into his veins, and he was booked in for the surgery to have it fitted.

The Hickman Line is a central line which is used to deliver chemotherapy intravenously. One end of the line sits in the jugular and the other end comes out through the chest wall. Special care needs to be taken so that the line does not get damaged or dirty. The line can not get wet, so bathing becomes almost impossible and swimming was a definite no-no.

Handing my son over for an anaesthetic and surgery didn’t ever get any easier. Giving permission for the surgeons to cut him… no words can describe it.

We also said a sad goodbye to the ENT ward. The doctors and nurses had been absolutely fantastic, but we were Oncology patients now, and we could no longer stay on Peter Pan Ward.

Next stop was Giraffe Ward. This was in the new part of the hospital and each patient had their own room with en suite. Big windows separated the rooms from the corridor which joined them to the play room and the nurses station, and the all important communal kitchen.

We were the newbies. My child had hair and was not yet connected to a drip stand. We looked nervous and still in shock, lost and anxious in this new world.

Others looked like they had developed a sense of belonging and ownership, but they weren’t aloof. They were welcoming and understanding, recognising that we were still trying to make sense of it all. Ready to listen to this new family’s story and then share their own in solidarity.

The first chemotherapy went in and almost immediately the vomit came out. Unfortunately, my son’s best friend from school arrived at exactly that moment too!

TO BE CONTINUED…

Thank you for reading

Marie-Céline

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