Rhabdomyosarcoma: Part Two | Going to Great Ormond Street | Waiting for a biopsy

Childhood Cancer Awareness | Gold ribbon

In Part One I wrote about the signs and symptoms of my son’s cancer.

For more information about the general signs and symptoms of all Childhood Cancer, please go to Be Child Cancer Aware

Our local hospital gave my son a CT Scan, but we did not get a confirmed diagnosis until almost a month later.

During that month’s wait we almost lost him. It was a very stressful time.

The CT scan revealed a large mass in my son’s sinus cavity. It was just a few days before Christmas.

They had no planned inpatients over the Christmas period, and, because they were preparing to downsize and move the children’s ward, we found ourselves all alone, which was actually strangely comforting.

My son got thoroughly spoiled by the staff. The nurses and doctors did everything they could to give him (and us) the best possible time, although I was so sad thinking all the time that it could be his last Christmas. We spent most of the day watching the same DVD over and over again. For the record, it was the children’s film, “Madagascar” which he had received as a Christmas present.

After Christmas we left the local hospital as he needed to be somewhere more specialised. We were waiting for a bed at either The Marsden or Great Ormond Street. The first available bed was at Great Ormond Street (GOSH).

We arrived in a bit of a fluster as it wasn’t easy to get there by public transport, especially as by this time he was too weak to walk and there is no bus or train direct to the door.

We had an ENT appointment first, before he was admitted. It all seemed so unreal.

I remember the doctor getting out his ‘scope to look up my son’s nose, and saying to me “let’s have a look at this polyp then” and me thinking they’re still not taking this seriously. Even though I had a copy of his scan with me, showing the huge mass. The doctor seemed to be treating it all very lightly …

Then on the same day there was the stress of signing the consent form for the biopsy. The first of many consent forms as it turned out.

As it was still the Christmas holiday period the hospital was working at minimum levels. We were given a bed on a general ward (Rabbit Ward).

It was on this ward that we had an horrific night where he was struggling to breathe so much that we thought it was the end. Doctors and nurses spent the whole night trying to get an IV line in so that they could give him medication (I don’t know what) to help him breathe. At 5am, they eventually managed to get a cannula in his foot and give him the drugs he needed. It was totally exhausting and such a worry.

There was great camaraderie among the parents on the ward, and it was this that kept us going. On the general ward, the children all had different types of problems, but as parents we all had something in common. Later, when we stepped into a new world of pure oncology I discovered friendships that were even deeper, lasted beyond the end of treatment, and I remain friends with those people still today.

The next step for my son was that after the new year, when the hospital lists returned to normal, and wards re-opened following the seasonal break, he was moved to the ENT ward (Peter Pan Ward). He was still an ENT (Ear,Nose and Throat) patient right up until we got the biopsy results.

TO BE CONTINUED …

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Marie-Céline

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