Children With Cancer Fund (Polegate)
5 Western Avenue, Polegate, East Sussex, BN26 6EP Tel: 01323 488561
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In Memory Of Rhys
had to wear a Hickman line and had been told he could not go swimming,
which he did regularly before his cancer. Rhys got
very excited when he found a leaflet about a special swimming dry suit
for kids with Hickman lines that was available. Unfortunately, though,
these special suits are rather expensive so the family asked us if we
might be able to help - which we did!
Below is Rhys' story which was sent to us by his dad Trevor:
Our family is my wife Nikki, and our children are Phoebe (13), Saskia (12), Rhys (10), Xanthe (6) and Seraphina (4).
Rhys is 10, lives in Seaford, and has NF1. He has been a very happy, friendly and able boy. He had an operation in May 2010 at the Evelina to remove 2 inches from his upper right leg, to make his legs equal in length and to help his scoliosis which were both caused by his NF1 condition. The operation went well and Rhys was very excited with the better balanced movement he enjoyed. He had rejoined his football team and was starting training (his muscles were all 2 inches too long so it was a gradual process). He was enjoying the summer.
He developed a lump in his right upper leg hamstring area, mid August, which we though was a muscle knot (due to the longer muscles post operation). The knot did not go away over the week and so we saw his regular physio who suspected it might be a neurofibroma, something which NF1 people get. The lump was growing and gave him pain in his nerve area and hamstring. He was booked to see his NF1 specialists at Guys for the first week in September.
Rhys had a weeks' holiday in the last week in August and returned with a marked loss of feeling and muscle mobility in his lower right leg. He was dragging it a bit.
We had the appointment in September and they started a series of tests, scans etc over a 3 week period (many trips to London), whilst this lump still grew rapidly. After a PET scan showed a malignant nature he had a biopsy then a full operation to remove it on 6th October by a specialist neuro-sarcoma surgeon at St Thomas's (under the Oncology unit at the Royal Marsden). The surgeon had already told us (and we Rhys), that he would have to remove the whole sciatic nerve between the knee and hip area and that Rhys would not be able to move his lower right leg again. So very sadly no football and such activities again.
The surgery was a success and they removed the large (12cm by 10 cm) and aggressive and rare Malignant Peripheral Nerve Sheath Tumour and his sciatic nerve and 95% of his hamstring.
We were then advised that it is the standard agreed protocol to treat children with a sarcoma of size greater than 5cm and minimum grade 3 with Chemotherapy as well as radiotherapy. However, as he has NF1 there was a choice to proceed or not as there is almost no evidence, other than some response shown in a current clinical trial in the US, that NF patients respond to chemotherapy. We made the very difficult decision to proceed.
Rhys has had his first cycle at the Royal Marsden (shared care at Royal Alexandra) and will be having his next cycle in a week. This is for six months. He is doing well but has lost weight and this morning we shaved his head as his hair had started to fall out and he preferred it shaved.