On 24th August 2015, just after our holiday in Italy and Alice’s baptism, Esther started Radiotherapy treatment at the Queen Elizabeth Hospital in Birmingham.
After intensive chemotherapy Esther’s tumour in the primary site (her right arm) was almost completely gone, however the protocol for Esther’s high aggressive cancer routinely includes localised treatment in form of surgery and/or radiotherapy. The latest MRI scan showed areas of residual disease in three different spots on Esther’s arm, so the multidisciplinary team at BCH decided against surgery – as this would have been too traumatic for Esther with no additional guarantees of a cure. A series radiotherapy sessions were booked instead, as I explained in one of my previous posts. Radiotherapy uses high-energy x-rays to destroy the cancer cells at the affected area using a large machine. Normal cells can also be damaged by radiotherapy, which may cause side effects. Cancer cells cannot repair themselves after radiotherapy, but normal cells usually can. Normally when treating the type of cancer Esther had, not only the remaining cancer cells are targeted, but the whole area that was affected by disease at diagnosis is irradiated, that for Esther was quite a large area on her right arm and under her armpit. A small section of her lumbar spine also showed some disease at diagnosis back in December 2014. My husband and myself were given the choice whether to irradiate this area or not. It was a very difficult decision to take, because the potential side effects of irradiating this specific area that were described to us were quite bad. After several discussions with doctors and after changing our mind a few times, we decided to go ahead and have the affected area in Esther’s lumbar spine included in the treatment.
The main short terms side effects we were warned about were tiredness and skin-burn, with a possibility of developing diarrhoea or sickness following irradiation of the lumbar spine, all of which was manageable with medications. Long terms side effects included reduced growth of Esther’s arm and of her vertebra in her spine and risk of secondary cancer (because of the radiation). Luckily Esther didn’t have any of the short terms side effects and sadly we will never know about the long term ones!
Esther’s Radiotherapy treatment consisted of 7 weeks of daily radiotherapy sessions, done 5 days a week with breaks on Saturdays and Sundays. Because it was vitally important that Esther didn’t move during her sessions, she had to be put to sleep with a very light dose of anaesthetic before every treatment, which meant that she could not eat or drink anything for breakfast. So every morning for 7 weeks Mummy and Alice woke up, got dressed, jumped in the car and drove for about 40 minutes to Queen Elizabeth Hospital. Esther used to play with her iPad in the car on the way there. We used to park at the top of the multi-storey car part (“in alto-alto”), take the lift and cross the road to the cancer ward. We then waited for our turn playing Lego in the little play area in the middle of the waiting area. We were soon met by one of the amazing nurses and went in the radiotherapy room. There Esther was put to sleep with the “smelly gas” at what point I had do go out while she was prepped for her radiotherapy session. The radiotherapy session lasted about 20 minutes and after then she was moved to the recovery room, where she was left sleeping and normally woke up after about another 20 minutes. We then had some nice cuddles before getting back to the car to drive home. On the way back Esther normally had a snack and a drink. It varied a little depending on what time our session was scheduled for, but normally we left home at about 7:00 am and we were back just before 10 am.
Esther soon got used to it all and became a routine. Although she didn’t understand what was going on, she took her treatment very seriously and never complained about having to wake up early. She was amazing through it all and adapted incredibly well to everything, remaining her confident and playful self… she was such an example! The worst part for me was when she was separated from me in the radiotherapy room. I found it heartbreaking that she had to go through all that at such a young age, but I stayed strong and always tried to make everything look like a “game”, keeping it fun. The nursing team helped very much with this and I can’t thank them enough for all they did.
If I think now back to the time of Esther’s radiotherapy treatment the amazing medical team at Queen Elizabeth comes to my mind first. It was by far the easiest part of Esther’s cancer treatment, made even mildly enjoyable for Esther by the amazing nurses who looked after her: the brilliant Macmillan nurse Helen in the first place, but also Kate, Jessie and all the nurses and anaesthetists were fabulous, taking our hand and leading us through it all with so much love, patience and kindness.
Esther was given a DVD and a book for children that explained the treatment she was going to have in a very simple way, and she enjoyed watching the DVD and having the book read to her by me before bed time. She was also given a sicker book with her favourite characters, and every day before her treatment she could add a new sticker on the page for that week. She got a bead of courage for every session, a special one that glows at night… we talked about what colour to choose the day before and Esther collected all her beads on a long string in a special pink pot. She looked forward to seeing nurse Helen every morning, to get her special bead and her sticker and to chat with the nurses.
Queen Elizabeth Hospital is not a children hospital, so there were many adults waiting for their treatment with us. This was a bit off-putting at first, but we soon got used to it, and we very much preferred to be there rather than at BCH anyway!
After about 4 weeks into treatment Esther’s skin started to get red and burned on her arm. We put cream on to keep it well hydrated and we got a special dressing to put on, but luckily it didn’t hurt, Esther never complained about it.. it seemed red and sore but apparently it didn’t hurt her, which was great. The dreaded radiation of the small spot on the lumbar spine didn’t cause any side effects and the treatment didn’t make Esther tired at all: she was living her normal life, going to bed after 8 pm and even going to nursery for a few hours in the afternoons, to play with her friends.
On Friday 9th October 2015, Esther had her last radiotherapy session at Queen Elizabeth Hospital and was gifted a certificate, a card, a blanket and toy by the medical team. That day we drove directly to Center Parcs to spend a weekend of fun and adventure, away from hospitals and cancer talks. Ether intensive treatment was finally over, and all that was left was her maintenance chemotherapy and regular doctor’s visits.
In case you are wondering about it, here is Esther’s favourite radiotherapy video “One of a Kind”: