Rae Rae Trust

General information

On 28th July 2014 whilst everyone was enjoying their summer holidays Rachael had a routine consultant appointment. During this consultation the consultant referred to an x-ray from 2013 that showed some fading and a slight curve in the left femur that he wanted to check out.

Rachael’s mother was immediately concerned as the consultant seemed very focused on the image. Rachael’s father was less concerned as it surely isn’t possible that repeated medical professionals could asses Rachael’s case and decide physio was the appropriate treatment for something potentially life threatening. How wrong he was.

The fact that the MRI was scheduled for the next morning did nothing to alleviate any fears. However it was the summer holidays so we carried on as best we could. Later that same day Rachael’s mother received a call informing her that a tumour was obvious on the MRI and Rachael was being referred to Oxford for assessment, she was given a pair of crutches and told Rachael was not to put weight on her left leg.

Right there is where a normal child’s life was put on hold, no idea what the tumour could be or how dangerous it would become. Rachael was trying to enjoy her holiday only to be told she was now on crutches and we couldn’t tell her why.

Rachael is fortunate enough to have 4 parents and what was 4 but is now 5 siblings. The parents made alternative arrangements for all of the other children and went together to the Nuffield to find out what this all meant for Rachael.

We met Mr Theologis who would later become our all-time favourite person. He took Rachael into Tom’s ward as an emergency so a biopsy could be performed the next morning. The next few days are a blur of denial, pain, anger and fear.

Following the biopsy Mr Theologis informed us all that Rachael had cancer. Words you never expect to be used in reference to your child let alone your beautiful 12 year old daughter who had been treated for over a year with physio. For those unsure physiotherapy is not a recognised treatment for cancer.

The following day it was confirmed that Rachael’s cancer was Ewing’s sarcoma a particularly rare form of bone cancer that is more prevalent in boys than girls. The day after that we were informed that the cancer was not just isolated to Rachael’s leg, it had spread and she had a further 5 tumours in her lungs.

This now full assessment of what Rachael had and where meant that her chances of survival were less than 25%. 25%! A 1 in 4 chance that your daughter would not survive.

When asked how long Rachael had if she hadn’t been diagnosed and treatment not started we were told less than 12 months. Please note that from 28th July noted above to this point of Rachael’s story no more than 9 days had passed.

From enjoying the sunshine, playing in the pool, going on safari and doing all the other things we all take for granted to being on crutches, a cancer patient with minimal prospects and a guarantee of hair loss due to the treatment we were all devastated. Devastated is not a big or strong enough word to describe all the feelings during this time but is the only one I can find close enough to portraying the horrifically terrible circumstances we were presented with.

Rachael was then and remains now the strongest of the 5 of us that went to all of these meetings. Upon hearing the worst Rachael wanted to take part in a trial chemotherapy where her results would be used to ascertain the difference between 2 ways of administering chemo and which was best.

How proud we were, however in order to take part Rachael would have to go through a number of tests with only a 50/50 chance of being entered into the programme. Her mother and father took the decision that we didn’t want to wait for tests when she needed lifesaving treatment now and as such we informed the consultants to proceed with the VIDE, Rachael’s chemotherapy programme.

By the time all the other children returned home Rachael had had her first chemo, her siblings were distraught with the news. How do you tell a small child that their sister isn’t going to die? We found a way or rather Rachael found a way. She was strong and determined typical Rachael.

Within 2 weeks Rachael’s hair started to fall out, this was her biggest challenge so far. No child wants to be different. However Rachael’s biggest concern was she didn’t want people feeling strange because her hair was falling on them. How did she deal with this? She shaved her hair off of course, all except her fringe which until this day (8/4/15) she still has a strand or two.

Everyone involved in Rachael’s life will have been moved by her way of coping, she is an amazing child and her fight has made us all better people.

Rachael’s initial treatment was 6 sessions of chemo consisting of 4 drugs each day for 3 days followed by 24 hours of fluid, the comparison I use to explain this is that she endured 16 x times the amount of chemo and adult would receive in similar circumstances. She pretty much flew through this although an infection in October saw her admitted to Milton Keynes general for a month, our favourite hospital that misdiagnosed her for over a year.

Throughout Rachael’s chemo her test result were better than we could have hoped for. By the time she got to January 2015 4 of the 5 lung tumours had vanished and she was ready for surgery on her leg tumour. This surgery consisted of effectively removing Rachael’s leg from just above her left knee all the way up and including her hip joint and replacing it with a metal prosthesis.

Rachael was expected to be between 2 to 3 weeks recuperating, she was home after 8 days. The last part of Rachael’s treatment consists of 8 VAI, 2 days of chemo 1 of fluid. So far she is 3 down 5 to go but this chemo makes her physically sick for around 8 days. Its making things harder going for her that’s for sure but she keeps going.

5 to go, that countdown we are all familiar with. Why do all countdowns seem to start from 5? When her chemo is finished Rachael will be having 2 weeks of radiotherapy to try and kill any remaining cancer cells in her body as the chances of it returning are far higher than even your worst nightmare would suggest.

Rachael has been able to give her wheelchair back (she has been in a wheelchair since Aug 2014 to March 2015) and is now learning to walk with her new leg.

Rachael Louise Parker is now a 13 year old teenager that had barely any hope of making it this far, she is a fighter and is winning. The end is in sight and we all have faith that she will beat cancer. I cannot imagine some of the thoughts this beautiful child has had to endure or realities she has had to face over the last 8 months but she’s still smiling and we long to see that smile forever more