It was Australia day 2010, and we as a family, Ron (husband), Rhys, Brooke, Ryan and Rylee were enjoying a day at the beach and having lunch out. On the way home we stopped for ice cream,…I had to take a picture of Rylee in the car with it dripping everywhere, little did I know that was the last photo I took as a NORMAL family.
It was the next day and it was bedlam getting the kids ready for the first day of the year at School, My son Rhys first day at high School, and Brooke Year 7 and Ryan Year 3. My husband Ron always takes 3 weeks of in January to have some family time and help with the excitement of getting the kids to school finding classes and teachers etc but he stayed home with Rylee as she was really sleepy this morning. I returned around 10ish and she was in her cot ( Rylee was 16mths) and giggling and I picked her up to have her breakfast.
She was leaning to one side and couldn’t raise her arm, thinking she had a pinched nerve and after about half hour knew there was no change I went to my local GP. He did a few catch ball, walk here types of tests and asked me to proceed to the Gold Coast hospital and he would ring ahead and for us to go to the 4th floor and see the Paediatric specialist. We had no idea and the Drs weren’t saying much as they are running tests, the took blood out of a vein that took 3 doctors to try and find, put in a cannula to give her some medicine and steroids.. Why steroids? … We are just conducting tests is all we got.
The next morning after overnight stay in a cold room with 3 other children crying and disturbed for observations and meds, she was taken down for an MRI. I had no idea what they were looking for. Mrs Rivett we are just ruling out possibilities. Oh possibilities, what are the possibilities??
The first time I had to hold down my baby so they can put a mask on her to knock her out, tore my heart in half, trying to be tough and smile and comfort her holding back the tears, meanwhile all I wanted to do was take her home from all of this and go back to the beach.
We waited for over 2 hours to see our little girl who was bought out in a cot heavily sedated…All I saw was people looking at me with sad eyes and the time was going in slow motion, as we walked back to the ward and directed into an isolation ward. We left our little girl heavily sedated with some nurses whilst Ron and I were ushered into a room with a laptop and told our girl has a brain tumour the size of a mandarin 8cmx8cm in her frontal lobe. That is all I can tell you and the ambulance will be here to take you to Brisbane Royal Children’s to meet with Oncologists and Neurosurgeons to discuss what the course of treatment will be.
You often here the phrase “I feel numb” but couldn’t imagine that feeling…. I didn’t have to imagine now. The adrenalin that kicked into a mother with a very sick child is something I hadn’t experienced and wish it on no one ever. Its a case of fix her but I have other kids and a life and bills and responsibilities.. There was no time for crying, other than my husband who just found a corner, hard for the husbands, their little princess and they can’t protect her from this dreaded cancer. Or they can’t fix it.. Its hard for the dads.
I remember writing lists, phoning relatives, phoning schools, phoning friends to help out with my other children. I wanted to go home and get some clothes but the ambulance was there, so one list included clothes for a few days…I laugh now thinking that I thought it was only going to be a couple of days in hospital.
So the ambulance ride, I couldn’t talk all I did was cry and cry and cry. I learnt throughout the journey you become fond of the darkness as no one can see your tears or having a shower as no one can see your tears. We arrived in Brisbane and met with 2 doctors who I will learn to trust and become lifelong friends.
It was black and white, Rylee has a tumour, we need to biopsy her to identify type. We then need to complete a treatment plan which will include chemotherapy and radiation therapy. She will undergo at least two brain surgeries the first being in 3 days after the steroids have released some pressure in her head. Oh…ok… we were sent to a neurology ward and given a private room to try and let all of this sink in. It took weeks before it did that we now belong to a different world. A world full of tears, pain and sadness amongst some happiness in between. What a roller coaster. That’s the best way to describe it… down down down, then up up with success then a major setback and you are free falling again.
Rylees protocol had a name SJYC07… this was going to be her best chance of survival if we followed the research put into her type of tumour which was biopsied and now has a name SPNET, Supratentorial Primitive Neuroectodermal Tumour.
Her treatment began on the 5th Feb 2010 with her first brain surgery ( we nearly lost her as she haemorrhaged and they had to transfuse her whole body of blood) enough to get a firm diagnosis. She then recovered and after that month had a central line inserted into her chest to receive the toxic chemo that was going to shrink this tumour. It was 4 months of 4 different drugs administered to her. The side effects include vomiting, hair loss, mouth ulcers, weight loss, her bottom was burning as she passed the chemo out of her body, UTIs, infections and loss of all her immune system.
She had a second surgery after the 4 months to remove any residual tumour and about a week after that she declined, her fevers were sky high, she was lethargic and her head looked very swollen, it was discovered that she was holding fluid in her brain and underwent another surgery for the insertion of a shunt to relieve all excess build up of fluid.
2 months later we were on a course of daily radiation to her head, the part where the tumour sat to ensure that any cancer cells are eliminated. 30 days of a general atheistic and to be screwed into a mask to the bed to avoid any movement to be radiated for a mere few seconds.
All before she was 2 and a half!
The last part of the protocol was 6 months of oral chemo just to be sure. Throughout all of this Rylee had an Nasogastric tube inserted for feeding and to take all of her medications. She had numerous blood transfusions and platelet transfusions.
She is a bright light my little girl… Every photo I have taken she smiles, of course there were some bad times and crying but most of the time she was laughing she learnt to walk again holding an IV pole. She just constantly smiled throughout this whole journey. She even used to thank the nurses after she had be poked or prodded with needed or dressing changes.
A lot of people say to me I don’t know how you did it… how you could have gone through all of this.. My response is I couldn’t have got through it without Rylee, she was my rock, I just had to look into her eyes and I knew everything was going to be alright.
The start of her treatment was every three months she had MRIs and LPs (lumbar punctures), after 3 years we went to 4 monthly MRIS no LPs. We are now four years from diagnosis she is on 6 monthly MRIs and she has rehab and botox therapy to her left side arms, hands and legs as a result of the tumour giving her left side hemiplegia. But she is one determined little girl that wants to be like everyone else and she will find a way to do that.
A lot of people say I don’t want my babies growing up, they grow up so fast.. I am so the total opposite. Every year and every milestone she makes is a blessing and I cannot wait until the next one is achieved. Time flies and that’s great for someone that can relapse tomorrow into the childhood cancer world, but as the time goes by the chances of this become a little further away.