Jaxsons' fight with cancer.
The Doctor explained this could be one of two things retinopathy of prematurity or retinoblastoma, ugh! Just like that, one day I’m happy, playing and the next, I could possibly have eye cancer, they couldn't complete the examination as they didn't have an ultrasound available on this day, so I was urgently referred to great ormond street.
My parents didn’t know what to think. My mum has been crying every day, and dad is very sad as well but tries to hide it because my mum is sad.
After that visit, I had one appointment after another.
During my next visit to the hospital, I would have to be put to sleep to have a retinal scan done of my eyes,this was the day I was diagnosed with retinoblastoma. I had cancer. The doctor informed my family that the tumor was grade D on a scale of A-E I just got the option of chemotherapy to try and save my eye and try to get rid of the tumour
Retinoblastoma is a childhood cancer arising from an over growth of retinal cells in one or both eyes and can strike from the time a child is in the womb up to 5 years of age (rarely later). This cancer is treatable if caught early.
Like the others, he informed my family that, worst case, there was a chance I could lose my eye. He had faith however, with chemotherapy i could beat this although I will never see tunnel vision in this eye, I can still see peripheral.
I would now have to be admitted to Southampton general hospital to have a Hickman line inserted into the top of my heart that goes in through my neck and sits on my chest this line is in order for my chemotherapy to be administered every 3 weeks and my blood to be taken every week, I would have to have nurses visit every week to change my dressings that surround my line and a lot would have to change.
CHEMO!!!! I'm only a year old; but the doctor says this is the only way to try and save my eye Well, I guess I’ll have to put my strong cap on and get well for myself and my mum and dad. I don't want them to hurt anymore. I just want them to know I'm going to be ok! Worst case at this point I won't have full vision or I could lose my eye if I don't try chemotherapy.
Chemotherapy has made me lose my hair,made me sick, tired , weak and everything I eat tastes like metal although now I have a lot of meds to try and control the sickness. The side effects make me a very grizzly boy.
Now my family faces an additional challenge of constant hospital appointments and travelling to and from Southampton and Royal London hospital as well as audiology appointments, blood tests and care from 3 different hospitals, this also causes financial strain as they have to take time of work.lI would receive chemotherapy every three weeks providing my blood counts were okay if they aren't okay at any point then I will have to undergo a blood transfusion. If my temperature gets above 38 it's a 5 day admission to hospital for iv antibiotics, I'm also now immunosuppressed so I can/will and have picked up everything I can germs wise, I can't go to crowded places and I miss out on family visits due to some else having the slightest cold. I've spent weeks in hospital so far, It's been difficult for mum and dad to lead a normal life with all of these things happening but they want nothing more than for me to beat this!
I am surrounded by the most amazing support from all the people i have met, these organisations have gone above and beyond for me just some of them included the snowdrop trust team that come out to me every week and offer all the support in the world and are there when ever I decide to be a pickle, CLIC Sargent team have also done so much for all of us, a huge thank you is in order for the continuous support of the Piam Brown unit in Southampton general hospital.
Please, don't let my parents and family get overwhelmed with this and help them fight my battle against cancer. And finally, please share my story with someone else.
I want nothing more than to raise money for the amazing people that have helped us so far and to raise awareness for retinoblastoma.
KNOW THE GLOW.
I will keep you all updated in my journey as it has only just begun!
Thank you from the bottom of my heart!
I am a "survivor" of the same eye cancer. My mother had a similar experience figuring out that I had something wrong. I was 3. This was 27 years ago. I was to in and out of Dr's offices. I did not have chemo though. They had to completely remove my right eye. There was no chance of saving it because it was nearly to my brain. It was a do it now kind of situation. I hope and pray you get through this hard time. I will keep you in my thoughts and prayers!