This post was originally published on March 18th 2018 via Ellacott’s Ramblings.
I think every parent will agree with me when I say that all we want for our children is for them to be happy and healthy. I know that is what I wanted and continue to want for my own four children.
Anyone who knows my children will know they are happy, energetic and brilliant at driving me round the bend. They are also as healthy as they can possibly be, having had the usual minor illnesses, no major allergies and are all up to date on their immunisations. However, sometimes that isn’t enough to keep them happy and healthy.
Two of my children have been diagnosed as having special needs. Matthew (12) was diagnosed with Autism when he was four years old and now attends a special school for autistic boys. Charlie (10) was diagnosed with ASD, ADHD and ODD when he was eight years old. He currently attends mainstream primary school, has an ECHP and takes three different medications every day. Even though there are days which are difficult for us due to having two children on the autism spectrum, we have been able to cope quite well all thanks to the support we have.
Just over three weeks ago, however, saw the beginning of one of my worst nightmares as a parent. We discovered what we thought were two lumps on either side of our son’s spine. It had caused Charlie some discomfit and it was slowly becoming a struggle for him to bend over. Otherwise, he still appeared to be a happy and healthy ten-year old.
We were unable to book an appointment with our GP, so I ended up taking Charlie to see a doctor at our local GP Hub, which accepted walk-ins. He was quick to send us back to our GP with a letter explaining the situation, which led to us being given an appointment I had been denied barely a couple of hours earlier. An hour after being told that the lumps were probably just cysts, we had a phone call from our local hospital confirming an appointment for the Monday. It really is amazing how fast the NHS can move things along when they choose to, especially when there are serious concerns about a child’s health.
The doctor who saw Charlie on the Monday morning will forever have my respect and appreciation. She ordered a number of tests, some of which included her chasing up the departments to get him booked in on the same day. Over the course of the day, much to Charlie’s annoyance, he had a blood test, an X-Ray, an Ultrasound and a MRI with contrast.
The following day, we returned to the hospital at the request of the doctor. We were informed that the scans were being sent to specialists at a couple of different hospitals with the plan to admit Charlie as soon as possible.
Then, she broke my heart by telling me my little boy had a tumour, possibly a sarcoma. I have been through my fair share of horrible experience, but none will ever compare to being told that my child possibly had cancer. I had just been put on medication for anxiety the week before, so I didn’t think I was strong enough to go through something like this. My amazing friends told me otherwise and have continue to tell me these past few weeks whenever I feel like I cannot cope.
Things have continued to move quickly since that day. Charlie had a biopsy, CT Scan and another MRI at the Royal National Orthopaedic Hospital by the end of the same week. A week later, we received confirmation that he had cancer, a soft-tissue sarcoma, and that he would be seen by an amazing doctor at University College Hospital in Central London. By the end of last week, we had met with the team who would be treating him at UCH, had Charlie go in for a minor operation to place his Picc Line and received the full name of his tumour – a Malignant Peripheral Nerve Sheath Tumour.
You would think at this point I would be falling apart from the stress of what we are about to go through or be feeling confused at the sheer amount of information that has been thrown at me, but amazingly I am not. The support my family has received from our families, our friends, the children’s schools, and even from people we barely know, has been downright astounding and it has truly lifted our spirits. However, it is Charlie who has allowed us to remain positive, happy and smiling, as he continues to be cheeky little boy everyone knows and loves.
Today (19/3/18), I received confirmation of his treatment plan. It had already been confirmed that Charlie would not be receiving chemotherapy as research showed the likelihood of it working to shrink the tumour were very low. So, it was decided that he would have surgery to remove the tumour before he received Radiotherapy.
Due to the location of the tumour and the fact that part of it has grown into the gap between two of his vertebrae, the surgery comes with huge risks, including paralysis. However, these risks, for us, are worth it if it means our little boy has the chance to beat the cancer. All we can do, therefore, is continue to remain as positive as possible and deal with each day as it comes.
I will continue to update everyone with his ongoing treatment and outcomes, even if the worst complications happen. As I have been told by my friends and a few people who I had huge respect and admiration for, it is important for us to talk about what we are going through and for me, this seems to be a great way to do that.
Before I sign off, I would like to ask for your donations. We, as a family, have decided to raise money for an amazing charity, Children with Cancer UK. We have chosen a target amount of £2500 and when we hit that total, our daughter Rachael will shave her head in support of her brother and other children currently battling cancer.
Charlie’s Journey – Please click on this link, read, donate (if you can) and share.
Thank you.
Please note that the page has now closed to new donations.
Baking & Tantrums 