Charlie

On the 20th October 2016 our lives were about to change forever. We were about to learn that our son, our first born had cancer.

"Our worlds were never going to be the same again"

A few days prior to the diagnosis Charlie had a few aches and pains in his legs. Then the night before he couldn't move his jaw. He came into the living room and with his jaw slightly open attempted to talk but looked like a ventriloquist. I called the NHS helpline and the operator began the diagnosis set of questioning only to come back and tell me to take him to our GP in the morning.  So the next day I called in sick at work and took Charlie to our GP. She checked him over and said he could have rheumatism and to take him for a blood test. She also agreed, with my suggestion, to go our dentist to see why his jaw hurt. Later that morning Charlie and I headed home after having a blood test and seeing our local dentist who couldn't see any problem. 

The next day I went to work but left Charlie in bed with pain killers. 

I must stress at this point cancer was the very very last thing on my mind, infact it wasn't anywhere near my mind. I would like to add at this point that some would say...infact quite a few have said that I'm a neurotic mum (I still cut up my kids grapes) .

On arriving home at 3.10pm the next day after the blood test I noticed that I had several missed phone calls from my GP. I called the surgery and was put straight through to our family GP, not the person who sent him for the blood test......no alarms going off in my head at this point!. He explained that Charlie would need another blood test to confirm a diagnosis because they wasn't sure and could i get there by tomorrow? I heard the paint alarms ringing in my head. I explained i could go straight away if needed. He called me back and explained that a team where waiting for me at the local hospital. The alarm bells were now going, louder and louder. 

The next few hours were a complete blur with many moments of what can only be described as "out of body experiences" doctors saying " its blood cancer.....you will be moved tommorrow morning to London .................." all whispers in my head.."will need to stay in for a few weeks" deep breaths!!!

With my husband by my side the next few days were a blur now but I remember no tears and big deep breaths and positive strength for Charlie. Instantly Charlie was a warrior,  a tower of strength. 

Our journey began. From 20th October 2016 - 3rd August 2017 Charlie went through intensive chemo. He endured lumbar punctures, bone marrow biopsy, many different IV chemo's, had a portocath fitted, steriods, sickness, hairloss, blood and platelets transfusions and many hospital stays. We've had some very scary moments with a 10 cm blood clot in his arm, acute kidney damage from the high dose methotrexate chemo and severe constipation but through it all he kept positive and kept fighting. 

Charlie is one of approximately 4,200 children in  the UK diagnosed with cancer every year.

There are so many strong kids fighting this awful disease every day. It was this thought that inspired Charlie to help others. Beat It Box was developed by a negative life experience and turnt into a positive gift. 

The first 10 days we spent in hospital were tiring, exhausting, expensive, and upsetting. It was at this stage that Charlie and I spoke about what we w=could do to help kids now, at this stage of their journey. A gift box filled with useful items to help you during your hospital stays and chemo clinic days was what we came up with. 

Charlie is now in maintenance. This means the the cancer has gone but without continued daily treatment for the next 3 years it will come back. So Charlie is now back to school from September 2017, having weekly blood tests, taking oral chemo every night, IV chemo every 4 weeks, steroids for 5 days every month and a lumbar puncture every 3 months til February 2020. 

 

 

 

 

Together we stay positive, 

Together we are strong.