End of life… funeral arrangements being made

Hi my name is Natalie and I’m helping to raise funds for my 8 year old who has relapsed with Rhabdomyosarcoma.

9th May last year I heard the worse news a parent could possibly hear ‘your child has stage 4 Rhabdomyosarcoma’ he was literally 3 days away from dying because no matter how many times we took him to A&E and the doctors we were just told that it was all psychological why he couldn’t pee and that I should just re-toilet train him at 7 year old when in reality he had a 12cm tumour in his pelvis and mets in this lungs and lymphnodes!

With just that short sentence my world completely fell apart! What should have been an exciting time celebrating the birth of Aidens baby brother just a week later turned into the biggest heartbreak I have ever felt!

I literally think that is why I myself ended up with heart failure as my heart was literally broken into a million pieces!

Throughout this journey he needed, a biopsy and surgery for his Hickman line, a bone marrow test, numerous other tests, a feeding tube, several MRIs and CT scans, depression, 11 rounds of chemotherapy, 2 seizures from the toxins within his treatment and a 3 month continuous stay within the hospital.

This was all before he was even allowed to come home. After that he was allowed to come home but had to also endure intense radiotherapy that led to him having 2nd degree burns.

After 6 months of hell we were given the best news! “Aiden is in remission” however he had to have maintenance chemotherapy for a year!

With this he thrived! He lost his feeding tube, he put weight back on, gained super curly hair! And went on to live a relatively normal life even being back in full time school.

8 months went by fantastically, unfortunately though 2 weeks ago my world shattered all over again, after a routine scan we had the dreaded call ‘we need both parents to come in’

Being pulled into the quiet room to find out that he had actually relapsed and now has 3 tumours in the lung one that they we able to surgically remove on Tuesday to stop him being in pain and to stop the potential risk of his lung collapsing.

Then to being told “it wouldn’t be fair if we didn’t tell you that his chances of actually surviving another treatment is extremely slim, we are looking at comfort and control rather than a cure here, the choice is yours if you decide to put him through another round of Chemotherapy, you need to make memories with him take him to as many places as you can”

Just that one sentence stopped me in my tracks, I felt suffocated, my mind has gone to complete mush since, I can’t figure out how I’m supposed to carry on with my life with a smile on my face in front of him.

How dare Rhabdomyosarcoma take my son away from me! I’ve loved him ever since I first knew about him!

I’m his mother I’m supposed to be able to make every bad thing go away, I’m supposed to protect him! So why do I feel like I have failed?

His brother needs him.

I NEED HIM!!

Honestly if any of you could help give my boy the memories he deserves that would be absolutely fantastic as we don’t know how long we have with him.