My beautiful son Ilhan was diagnosed in may 2013, with refectory desmoid tumour/fibrosarcoma in his head and neck.
Over the course of 5 years he has received substantial amounts of chemotherapy, 4 different regimes, had maximum proton beam radiation, he has being left with a lot of side effects mainly due too the location of his tumours , he has a tracheotomy for breathing and has a peg tube for feeding and medicines!
Whilst on treatment in June 18 Ilhan had a relapse, this came on all of a sudden in the space of 5 days he went down hill, after a scan Ilhan was immediately placed on a very intense 96 hour regimen of chemotherapy at that time, we were told as a family that it was unlikely Ilhan would recover, that any treatment was too bide us time too make memories, this chemotherapy made Ilhan really unwell but a miracle after a 2nd cycle and a week at home too start the 3rd, my beautiful boy started talking and it only got better by the end of the 4th round Ilhan was back too his old self, this is the tricky part is ilhan’s heart function was getting low, so we all agreed too switch too a new drug, PAZOPANIB this is a targeted therapy chemo and works by blocking receptors, ilhans tumour is TKI POSITIVE, Leeds children’s oncology have kindly funded 3 months, on the agreement of funding being given by nhs England!! Right now after 4 REJECTED appeals we are left with no option other than too SELFFUND, without this Chemotherapy it is certain that ilhan will relapse , and be placed on palliative care , WE HAVE NO BACK UP OPTIONS OF IV CHEMOTHERAPY OR RADIATION! This chemotherapy costs around 800 pounds per month!! Please help my beautiful boy we need too raise funds for another 21 months of chemotherapy £16,800, any amount will help!
I am awaiting a letter from Ilhan’s consultant In regards too monthly costing which I will add too the go fund me when received!!
Any money over the amount raised will be donated back too the charities that have supported us over the years!!