Many of you will remember my daughter's battle, at 16, with Acute Lymphoblastic Leukaemia which began on January 4th 2014. The support I received from the members on here was phenomenal.
I haven't been able to thank you all enough for it. Anyone who knows about it can skip to the *
She had a terrible time, the treatment was gruelling; chemotherapy, bone marrow aspirations, dexamethasone, inthrathecal chemotherapy (methotrexate in her spine).
She had liver injury, infections, massive seizures, (she isn't able to drive because of them), spent months in hospital and lost her hair, (prom year
), as well as her chance to do her GCSEs with her friends. Many times I thought I would lose her watching as other Mums lost their children. I know we are very lucky.
*Despite this, and while still on chemotherapy, she started hairdressing training last September and successfully completed her first year. Unfortunately while undergoing this training we started to notice that she was walking 'oddly' and he was complaining of pain in her right shoulder.
MRIs revealed Avascular Necrosis (AVN) of the femoral head and humeral head. Left hip and Right shoulder. This is a direct result of her treatment for leukaemia 3 of the chemo drugs and the dexamethasone (I think about 7x stronger than prednisone). The dexamethasone stopped immediately and she was referred to hip and shoulder orthopaedic surgeons.
She had subcutaneous core decompression in her hip on 14th of this month as it's at stage1-2.
However the shoulder is at a far later stage - in fact it has totally collapsed. I expected she would need a replacement. The Consultant said that, given her age, 18, a standard replacement would wear out her glenoid, (shoulder socket) by the time she is 25 and revisions of shoulders are really much, much less successful than hips, knees etc.
So he recommended she have a donor bone replacement. At the time (June) he said the process would take up to 9 months beginning, (application for funding), to the end after physio' and rehabilitation.
She should then have a shoulder for life
Ok, we all thought. A year out of college to get this sorted and back in for next September 2017. That will be ok she can wait that long as she can't lift her arm, (right), at all now so can't cut hair. As usual Lucy coped with another knock-back. She sucked it up.
However she had a follow-up appointment yesterday and he said that the last several applications for funding have been turned down as it's not 'rare' enough.
He expects Lucy's to be turned down too and there is no appeals process.
If you've got this far, (well done!!!), I am feeling obviously very, very upset as is Lucy, but also quite motivated to do 'something' about the situation.
In essence this is a new treatment for joint replacement, one which would not only benefit her, but potentially all of us here who need or might need joints replaced in future.
I want to raise this issue higher, once she's been turned down of course.