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Please Read if you can :)

frogmortonfrogmorton Posts: 25,571 ✭✭✭
edited 15. Oct 2016, 15:41 in Living with Arthritis archive
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.

Ideas anyone?

Toni xxx
Love

Toni xxx
«1

Comments

  • nearlybionicnearlybionic Posts: 2,204
    edited 30. Nov -1, 00:00
    HI Toni
    I am so sorry to hear that after all she (and you) have been through, the thing that could offer her a permanent resolution for her shoulder is at risk of being rejected. Could you contact the local commissioning Board and ask their input/advice? Your MP? Is it available privately? If so try a crowdfunding page on social media?
    I really hope it is approved for Lucy and you don`t have to go down the appeals process. You have a wonderful determined daughter there, thinking of you all xx
    NB
  • migmig Posts: 7,138
    edited 30. Nov -1, 00:00
    (((((()))))) for all of you I'm sorry it's not very practical. Mig
  • Megrose2Megrose2 Posts: 331
    edited 30. Nov -1, 00:00
    Toni, so sorry to hear this. I've recently signed a petition on change.org on behalf of a woman with lung cancer to be given a drug which is already available in Scotland, but not in England. Have you thought about setting up a petition for Lucy? If nothing else, it would bring the problem into the public eye and may well lead somewhere. I would also echo NB's thought about contacting your MP.

    Thinking about you.

    Meg
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    ((((((( )))))))

    I know you told us all about Lucy when it first happened right up to fairly recently but seeing it written down in a consolidated form makes it all sound even worse and also makes me admire both Lucy and her Mum (Don't you DARE protest :mrgreen: ) even more. I'm sure I'd have given up in the middle of it. I whinge about mere aches and pains. You are amazing people, both of you. (Oh yes you are!)

    I do understand the thing about not being able to put a replacement joint into a young body. That is something that one or two parents on the 'My Child' forum have had to face. Utterly dreadful for both parents and children.

    I had bone grafts for my knee revision surgery but I've never heard of donor bone replacement. I tried ARUK and NHS Choices and finally, in despair, Google. Nothing came up other than the use of bone grafts to assist a joint replacement as I'd had, not anything to suggest a different type of replacement. What you write of does sound fascinating and maybe the future for many. Can you point us towards more info please?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • theresaktheresak Posts: 1,998
    edited 30. Nov -1, 00:00
    I can't imagine how you must be feeling, Toni, as both you & Lucy have overcome so many challenges. Apart from highlighting the issue, & contacting your MP I'm not sure what to suggest, apart from fundraising.

    Do other countries have better options? I wish you both all the luck in the world as you face this latest setback. You are a mum in a million.
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    What about crowdfunding?
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • frogmortonfrogmorton Posts: 25,571 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh Gosh!!

    I hesitated to post on here knowing what fabulous people you all are and that you'd all make me bawl again. :oops:

    I am only just holding it together for Lucy ATM!!

    They do this sort of procedure a lot in America which is where the donor bone would come from so most of the info is from there.

    This is what I saved to favourites:

    https://www.shoulderdoc.co.uk/article/1631

    and

    http://www.columbusshoulderdoc.com/alternatives-to-conventional-shoulder-replacement/

    AVN is also known as osteonecrosis.

    Crowdfunding and is definitely an option as is one of those petitions at least that could get it discussed in parliament. I know we could get everyone on here signing and sharing it out on good old social media.

    We are an aging population and the need for this sort of surgery could be immense couldn't it?

    I will contact my MP and get her favourite cancer doc, Dr Tim, to write to support the application. Lucy is even prepared to share her oh so private non-hair photos. She didn't do the facebook thing. She's a private person you see.

    Anyway I will shut up for now and as ever cannot thank you all enough. Nothing special about me - you do what you've got to do don't you?

    Love to you all

    :cry: Toni xxx
    Love

    Toni xxx
  • barbara12barbara12 Posts: 20,771
    edited 30. Nov -1, 00:00
    Toni that has all come from the heart, you keep getting knock backs, but I think this is one to far, I am sure that you will get somewhere with this, and I for one am here to support whatever you do...((())) xx
    Love
    Barbara
  • appleroseapplerose Posts: 3,619
    edited 30. Nov -1, 00:00
    Yes there is something special about you Toni. And so is Lucy. I really don't know if I could do it. I wish you all the luck in the world. There are a few good ideas there and we are all behind you in whatever you do. Could the newspapers help get your story out? Maybe radio or even tv? Local football team/player. (((hugs)))
    Christine
  • GraceBGraceB Posts: 1,598
    edited 30. Nov -1, 00:00
    Firstly just wanted to say what a courageous and inspiring story of an incredibly brave young lady and her family!

    My immediate reaction was a petition, involve MPs and generally make as much noise about this as you can.

    If you want a petition signing just say so, I'd sign it like a shot for you and Lucy.

    Take care of yourself.
    GraceB
    Turn a negative into a positive!
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I still cant find the right words to properly reply. I'll do whatever I can, whenever I can. ((((( ))))) xxxxx DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmortonfrogmorton Posts: 25,571 ✭✭✭
    edited 30. Nov -1, 00:00
    Thank you all of you very much. If I need your help I will make sure you know it. Social media can be a mixed blessing, but in this sort of situation definitely positive :)

    I am very touched by all your kind words

    Love

    Toni xxx
    Love

    Toni xxx
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Toni, I also agree that seeing it all written down is quite humbling. Your family has been through quite a journey and there aren't really words to express how amazing I think you all are.

    Who would agree (or not agree) the funding? Is it the CCG? I concur with getting your MP on board and getting medical letters of support.

    Crowdfunding is certainly an option, especially if you know the cost.

    Can you get a second opinion also? I'd want to know what can be offered if she is turned down for funding and what other options there are, in the mean time.

    I'm in a non-similar boat, although I'm certainly not comparing my RA to Lucy's medical struggles, so please don't think this. I am battling for my jaw replacements to be funded. I'll keep you abreast of what works for me.

    Take care, Sophie x
  • ichabod6ichabod6 Posts: 963
    edited 30. Nov -1, 00:00
    I'm with you Toni.
  • Airwave!Airwave! Posts: 2,377 ✭✭
    edited 30. Nov -1, 00:00
    Toni, wishing you all well. The problems faced are immense and you all need to stay focused.

    If I were in the same position I would look at taking 'big steps', a certain billionaire and his wife (Bill Gates) want to help the world cure desease, well write to them, reach out to everyone, it may not be productive immediately but leads onto other help or ways to solve problems later. To think big, think out of the box?

    Could you set your cause up as a charity?

    Best Wishes.
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    Toni, I think you and Lucy are amazing people to have come through what you have and you know I think you are super strong people and ready to fight anything. To have this happen now when Lucy has done so well in her hairdressing course is super sh**y! The only other thing I can suggest on top of all the great idea's is go direct and write a letter to Theresa May and include a petition with the letter. I know she looks like the devil in carnet (and I love the newszoid's puppet of her!) but she's the best person to go to. Also could you get Central news involved? Let them know about the back story and what has happened now, they do seem to get results. It worked for my Mom when she got them involved in a story to do with the village she lives in. I hope you can get something done quicker as poor Lucy deserves the chance to enjoy being an 18yr old pain free.
  • frogmortonfrogmorton Posts: 25,571 ✭✭✭
    edited 30. Nov -1, 00:00
    I am sorry to have been late back in, but we've had a busy time with epilepsy clinic and Haematology clinic (leukaemia check-up)

    Oh thank you Bubba - Theresa May blimey you don't hold back do you!!

    and Airwave yes the very rich might help. I have started taking notes and writing lists. Not heard from the consultant yet with a figure so Paul will ring his sec on Friday. I think a male voice might help :?

    Thank you Ichabod (())

    Sophie it's an 'Individual Funding Request' if that helps??

    I don't think Lucy's health needs are any less serious than yours honestly I would never compete. We had good news yesterday when we saw Dr Tim - she is STILL IN REMISSION!!!!!

    Please do let us know about your jaw if you can and I really hope you get the funding.

    Must get on I am having a 'migrainy' day probably fro the stress of worrying about the leukaemia sneaking back!

    I will keep you updated

    Love and thanks

    Toni xxx
    Love

    Toni xxx
  • slomoslomo Posts: 180
    edited 30. Nov -1, 00:00
    So sorry to hear this news about Lucy, she's an amazing young woman. On a practical level, not much to add I'm afraid to what's already been said - make a noise about it, maybe one of the newspapers could do a human interest story about it and raise awareness and get folk thinking/talking about it.
    In the meantime, sending lots of positive thoughts your way, ((())) slomo
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    Hi Toni,

    I've been absent from the forum but have been thinking of you and your family many times. This is my first peek into the forum in over a year and I'm saddened to hear of your news about Lucy.

    I honestly don't know what to say to you but I know she has an amazing family who will be with her through this. She's a strong girl, like her mum!

    Take care

    Magenta x
  • NumptydumptyNumptydumpty Posts: 6,494
    edited 30. Nov -1, 00:00
    You could try 38 degrees or SumOfUs
    Good luck Toni, we are all behind you
    Numpty x
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Wooooohooooo for remission! :D
    I had a good read about individual funding requests. Have you had a look? If you haven't already, it might be helpful for you to get an idea of what they are asking for. I can see the funding would come from the CCG, so it might be good to get ahead of the game and find out who heads this up.

    Is the consultant going to go ahead and put a request in anyway? From looking at the forms that he will need to do, it's quite specific to each individual and their medical needs, so Lucy may very well have a fighting chance due to her complex health history.
  • ScampdogScampdog Posts: 43
    edited 30. Nov -1, 00:00
    Here's me moaning about my stupid hand and I read this about an amazing young lady called Lucy !, puts me in my place cant do much or offer much either but thinking about you and sending (((()))) heart goes out to you and yours Lucy you are amazing hope life can just get better for you Xxxxxxxxxxxxxxxxxx
  • frogmortonfrogmorton Posts: 25,571 ✭✭✭
    edited 30. Nov -1, 00:00
    Aw thank you all.

    Scampdog no need to minimise your own pain Lucy is just playing the hand she's been dealt as you are.

    BUT thank you so much I really hope life does get a bit easier for her soon I am sure all the thoughts and prayers as well as lit candle from all my arthritiscare friends got her through the actual cancer so please do think of her.

    Sophie I think he is going ahead with the request. My husband has telephoned the sec daily since Friday to find out 'how much'!

    Now you just gave me an idea there....as far as who head up the CCG.

    Numpty bless you good ideas there I think I may have to print this thread off.

    Magenta!! Lovely to see your name and know you still think of us thank you so much ((()))

    Slomo thank you and Lucy is going to do some publicity for the teenage cancer trust so who knows?? Once she is 'out there' we could do our bit on the back of that.

    Thank you again everyone

    Love

    Toni xxx
    Love

    Toni xxx
  • bubblesbubbles Posts: 6,508
    edited 30. Nov -1, 00:00
    Toni I have promised to read through your post and finally have done so. Lucy is an inspiration and a credit, you have all been through so much more than most people would envisage in a lifetime.
    I feel that there will be a positive outcome, I don't know why, I just have a feeling. Prayers and asking for help will bring nothing but good. My late Father always said, "expect a miracle", they don't always come as we would expect them, but they do happen.

    Anything that you need us to do, to support, to write to, to make our voices heard long and loud, we will do, so that Lucy can have the necessary surgery and go on to great things in life. She has already conquered mountains, now we just have to get through this red tape. All our love XXX Aidan
    XX Aidan (still known as Bubbles).
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    Hi Toni, you and Lucy have been through a lot so big hugs to you.

    CCG's are massively strapped for funding at the moment no matter what our beloved government says. Many are opting for the if it isn't in the NICE guidelines it isn't happening stance and we are witnessing a reduction in pioneering treatments as a result.

    In any argument at the moment a CCG would I'm afraid not really be considering the patient but more the value for money. This treatment vs the cost of keeping the patient on the current regime if the outcomes are similar in terms of cost over lifetime. Quality of life is not really a consideration at the moment.

    Any approach to panel would need to show the above and have a strong and proven evidence base for an ordinary CCG to fund.

    If you are in an area where there is a teaching hospital they may be more receptive or are there any hospitals where this procedure is being trialled as you have the right to be referred to a hospital of your choice.

    Best wishes xxxxx
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