A Difficult Decision.
Since 2007 when Penny first got diagnosed with Scleroderma & Pulmonary Fibrosis we have all seen many changes. Not only in her health, her abilities, her strength and her attitude but also in ourselves .Things that once seemed important no longer seem to matter, whilst things we may have taken for granted are now cherished.
Just lately every single moment is cherished as change occurs almost daily. As many of you know since Spring last year Penny has been battling recurring chest infections. The drug she was using (Rituximab) acted as an immune system represent, leaving her susceptible to anything and everything. She was often run down and exhausted with little energy to do anything. Since the start of the year she has become more reliant on oxygen; going from using her concentrator only when speaking to needing it all the time. A bigger, more powerful concentrator was installed but the doctors soon insisted on liquid oxygen and doubling the strength of the concentrator by running two machines side by side. Stairs became impossible so a stairlift was installed at home. Despite all this extra help Penny was still finding it difficult to perform simple tasks like getting dressed. Her blood oxygen levels would drop dangerously low whenever she moved or even coughed and it would take a worrying amount of time for them to recover. As a guide a normal blood oxygen reading is between 95-100% , anything below 90 is considered low. 80 and under is described medically as ‘very severe’. Penny’s readings were often in the low 70’s.
For a long time we have all been slightly guilty of burying our head in the sand; silently hoping that if we didn’t acknowledge these things and clung onto hope that they would all go away and Penny would get better. As romantic a thought that is…the time has come to admit that Penny isn’t going to get better. We’ve now reached a stage where some unpleasant conversations are going to have to take place.
We have decided to donate the money raised for Penny’s treatment to the two charities that have been so supportive to us and so many others trying to cope with Scleroderma & Pulmonary Fibrosis. Today we have sent cheques - £8000 to The Pulmonary Fibrosis Trust and £5000 to The Scleroderma Society. Both charities offer a lifeline for sufferers and families of sufferers, the former being able to provide grants for vital equipment to sufferers of Pulmonary Fibrosis. We have also packaged up and sent off Penny’s original Portable Oxygen Concentrator (the very item that started this whole venture in the first place!) to The Pulmonary Fibrosis Trust who will ensure it will go to somebody who needs that lifeline.
Although in our last blog we talked about the possibility of Penny being reconsidered for a Rituximab infusion in January the likelihood in all reality is slim to non-existent. Even if she were approved she wouldn’t be able to make it to hospital for the treatment. Very recently Penny & Nick have made a joint decision that getting up everyday was causing too much distress and exhaustion, so for her own sake Penny now stays in her own bed where she is comfortable and stable. Nick stays by her side whilst she is awake; chatting with her, bringing her meals and begrudgingly sitting through Strictly Come Dancing!
The decision to donate the money wasn’t one we have taken lightly but we have to face up to reality. The money donated will undoubtedly change someone’s life, someone who might find themselves in a similar situation to what we were five years ago. If we’ve achieved one thing throughout this whole adventure its a renewed faith in humanity, now its our turn to repay that.
We’ve thanked and thanked and thanked you all in the past and without meaning to sound like a broken record…thank you. Without your support we wouldn’t have achieved any of this. Life might have thrown a massive basket of lemons at us but with your help we made the best tasting lemonade in the world.
Penny’s Fund WILL continue. We would still like to do some fundraising for the two charities mentioned previously, they don’t get a lot of financial help due to the rare nature of the illnesses but a little makes a massive difference to them. We have things in the pipeline for 2013 which we have already started talking about but, obviously, a lot depends on Penny’s health. The family’s main concern is to keep her out of hospital. She has her wishes and to remain at home, surrounded by her loved ones is paramount.
We hope you can all understand the reasons behind the choices made; it was always important to us that we gave something back and now seems the right time to do that.
Its thanks to you that we can give back more than we ever imagined possible.