Make-A-Wish Foundation UK

I was emailed this week by Hayley Epps from the Make-A-Wish Foundation UK .

It seemed fate that she emailed me at this time as I had just recently applied to this Charity on behalf of my son Jack.

Hayley was reaching out to Bloggers for the first time and made a special request on behalf of a family whose child, May, had a wish granted. This is their story:

Back in the summer of 2010 Make-A-Wish UK granted the wish of five year old May who was fighting a rare cancer called Rhabdomyosarcoma – she wished to be a princess for the day. Sadly May passed away just a couple of months after her wish, two years ago today, on 31^st August 2010.

May’s family have been involved with Make-A-Wish ever since, raising as much money as they can to ensure that other families going through the same awful experience can have their wish. May’s Dad, Neil, has made this short video and would like as many people as possible to watch it and support Make-A-Wish:

http://www.youtube.com/watch?v=MfkiRwWgGwQ

It's only a minute or so long, so please watch the video if you have a moment to spare. And if you could share it with as many people as you can it would mean so much to Neil and his family. If you are able to make a donation too, to help grant a wish to another child like May, you can ‘Remember May’ at www.justgiving.com/RememberMay.

Please pass this video on via your Blog, Facebook, Google+ or Twitter using the hashtag #RememberMay and the shortened link: http://ow.ly/dmUzN.

You can make a difference to a child like Jack who is battling a life shortening condition.

Thank you

Could you do it, if it was asked of you?

Jack finally has his new button peg. He didn't get it done in Edinburgh after all as it turned out to be too big so they had to order another one, have it sent to the house and I put it in myself. So now 11 months on, we have come full circle.

Finally.....a cute little button peg

We, as a family, have been through so much in those 11 months. Holly and I have been separated for the first time in a crisis and that was so so hard as she is my rock and I am hers.

Jack suffered two episodes where he had over a hundred seizures in one day, had aspiration pneumonia twice, oesophagitis, gastritis, suffered endless pain, was covered in bruises after thrashing around in agony, numerous operations, endless needles and drips, was rushed to HDU 4 times and stopped breathing so many times, that I lost count. Add to that a broken leg and 3 months in plaster and it's enough to turn anyone into a raging alcoholic!

After the first episode in Edinburgh, Jack's Neurologist gently brought up the subject of filling in a CYPADM form. This is a form which the parents fill in, with the help of the child's specialist, to record their wishes should an acute deterioration happen again. I said that I would definitely think about it and they informed Rachel House (children's Hospice) that I was open to discussion but when I was there we never got around to it.

After this second episode of acute deterioration the subject was gently brought up again but this time they put the discussion into action. I was introduced to the palliative care nurse Katrina and we went somewhere private, along with Michelle (epilepsy nurse) and she very gently explained what these forms were and why it was important for me to fill them in. There were lots of tears as I tried hard to be brave but I truly felt that my heart was breaking. I didn't want to deal with this on top of everything else I had coped with but I knew that it was the right thing to do. I was given the forms to take away to look over and we would fill them in together the week after.

Jack, at one of his lowest points.....not a well boy.

I was due to go home and see Holly that day so for most of the time I was away, I refused to look at the forms but then it was time to go back to the hospital so I broached the subject of them with Holly and I explained what they were for. We cried lots of tears but together we made decisions on what we would want for Jack if we were faced with this again.

The day after I got back, Granny Mac and I had nipped up town along with Jack's key worker, Helen, from Rachel House. She was there to give me some support and as it was a sunny day, we took off for an hour. We hadn't gone far when I got a phone call from the ward saying that the Neurologist wanted to meet with me at 2.30pm re this first form so we took a taxi back to the hospital. I felt sick. Granny Mac and Helen went to a nearby café while I went back to the ward. I sat there for an hour before they came and by then I could feel myself shaking and I couldn't get warm.

The CYPADM form has only two sides to it so you would think that it wouldn't take long to fill in but it did. Both Ailsa (neurologist) and Celia (epilepsy nurse) gently explained what this form meant, that it was a record of my wishes at this time but could be changed in the future and that it would be sent to all the health authorities involved in Jack's care, Rachel House, respite and Jack had to have this form with him at all times.

They went over what full resuscitation meant, at my request, so that I was sure that I knew what was involved and then I had to tick the intervention that I wanted medical staff to take and anything else was scored out. I also had to decide what to do if we were in an ambulance and he was unlikely to survive the journey. Did I want to take him home or go to the hospital? If he was in hospital and there was nothing more they could do, did I want to take him home or go to Rachel House if it were nearer?

There were tears but not many cos I was holding myself together by sheer will and when I finally walked out of there, I was drained.

I headed back to meet Granny Mac and Helen. When I arrived Granny Mac was distraught as I had been away over two hours. She kept saying that she should have been with me but I had wanted to do this alone because I couldn't take her feelings into consideration in this. I had to do what was right for Jack.

A few days later, Katrina (palliative care nurse) and Celia (epilepsy nurse) came to get me to fill in the final form. This form was a hell of a lot harder to deal with. You had to say what would happen if Jack was at home and the end was close. Who you wanted there, who you nominated to let everyone know what was happening, which funeral company you wanted to use right down to what went in the coffin with him. As hard as the form was, it also focused on the kind of life I wanted for Jack whilst he was still with us and how we could achieve it. Again there were tears and at times I struggled to speak but we got there in the end.

I left that room wanting to be anywhere else but in that hospital so I grabbed Granny Mac and left. We headed out for lunch but to be honest, the last thing I wanted was to eat but I went through the motions cos that's what you do. Afterwards, heading back to the hospital, I told granny Mac I wasn't going back, that I needed to get away. I didn't know where I was going, I was just going to walk.

I just couldn't go back into that ward and play with Jack after what I had just done, it didn't seem right. He would have known that I was distraught and I didn't want him to see me like that. It also felt wrong somehow to be making these decisions at a time when he was so well!

Jack, well and looking good

I cried all the way into Edinburgh city centre but I felt a little calmer after I had walked a while.

I wandered aimlessly for a few hours and was accosted by a young charity collector for Unicef. I told him that I seriously didn't have any money cos it was costing me a fortune to stay at the hospital, that I already supported Unicef and tried to get away. He must have sensed how distraught I was cos he opened his arms and said "Do you want a hug?". I just stood and looked at him, then walked into his arms. It was the most surreal moment I have had in a long time. He held me for what seemed like ages, then he stepped back, wished me luck and let me go.

I will never forget the kindness of that man. I felt a little better after and then I walked some more. I ended up in the Chocolate Lounge at Harvey Nichols department store, where I had the biggest piece of carrot cake I had seen in a while and a huge mug of hot chocolate. Comfort food if ever there was such a thing.

Pic from here along with recipe

I arrived back in the ward around 6.30pm after being awol for over 6 hours to be met by a worried and slightly frantic Granny Mac.

The next day, I met Celia in the corridor and she said "I think we broke you yesterday". I just nodded cos that was the understatement of the bloody year!

That was February. In July, we had a visit from the chaplain from Rachel House. Those of you who know me well, will know that I am more spiritual than religious. I get on brilliantly with this chaplain because he doesn't preach to me, he accepts me for who I am.

We discussed these forms that I had filled in and I broke down again while telling him what mine and Holly's wishes were for Jack and you know what he said?

He said that in order to make those decisions you have to love someone unconditionally and that means putting your own feelings aside and thinking of only them. It made me feel slightly better.

Whatever it is, it was one of the hardest things I have ever had to do.

Ten months on....

The summer has passed in a blur and Olympic fever has definitely gripped the nation.

I am loving the games and I hadn't realised just how competitive I was until I found myself screaming at the TV urging our athletes on. I have made Jack jump quite a few times when yelling without warning!

Poor Jack has to put up with both Holly and I jumping up and down shouting "C'MON!" at the top of our lungs. He is in respite tonight and I am sure he is glad of the peace and quiet.

Jack is doing well but he sleeps a lot, sometimes up to 15 hours a day! His seizures haven't been too bad either so I can only assume that it is a combination of being a teenager and being so active all of a sudden. It does worry me though but there is no point getting him up out of bed, just for him to sleep in his wheelchair which is giving him zero support at the moment.

Totally zonked!

His scoliosis is really obvious now and his ribs are sitting on his hip so he is slumped over to the left. I am trying everything to prop him up in the chair but nothing seems to work. I have an appointment with wheelchair services on the 16th August in the hope they can put in an insert of sorts into his chair to "prop him up" failing that they will have to order a new one and that can take up to a year to come!

I learned in February, while at Edinburgh Sick Kids that his scoliosis can't be fixed. It is so very severe but thankfully it is the lower part of his spine that is twisted and therefore it is not pushing against his lungs. Small comfort let me tell you. They could operate but they would only be able to improve his spine by 60%.

You can see how little support his chair is giving him

They are not willing to take the chance though because a) he has a VNS fitted which means they can't use Diathermy (for treatment of healing and pain) during surgery and if they did, it would "fry" his vagus nerve and b) after his two episodes of aspiration pneumonia only weeks apart it was felt that even without the VNS his breathing would become compromised during the long hours (10 at least) of surgery.

I was absolutely distraught so much so that the nurse offered to take Jack back to the ward to give me time to take it all in. I couldn't stop crying and Granny Mac was equally upset.

The surgeon told me that once he was 18 and had stopped growing, he would need a really good moulded wheelchair. He also said that Jack's spine would become fixed and his ribs would permanently sit on his hip and that he would require pain relief.

you see what I mean?

The good news was that his spine was already at that point so it had nowhere else to go so wouldn't actually get any worse! This was little comfort but once I calmed down I realised that I was breathing a sigh of relief. The decision about his back had been taken out of my hands so I never had to sit through 10 hours plus of surgery wondering if he was going to pull through or not. Holly was equally relieved when I told her but upset at the same time. We are so alike.

This news came at the end of the 4 months Jack had spent in hospital and it was a cruel blow. Since then there have been lots more dramas, mostly to do with a broken leg and with his feeding tube falling apart, cancelled operations, then having the operation and getting home.

When we arrived at the hospital the 2nd time for Jack's fundoplication, it all looked good and I was hopeful that the stress of the last few months would soon be over but the next day, the operation was cancelled again! I couldn't believe it. They suggested we go home and come back a few days later but with tears  streaming down my face I stood my ground and refused to go home as his feeding tube was constantly falling apart.

The irony was that I had fixed it the day before we went to hospital and it was still looking semi decent. Granny Mac and I went for a coffee and whilst there I told her that the only way to make this operation happen was to "unfix it". I could not go home worrying that the only means of getting any kind of nutrition into him could pack up at any moment. It was too much after everything else I had dealt with.

That was the on the Wednesday. By Sunday his tube had come so far out of his body and was held together by sticky tape.I knew that it couldn't possibly be in the right place now and then it started leaking feed that afternoon, totally packing up in the early hours of Monday morning.

This is how bad it was the day before the op

Jack had his op that day and spent the night in intensive care. The surgeon told me that I had been correct and the tube was no longer in his stomach instead it had become enbedded in his stomach wall and had to be cut out. It still wasn't a button peg but we were a step closer.

comfortable after his operation

We got home 8 days later at 5pm, in time for the carer coming in. Marion was delighted to see us and I was glad of a small breather after driving for 4 hours.

Three hours later, Marion and I were putting Jack's meds through his tube when it became blocked. We tried everything to budge it, to no avail.

I called Edinburgh in a total panic, they told me what to do, then told me to call back. I did everything the nurse said and more but no it wasn't budging. Holly called Granny Mac and we spent a further 20 mins trying to unblock it with me lurching between tears and total calm. Eventually we took him up to the local Children's ward where they spent until 3am trying to unblock it. Meanwhile Jack, who thankfully slept through it all, was  stuck with needles everywhere as they desperately tried to find a vein to support fluids.

I was totally inconsolable as they said we would have to go back to Edinburgh or back to Aberdeen. Had we not had enough? Could I not spend an evening at home without some major drama unfolding? Why couldn't anything just be straightforward?

Thankfully Marion, Granny Mac and Lynette the overnight carer were very supportive, as were the nurses. Marion made me endless cups of tea which she was allowed to take into the treatment room which is unheard of....that's how distraught I was!

I fell into bed at 3am once they got Jack into bed. I was worn out.

The next day, a lovely doctor tried as well to unblock the peg with no luck. He said that he should be able to just take this one out and put a new one in but I suggested he check with the surgeon in Edinburgh first.

By 2pm, he had all the information he needed and he took the blocked peg out and fitted a new one. Turned out that the calcium they had prescribed to help his leg heal (which was still in bloody plaster 3 months on!) had hardened in the tube and that was why we couldn't fix it. I had to be so so careful from now on, giving it to him separately so it didn't attach to the other meds. STRESS!!!

We went home and all was well for a few days but then the tube wasn't making a firm enough connection to the feed pump so I had to tape it on every time Jack was fed. Then the lid of the opening started to fall apart and my stress levels were high once more! Luckily Alba (respite) came to my rescue and they found an attachment which hasn't moved since. I could have kissed them!

Tomorrow, 10 months after all the drama started, Jack will finally have come full circle when we get a button peg put back in. You have no idea how happy this makes me. I wont believe it though, til it is in situ!

From there we will go to Rachel House Children's Hospice for us all to have some well earned TLC.  I am sooooooo looking forward to that.