anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Journey and arrival

It was a long journey on Saturday – check-in was at 7 AM and we finally arrived at Give Kids The World (GKTW) village around 5 PM local time (10 PM Scotland time). Travelling with a child with additional needs means everyone knows who you are and is ready to help and support you at every stage. From the minute we arrived at Glasgow airport right through to final destination, we were well looked after. We were paged at the same time as the flight was called and everyone greeted us by name from then onwards – at the gate, baggage handlers and cabin staff. The Virgin Atlantic crew were absolutely amazing, checking we were all ok throughout the flight, bringing special treats for Anna and Nathan, helping as much as they could with getting Anna to/from the incredibly small airplane toilets, organising a captain’s announcement to the whole plane about Anna’s wish trip and bringing us some of the perks of first class (even though we weren’t sitting there) such as a gorgeous miniature tiered tower of cakes. We met not just the captain but the entire crew!

Anna’s snapdragon wheelchair survived it’s first plane flight with lots of comments from fellow passengers, airport staff and small children (especially boys) about how they’d never seen anything like it before and how cool it was!imageimageimage
The GKTW village is amazing – it’s really hard to describe how welcoming everyone is to Anna (known as ‘the wish child’) and us, her family. However we have already had to address some misconceptions from some of the local volunteers – namely German is not the native language in Scotland, my 21yr old sister Heather is not 28 years old (she was horrified) nor the mother of Anna and Nathan, I am not their grandmother and Mary Poppins is an English nanny character not a disney princess. Other than that, all is well.

The gift fairy comes ever day when we are out and leaves presents for the children. Anna and Nathan both have chosen their pillow of dreams and Anna’s wish star now rests with over 100,000 others on the ceiling in the castle of miracles. Taxis are organised to take us to and from the parks each day and there are activities and events in the mornings and evenings such as character visits, a pool party, Halloween event (tonight) and Christmas celebrations (they try and cover all seasons/annual events as some children may not have the opportunity otherwise). We spent Sunday here just taking it easy after a very long day travelling – both Anna and Nathan are loving swimming- and we are off to the parks tomorrow.

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Anna’s new wheelchair

20140413-110524.jpgAnna finally has her new wheelchair. We’ve tried several times over the last year to collect it but Anna had always had either an infection or a broken bone and we’ve been unable to travel.

We went down to Cambridge on last Sunday and spent all day at Dragonmobility on Monday doing final fittings and checks.

It’s bright pink, sparkly and absolutely gorgeous!!

Thank you Dan and Lou for such an amazing chair. And thank you again to every single person who helped raise the money for this chair. The difference it has made to Anna is almost indescribable. She has mobility, independence and freedom. X

X

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2 special certificates

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Anna was awarded the ‘pupil of the month’ certificate at school last week.

An achievement for any pupil, but in Anna’s case also marks the fact that she has actually completed her first full month at school.

Her second special certificate was for today’s trip to theatre at sick kids. We were here for 8am to have bloods checked, assessment by doctor/anaesthetist and then under general anaesthetic by 10am. She had a lumbar puncture and chemotherapy injected into her spine and brain fluid.

This one is so special because it’s her last one. She has now officially had her last chemotherapy dose. She’s still on daily anti fungals and weekly antivirals.

We are spending all day at sick kids because after her theatre trip, she’s having her 4 hour pomidronate infusion (to strengthen her bones). She currently has no fractures and seems really well.

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2 different but both very significant events. I might have a small celebration tonight!
Well done, Anna.

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Hospice and Hospitals

20140224-230603.jpgWe seemed to spend most of last week in one or other of the above – both planned and unplanned visits.

We are very lucky to be supported by Rachel house Hospice, in Kinross, part of CHAS (Children’s Hospice Association Scotland) and get to go there several times a year for a short break. As the children were on holiday Monday and Tuesday last week, I booked a couple of nights from Sunday onwards.

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When we are there, I feel like I can be Anna’s Mum again instead of her nurse/physiotherapist/occupational therapist/carer etc. as everything is done for her. I get to sleep for a whole night without being woken by Anna (I’m always so tired from interrupted sleep). I don’t need to use a hoist several times a day to take her the toilet or to give her a bath. I don’t need to give her medicines – the nursing staff will make sure she has them and keep an eye on her temperature. I don’t have even have to help her with her food – she has somebody with her the whole time to look after her. And Anna just gets to be like any other five-year-old girl – doing arts and crafts, chasing people up and down the corridors, watching TV and just generally having a fantastic time. When she is doing all that, Nathan gets to chill out with Xbox or PlayStation or just spend some time alone with me. I always take a book with me as its one of the few places I get a chance to read.

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A huge thank you to CHAS and all the team who work there. It makes such a difference just knowing we can have a few days there every now and again.

Once we got back on Tuesday, we headed straight down to St John’s Hospital in Livingston to collect her new leg splints and (for the very first time!) school shoes. Because Anna isn’t weight bearing at all ie standing on her feet, there is a very real risk that the muscles in her ankle will start to contract and she will lose the ability to move her foot. The splints keep her feet as close to a 90° angle as possible so that when she can (hopefully) start to weight bear again, her feet will still go into the right position. Her new pair are pink and covered in a butterfly design – all these little aesthetic touches make it a bit easier for her.

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However, the splints are so bulky that is almost impossible to fit normal shoes over them. The orthotist agreed to order some specialist shoes and Anna is now the proud owner of black shiny patent shoes. They have to be several sizes too big to fit over the splints but even so they look fantastic!

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Wednesday was Anna’s last official intrathecal (general anaesthetic for chemotherapy to be injected into brain and spinal fluid), along with her bone marrow sample for end of leukaemia treatment. It means an early start – we have to be a sick kids in Edinburgh before 8 o’clock in the morning – and we are usually there until mid afternoon. Although officially it’s the last one, we still have one to catch up next month as she missed several because she was so ill at times. We normally try to do her 4 hour pomidronate infusion (bone strengthening treatment) on the same day, to cut down hospital visits, but we are slightly out of sync so will have to go back in a couple of weeks It’s a logistical challenge every time – making sure Nathan has someone to look after him in the morning when I take Anna in, and making sure I will be back before he comes back from school.

Anna was back at school on Thursday. I got a call mid morning asking me to come down as Anna had caught her arm under the table. For most children that wouldn’t be an issue – probably the worst that would have happened was a bit of bruising. But for Anna, who fractures without even touching things sometimes, it’s more serious. I checked her temperature before giving her some paracetamol and she insisted on finishing the day in school. Her arm continue to hurt overnight but she insisted on going to school Friday morning (golden time is so attractive!). However as it was still sore Friday afternoon, we headed into A&E at sick kids and went through the usual routine – assessment, x-ray, cast. They all know us very, very well by now. Anna has a lovely removable cast – it’s the first time we’ve seen this. It was fitted and then cut and Velcro put on so we can actually take it off for short periods if we need to. It does make a big difference. It’s on for a couple of weeks. She wasn’t keen on me taking a photo.

Mum and Mary came and took me out at the weekend and I also had a wonderful pampered chef night out on Saturday. All much needed!

Just a normal week.

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Going to school

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Anna is loving school and yesterday, for the first time ever, she travelled to school in her wheelchair in our new car.

Thank you Dragonmobility, for making such an amazing powerchair, thank you motability and Bristol Street Versa for the car, and getting it to us with all the complications along the way and thank you Mr Ryan Galloway, for your emergency mechanical expertise!

Another small but hugely significant step forward. X

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Anna’s Fund

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Anna’s Fund was launched on Nov 4 2012 to raise money to pay for specialist equipment for Anna, starting with Anna’s Dragon. We knew initially that we needed a snapdragon wheelchair and that the NHS wouldn’t fund it. We also knew that more specialist equipment would be necessary over time.

The response has been unbelievable. In just 2 months we have raised over £18,000 of the £21,477 required for The Turbo Trust to allow us to buy the wheelchair. We have another £2,000 pledged and fundraising events still to happen. I never imagined that we would be able to raise such a huge amount so quickly and have been completely overwhelmed by the generosity of family and friends as well as complete strangers.

What it means is that Anna is likely to be in a snapdragon wheelchair by January/ Feb. Dragonmobility (the wheelchair company) will loan us one while Anna’s individual chair is being built for her.

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I’m worried about starting thank yous because I’m sure I will miss people out but I can’t not mention the Linlithgow Round Table. They took on our cause, raised the profile and made an amazing difference. Thanks, guys.

And of course, all the people of Linlithgow who donated to them and also made individual donations directly to Anna’s Fund or through the just giving page. Thank you each and everyone of you.

Local groups and also those further afield have been incredibly supportive and generous. Thank you to Spar, Linlithgow Ladies Choir, The Fat Stock Group,Dundee St Peters and Paul’s RC church congregation, Springfield PS/Bonnytoun Nursery staff, pupils and parents, Dundee Helping hands ….and others that I may have missed out… Thank you.

Charities and organisations have responded positively, including Joseph Patrick Trust and Clic Sargant. Thank you.

I feel so fortunate to be part of Pampered Chef. Colleagues and friends have raised money through fundraiser cooking shows, people have offered to host cooking shows and donate the proceeds to Anna’s Fund, others are collecting donations at shows and it has also produced ‘Team Anna’ for a half marathon. You know who you are. Thank you.

The Christmas card donations have been fantastic. Thank you.

The justgiving page, set up specifically for the wheelchair fundraising to The Turbo Trust, was read worldwide and we have donations from the UK, Europe and further afield. Every single donation has helped, whether it is £5, £500 Or £5000. Thank you. Thank you. Thank you.

If I haven’t mentioned you and your fundraising efforts here, please know that I have appreciated every single donation.

I know that there are still events planned or happening at the moment – Cambridge ARU women’s rugby, Bingo nights, concerts, Burns nights, zumba event, general collections, marathons/half marathons, triathlons, sponsored events (such as impressively giving up alcohol!), … . All of these are going to help Anna’s Fund.

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Many of you have asked if we will continue fund raising for Anna’s Fund after we have enough for the wheelchair. The simple answer is yes. I am on a steep learning curve in the world of disabilities and available supports but I have realised quickly that we will usually be provided with only the minimum from the NHS to meet Anna’s medical needs. We will need to fund anything over and above what is absolutely necessary. That is not in any way to suggest that the support we receive from individuals within the NHS is anything less than excellent. It is just a budget issue.

The just giving page for The Turbo Trust was specifically to raise money for the wheelchair. We have now set up a paypal link for further donations to Anna’s Fund (for other specialist equipment) on her facebook and wordpress pages or they can be made directly by emailing annasfund@hotmail.co.uk.

Anna knows that lots of people are helping raise the money for her wheelchair. She talks about the new wheelchair a lot and is very excited about the thought of being able to go up and down in it. Nathan is also excited about getting rides on the back of it!

As for me – well, I’m exhausted, as always, but supported and looked after by so many people (thank you). And, of course, inspired by my amazing little girl and what she can achieve.

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