anna's blog

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

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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Transformation

Anna’s new wheelchair has transformed her life. In just one month, it has done everything I had hoped for and more. Anna is moving independently, exploring, chasing, laughing, spinning and just generally engaging with life. She is no longer a small girl in a wheelchair waiting to be moved around but instead an assertive, demanding inquisitive and fun seeking four year old.

On her first day at nursery with the snapdragon wheelchair (snappie) the staff asked if I’d brought a different girl as the change in her was so noticeable.

The past month has been filled with new experiences such as playing in the snow, chasing and catching her brother, playing football, eating at the right height at the table, holding hands when walking with mummy, picking her dolls up from the floor, dancing, … all things we take for granted but, up until now, just impossible for Anna.

It does mean putting it in and taking it out of the car every journey but it’s worth it to give her maximum independence. However, it is quite hard work, especially doing it maybe 3 or 4 times a day, so the sooner we get a wheelchair accessible vehicle, the better. Then Anna can be like any other child, and get herself in and out of the car in her snappie. It will involve an electronic lift in the car and an internal docking station but I have no worries as Nathan has already decided all that ‘boy toy’ stuff is his job.

Anna smiles and laughs so much more of the time. It’s just amazing to see and, as her mother, feels wonderful.

I cannot say enough thanks to everyone who helped us to give Anna her new snappie. You have changed our lives.

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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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