Our Pal - Kerry F

Story written 2008

Kerry was diagnosed with a malignant brain tumour in august 2007. She had to have an operation which lasted 12 hours. Unfortunately she ended up with a condition called poste fossa which only happens to 8% of children who have tumour removed. She also has a shunt in which helps to drain the fluid as she had a large pressure build up as a result of the tumour. She is now in a wheelchair which she finds frustrating because her sisters are running around outside with their friends but she still manages to smile.

She has such determination. So far she has had 3 months of chemo, followed by 6 weeks of radiotherapy, and now she is on more chemo until July. She was in hospital for 6 months following her operation and made friends with many of the nurses.

Kerry has to have regular MRI scans but at the moment she is in remission. She will need a lot of rehabilitation to help to regain some of her abilities. She has not been to school since July 2007.

Please include your address when you write as Kerry would like to reply when possible.

Update 29th March 2013

Kerry is now moving on from Post Pals. Thank you for sending Kerry and her sisters post over the years and we wish her well.

Update 9th February 2012

It has been a poorly time in our household with chest infections/colds going round and it’s the second time Kerry’s sisters have also been hit badly this year with it. They have been at home off school for 3 weeks now and are getting bored so cards or letters to the girls would be great! I (mum) have now got a chest infection as well as we all suffer from asthma. I can’t understand it because it was colder last year and we weren’t as ill!

The cards and letters still mean as much to the girls as they did when we first signed up to Post Pals. When the post hits the mat, the girls all still charge to the door, so thank you.

Update 7th August 2011

Kerry is good at present. She is still staying strong on her walker and hates the wheelchair and will only sit in it at meal times. She does get tired on her walker but this does not stop her. She remembers being able to walk and run and wants to again.

We tried to take her out in the wheelchair one day so she could see more, but she was unhappy the whole time so I don’t think I am going to try that again for a while. We’re very limited to what we can do with the walker though as a family because Kerry tires easily. Her sisters get frustrated not been able to go far or do things other families can do.

Update March 2011

Kerry has to start growth hormones and steroid medication long term. She also has surgery on her spine in May which I fear.

We are going to have a special Easter together. Thank you for the nice journal Kerry recently received too.

Update 17th January 2011

Sorry I have not updated as I have been ill myself recently.

Just to let you know that Kerry is good. She has gone back to school after having a cold.

Unfortunately she needs more surgery on her spine in May/June time.

Thanks for the cards and gifts before Christmas, especially the Sylvanian families, ballet mosaic, cats paint by numbers, light and a few others.

Update 28th November 2010

Kerry is doing well at moment but gets tired easily.

She has great news though – she is going to be Mary in the nativity play at school.

Update 1st October 2010

Kerry is good at the moment. We are still having some reflux issues though which is unpleasant for her.

Thanks for lovely red dog, bracelets and lovely gift box we received recently that had lots of little gifts that the girls shared amongst the 3 of them. Kerry’s sisters are enjoying having pen pals too.

Update 4th July 2010

Kerry is good at present and looking forward to doing her play at school which is Charlie and the chocolate factory.

There is no need for a lumbar puncture at the moment as Kerry is currently stronger on the walker.

We are going to a 4th July celebration today – it’s a street party so the girls are busy baking cupcakes.

Thank you for necklace with starfish this month and thank you for lovely fairy set. Kerry’s sister really liked this as well.

Update 1st June 2010

Kerry’s arm and leg have deteriorated recently which means she does not get on her practice walker as much. She has also been very tired. So far the doctors have done a scan but cannot see anything different on there. We are monitoring the situation before the doctors do any more tests. Sometimes with the body been so complicated they cannot always get the answers. They may do a lumbar puncture on the spine to see why motor skills are not so effective. We are hoping it is a blip and she will come through in time. Since Kerry has not been as strong on her walker, she has been very low about being in a wheelchair and wants to walk again like she used to. She still remembers being able to walk and run. Kerry would like some more friends to come to her house because she misses her old friends from school.

I have updated the girls’ interests (see info box above) and Kerry is sitting with me now and insists that I write ‘walking’ for interests.

Update June 2010

Kerry has rejoined Post Pals.

Update 24th October 2009

Kerry had a 14 hour spinal fusion operation and is now recovering. Once again she has been very brave indeed – braver than mum would have been. She now has to do head exercises everyday to help and strengthen her neck muscles. It is just another part of Kerry’s journey.

Update 28th September 2009

Kerry is going in to hospital for major spinal surgery this week. Lots of prayers are needed this week and cards would be appreciated.

Update 27th July 2009

Kerry is well at the moment and looking forward to going to special school in September that mum and dad have fought for for over a year. Hopefully she will get a chance to do hydrotherapy, which she has talked about for a long time, because she used to love swimming before this happened to her, but unfortunately she cannot go into normal pools because it is to cold for her circulation.

On the down side, Kerry now has a kink in the top of her spine (may be a result of radiation damage) that is going to need major surgery in the future, otherwise she will be unable to keep her neck up and she will lose quality of life. We are going to Great Ormond Street in September to see a consultant regarding this latest problem.

I’m sorry i have not updated but we have been up to our eyes in a tribunal for special school which has now finished. The letters and cards still mean a lot to Kerry.

Update 5th April 2009

Kerry has returned part time to her mainstream school she attended before her operation. She is finding the pace and the setting too difficult so mum and dad are working hard to get her into a special school so she can gain all the therapies she needs. So far we have not achieved this because LEA are making it as difficult as possible.

We all continue to try and get her to Tadworth because her consultant feels this is the way ahead but we are still being turned down for that by the PCT. Unfortunately, there may also be another operation on the horizon (on her neck) due to a thickening.

On the positive side, she likes to go on her practice walker and still has a sense of humour despite all she has been through.

Sorry Kerry does not get much time to reply to letters but she still loves to receive them and Post Pals is still a very big part of her life. Thank you for the birthday gifts the girls received too.

Unfortunately, Kerry has not kept any of her friends since she became ill and does not have a chance to meet children like herself because she is not at a special school and there is nothing for her in the community where she lives.

Update 1st November 2008

Kerry has now had some complications with thyroid as a result of radiation treatment. This is making her very tired. She has also been sicker since been on the mediation prescribed. She is hoping to go to school for 2 hours for a couple of mornings but at the moment I do not know how she is going to cope with this.

Kerry is now becoming much more aware of what has happened to her – and is getting more upset about not been able to go upstairs with her sisters to play. She is beginning to miss the freedom she once had when she was able-bodied and gets down about it sometimes. She is also aware that she forgets things sometimes and that she is unable to write as well as she used to.

Kerry needs a lot of cheering up at the moment, so lots of cards would be appreciated at present. Post Pals is such a big part of Kerry’s life now – she has a special box where she keeps all the letters and cards she has been sent.

I hope as a mum that Kerry becomes stronger one day because some days I feel heart broken seeing her sitting in the chair compared to what she used to be like. She used to have so much love and energy for life. She is worried about going back to school because she feels the children will not treat her the same.

I also feel disappointed she was turned down by the PCT for the Tadworth Trust because I feel it would have helped her so much.

Update 31st August 2008

Kerry finished her chemo last month, but unfortunately we were not able to get to Disneyland Paris because Kerry became neutropenic again and is still very tired. We did not feel she would enjoy the trip when she was so tired. However, she did have a ride out one day on her trike which she enjoyed, but we have not had many sunny days to get out as much as we would have liked over the summer. Her sisters are back to on school on Tuesday.

We have another scan in the middle of September, so wish us luck.

Kerry is currently learning to write again. She is my little star. Thank you for Kerry’s post, receiving letters gives Kerry a lot of joy.

Update 31st July 2008

Kerry has been in hospital several times this month with a temperature. Her chemo was delayed by a week due to this, but last Saturday Kerry had her last chemo session (26th July 2008) which is the end of her treatment. Her scan showed some thickening near the brain lining where she had her operation and she still needs a lot of physio to try and build her muscles up.

At the moment she is happy and well and as a family those are the times we look forward to when she is her cheeky self and full of mischief.

We are going to try and get to Disney in Paris in September as we have never been before and the girls have always wanted to go.

Thank you for all cards and letters this month. They really bring joy into Kerry’s life. Are there any sisters out there who would like to write to Kerry’s sisters? Sometimes they feel left out when Kerry receives mail. Thank you for the lovely painting set, dr who set, and lots of lovely stickers and snick snacks.

I think Post Pals is a lovely idea and we have had some lovely letters during some very difficult times.

Update 1st June 2008

A big thank you to Jane for her nice letter about her poodles and to Laura H for the cuddly dog that actually barks – Kerry loves it.

Kerry had chemo on Monday and Friday last week, and may need blood transfusions on Saturday as she is now low on counts. So at present she is tired but still manages to smile and have a laugh. She is currently waiting for an MRI scan that is due.

Kerry loves opening her post; it brings joy to her life when she has been through so much. She often talks about walking and asks what it feels like to stand up. She used to love her ballet classes before her operation.