Alice's story is written by Viks. Her family will write another one when things have calmed down for them all.
Alice first started receiving post as her sister, Milly, has been a Pal for a year. Alice has her own health problems though.
Alice started loosing a lot of weight which caused concern. As a type 1 diabetic, her sugar levels were out of control and she started having hypo's during the night which was very scary for everyone involved. The weight loss continued and she started to feel really ill. Next she developed a bad itch all over and would scratch and scratch until she bled as it wouldn't go away. She also has enlarged lymph nodes and anxiety which made going to school difficult.
Alice's family took her to various doctors which dragged on for months, and faced with the prospect of another long wait for a biopsy of the lymph node, they decided to see a consultant privately. He carried out a blood test, chest X ray and a scan before delivering the terrible news that Alice had a form of cancer called Hodgkins Lymphoma. He said that it has spread beyond the initial stages as shadows showed up all over her chest Xray. He sent her home for the night with the instructions to be admitted to Manchester Children’s Hospital the next day (Saturday) for more tests and then to start chemotherapy.
Alice is a lovely girl, if you have ever written to her and Milly then chances are you have received a thank you card. She also writes to other children on Post Pals.
Hodgkins Lymphoma carries a good prognosis; however it is going to be a difficult journey for them all, especially as Milly is treated at a different hospital.
Update 1st April 2008
Can't believe that another month has gone by! We have had a mixed month with Alice. Some very good periods and some not so good. Her diabetes is giving us major problems and we have been on I.V. insulin as we just couldn't get her levels under control. Steroids are causing some major moods - or is it just pre-teens?! She is tolerating chemo fairly well, sickness now under control, but is suffering with bad leg and back aches. Last Wednesday she was back in with a line infection but thankfully no temperature with it, we've been lucky to see antibiotics working already. Due to the relationship with our local hospital, we have to travel to Manchester for all diabetes and oncology care in-between our stays. This is proving to be very tiring as the 180 mile round trip takes anywhere up to a few hours each way due to the horrendous traffic. It is the 'norm' for us to spend all day at the hospital and leave after tea - I could make the drive with my eyes shut! We are having to wake every few hours through the night to test her levels as she is so all over the spot that her BMs are 20-odd one minute and 2.3 the next!
Alice is doing the 'Race for Life' with a group of friends (plus us parents) soon.
Next week, our favourite GOSH nurse is arriving for a week to help us out - no mentions of name, but we love her to bits and will be very pleased to see her!
Huge apologies, but I've been absolutely hopeless with keeping track of who sent what and when. Rest assured that Alice is always thrilled to receive anything and I will reprimand myself and try better next month with 'list keeping'. I did manage to 'check in' letters from Claudia & Jules, cards from Helen & Jenn, a lovely Easter bunny from Martin, Jackie & Jamie, a 'tangle toy' from 'The Training Shop' (Mum likes that) and a lovely package from the Burnetts in Jacksonville, FL who sent some beautiful beaded book marks with notes from Brianna, Millie, Emma, Ruth, Catherine and Jazmin - thank you girls! Alice also enjoys receiving lots of e-cards, from Linda and particularly from Marie in Scotland.
Well, on with another month. We will be having a PET scan and CT on the 14th so will know more how she is responding to treatment then. Fingers crossed we can stick with the chemo and won't need the radiotherapy, but we'll cross that bridge when we come to it.
Update 27th February 2008
Alice is feeling pretty low at the moment, which is probably due to a combination of shock and drugs! The Vincristine she is on is making her sick and we have upped the anti-sickness drugs to try and combat that. She is having her hair cut short this week - losing her hair is the one thing that is really bothering her. She is clingier than ever and follows me everywhere, assuming she is awake! The post arriving really does provide a welcome distraction and we're also grateful for the space our friends have given us now we are home for a bit.
SPECIAL THANKS to Julie, Joe & Sam for all the craft stuff, Joyce at E J Crafts in Ulverston for the card making stuff, our angel in Spain - Claudia for all her lovely gifts, especially the glow teddy, Colette who has just found Post Pals, Leila for sending her first signed novel to Alice, Anna Mae for the lovely necklace and finally, Kate Dee who will always have a place in our hearts. Kate sent Milly a Bratz balloon when she was in hospital and last week a huge box arrived on the ward with a fabulous unicorn balloon for Alice - it brought a lump to my throat - thank you Kate. Alice also received some lovely cards from Julie, Annie, Debbie & Louise, Sarah and Becky Butler. Singing e-cards from Marie brought smiles and finally, emails from Sera & Liberty, Marie, Erin F's family and Hannah-Lou. I hope that I haven't forgotten anyone as the original list I did in hospital went AWOL!
We are fortunate to have lots of family and friends around us, which makes everything so much more bearable. We feel stronger for what we have already experienced with Milly, and the support from the big charities such as 'Over the Wall', 'Jeans for Genes' and 'Great Ormond Street Hospital' (fund-raising dept) has been deeply appreciated. We have built special relationships with these charities over the years and feel we know them well, as they do us. Our commitment to continue raising awareness and / or money for them is stronger than ever, and I still intend to pull on my boots to raise money for GOSH in Peru later this year. The last but not least mention of course goes to Post Pals themselves, particularly Viks. You're a star - thanks for being on the end of a phone at 3am!!!
Update 24th February 2008
Alice is doing well but seems to spend all day sleeping. She is feeling a bit sick, but not being sick, which is good. Her mouth and throat is now starting to hurt. We are hoping to be home for Tuesday for a few days and then it starts to become a bit 'in and out' from what I can gauge. She is being really good and always has a smile for the nurses. We are doing an initial 4 months of chemo cycles and then they reassess and see where we are.
We have had lots and lots of post which has really helped in keeping that smile going. I did start a list which has gone AWOL (but it will be around somewhere) - it is a little like living in a caravan, but with no cupboards. Kate Dee sent a huge unicorn balloon which is floating above her bed and we have had lots of teddies (all lying on the bed with her) plus lots of cards (all stuck on the wall). A little girl called Grace sent both girls a lovely picture and letter and she'd been out to buy some craft things for them to do - she is only 4! Pal Erin F's family have sent things and I received a lovely letter from Jeff (the grandfather). I will get a proper list done and as always, we will get some thankyou's done when we get a minute.
Update 21st February 2008
Treatment is going ok, how ever it is causing problems with her diabetes.
Thank you for all the lovely postie being sent.
Update 13th February 2008
Alice had a hickman line put in, but they were unable to get the lump out. Thank you for the Chemoduck now named "Danny". Chemo starts on Tuesday.
Update 11th February 2008
Alice’s family were told today that the cancer has not spread beyond the neck and chest, so the outlook is good. She is going down to theatre on Wednesday to have a lump removed, bone marrow biopsy and a hickman line put in. She starts chemotherapy on Monday.
Thank you to Barbara for dropping off the quilts while Alice was having a CT scan, she is curled up under it at the moment as it’s really lovely!
