Our Pal - Alice P

Story written 2008

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.

Update January 2015

Milly has now turned 16 and feels it’s time to move on from Post Pals.

A big thank you to everyone who supported her and Alice over the years.

Update 12th January 2013

We are very sad to say Alice passed away today. Alice joined Post Pals many years ago as a sibling while Milly was going through multiple operations. We all remember when she first got ill and joined as a Pal the day she was diagnosed, she fought so hard and for so long. After Alice’s bucket list went viral the whole world found out how special Alice was, right until the end she was working to help others despite what she was going through. We were lucky to know Alice for so long and we also knew how kind she was, always thinking of others long before cancer

Update 13th May 2011

Alice continues to amaze us with the most positive attitude imaginable and a determination to make the best of the situation. She refuses to give in to the cancer and is giving her all in a desperate effort to outsmart the beast within. Her diet is entirely organic – home cooked/grown, with a variety of supplements and a mix of fresh home juiced vegetable and fruit drinks. She is making herself get out and walk every single day with Mabel. We also meditate together in the evenings and I think this plays a valuable part in her positive approach.

We are still seeing the psychic healer in Spain and are due to fly out again the week after next… unfortunately, I didn’t think about booking flights earlier and have now realised that it is actually going to be half term week following… not the best time for finding a budget flight!! We are seriously grateful to our friends, Jayne and Dean, for letting us use their apartment out there. Alice has now had EIGHT FULL MONTHS without any intervention or treatment of any sort… for an aggressive, lymphatic cancer. While the healer may not offer the cure we so desperately need, I have gone from being a little sceptical to becoming a total believer and I know that Alice is here with us now because of the healing.

In other areas, Mabel has provided so much joy to Alice, it’s unbelievable. She is such a character and if there’s any trouble, you can guarantee that Mabel will be in the middle of it! Alice is entering Mabel in her first dog show this weekend (14th) so God help the judges if they don’t place our baby! Alice continues to enjoy her oil painting and has quite a little business going – I must add that she has never pocketed the money, it is always given to charity, usually childhood cancer related. Other than that, Alice is also making cards to give to charities to sell – we give them to places such as the hospital shops and charity shops in town, etc.

Milly is continuing to do well and absolutely loves her ‘new’ school. This is such a relief as just a year ago, school was such an issue to her and her self esteem was so low. It’s so nice to see her flourishing and it’s one less thing for us to worry about. A few years ago, when Milly won her Child of Courage award at Westminster Abbey, she was granted a wish and asked to be a journalist for a day. It’s taken longer than planned but, just a couple of weeks ago, she was invited down to Bliss Magazine in London where she worked on a few articles and generally had a whale of a time. Thanks so much to Charlotte at the magazine – Milly will be back for her work experience! Milly’s ‘How to get the look’ piece can be see online – http://www.mybliss.co.uk/web/guest/beauty/detail?id=53856. Milly also recently completed a 23 mile walk to raise money for ‘Over the Wall’, a charity providing camp style breaks for terminally and seriously ill children. Our team, ‘Team Alice’, hope to have raised several thousand pounds. Milly’s next mission is to personally contact and engage all the local schools in supporting a child on Post Pals… watch this space.

Together, the girls have approached a couple of nursing homes in the area and we are shortly to commence visiting once a week with a combination of Bess, Scooby and Mabel (not all three together)! Milly and I were out walking the dogs a while back, when we bumped into an elderly lady, supported by a carer. She was absolutely thrilled we stopped, but very emotional when telling us how much she missed her dog. The idea was launched and we can’t wait to start our visits.

Simon and I both completed the 40 mile version of the above – visit http://www.keswick2barrow.co.uk/about.asp which gives info on the walk and its history. Simon is following in my footsteps and is off to Peru in November, raising money for Great Ormond Street and I’m currently thinking about my next BIG challenge… I’m desperate to do Kilimanjaro, but not sure if I could get enough training in and obviously I can’t up and leave Alice at the moment, despite it being her dream to go to Africa.

Now for the big thank you for everyone who has written to the girls. There has been so many lovely, encouraging cards sent that it would be difficult to be miserable about life. Thank you too for all the thoughtful gifts, they brighten the day even more. Alice received some basset books from Helen in Australia… ‘You can survive – tips for life through basset eyes’… absolutely fab, thank you. But the most entertaining of all gifts has to be the ‘Mabel-cam’… a small digital camera which clamps onto the dogs collar and takes photos automatically on timer. We have laughed so much at the photos telling us of Mabel’s day from her view point… pinching food… eating Nurofen (oops!)… shredding slippers… stripping garden furniture… not too sure that she should be doing it all but it sure makes entertaining viewing. Perhaps we’ve a novel in the making… ‘Mabel and me’!

So thank you to each and every one of you for filling Alice’s life with positive vibes and giggly post… we love it.

Update 1st February 2011

Apologies for such a lengthy gap in our updates. We’ve been mainly at home for the past couple of months, just taking each day as it comes. Alice had a particularly rough patch over Christmas and we did wonder if she’d ride through it but, in typical Alice fashion, she picked up and is making the most of the hours she’s awake! It’s at this point that I confess to not having noted down who to thank for all the lovely gifts and cards that Alice has been getting. She was so excited to receive more Lush deliveries and has become an expert at mixing the different bombs… half of this and a bit of that and half of that. I think that she would make a inventor for Lush! To the school group who were Alice’s Elves, please email your names and contact details via our link – what you did was truly special. We also had other thoughtful gifts for Milly as well. So, despite the lack of individual mentions, please accept our thanks.

Alice is continuing to see the psychic healer out in Spain, on a monthly basis. We’re not sure on how much longer we will be able to afford this for, but, for the minute, she benefits both physically and mentally and we’re grateful for that.

We haven’t heard or seen from anyone related to the hospital since October. This ‘out of area’ thing isn’t so grand when you’re at this stage and I have absolutely no idea what the forward plan is for us. South Cumbria does not have paediatric Mac nurses / Clic nurses / a children’s hospice or anything similar. I’m just thankful that I have been able to take on her entire care and her diabetes management; else I’d still be doing 200 mile round trips.

After months of hassle with her diabetic canula supplies, I’ve managed to win yet another small battle and I now have control over the ordering. Hopefully, I’ll not allow Alice’s supplies to get down to the last cannula, as the hospital did. Somehow, we’ve managed to stumble this far without any major disasters; we make a good team.

We had Milly down at GOSH in January and thankfully, things look okay there. Her almost continuous headaches are been put down to stress, so I’m not really sure how to address that. Really not sure.

So, more a rambling diary of life as opposed to a medical update; but that’s it from us.

Our heartfelt thanks to all who continue to support Alice on her journey.

Update 17th October 2010

First of all, thank you to everyone who continues to support Alice in sending her cards and gifts through Post Pals. She was delighted to receive some ‘Lush’ goodies since the last update and also some craft supplies which have already been put to good use.

I’m very sad to report that despite the extra chemo; last week’s scan shows that there is still some active cancer in her chest. Unfortunately, her function tests show that her body has had enough and we have been told that there is no more curative treatment on offer.

We have been offered surgery to remove as much of the active cancer as possible, but it is major surgery and would likely involve ICU, so we are really on the fence as to what to do. Surgery would only give us time, but if part of that time is spent in severe pain, we feel you have to ask what the true benefits are.

In the meantime, we are seeing a healer with Alice and spending a great deal of time preparing organic, pure foods and raw juices. If nothing else, it will perhaps change my (bad) nibbly habits! Alice is aware of the results, but remains very focused on doing all she can, both mentally and physically, to keep forward moving.

She is so very well in herself that I do sometimes forget about the beast within. She has been busy helping me with the Christmas Card project for Post Pals, and although we are back and forth to either the hospital or the healer, she has managed to make about 8 packs of 5 so far (all sold)!

We were absolutely delighted to be invited to attend the ‘Over the Wall’ Gunpowder Ball in Manchester on 5th November and are hoping that nothing happens to prevent the girls from going. They both have beautiful new dresses (just the fat, anaemic mother not sorted)!!

Having promised Alice a puppy once her treatment was over, we stuck to our word and the very day the hospital delivered the dreadful news, we collected our beautiful new puppy. ‘Mabel’ is an 8 week old Labrador puppy – as chunky and appealing as they come! She already follows Alice everywhere and Mabel has somehow managed to escape the crate at night and make it to the bedroom… mmm, not too sure what Cesar would make of that!!

So, we move forward into the winter months unsure of the road ahead. But we are still smiling as a day spent in misery would be a day wasted… having been on this path for so long, we know that there are many that would give anything to have this special time together.

Update 8th August 2010

I have no idea where the last three months have gone and I do apologise for the lengthy delay in updating Alice’s page. Alice continued with the intensive chemo and had a PET scan on 2nd June to assess the response. We were relieved to see a reduction in masses and it was decided to continue with a further two cycles, the aim being to achieve complete remission. It was following this course that we heard the news that a bone marrow donor match had been found for Alice, which while fantastic news, made us aware of how crucial it was that this chemo works if she is to have a chance.

Last week, after a further PET scan on 2nd, we continued south for a break in Torquay with Luke of the THHN. We’re glad that we were away, as the results show improvement but still not the elusive clear we are so desperately searching for. After debate, it has been decided to try two more cycles and see where we are after that. The cancer, it would seem, is made of pretty stern stuff. But Alice is tough too, and she is determined to fight with all she has.

So, she is going back into Alder Hey tomorrow to commence with a fifth cycle and she’ll be accompanied by some lovely ‘Lush’ bath bombs and some nice smellies from Torquay. She loves her Lush products and stocks permitting, has a morning and evening soak! It’s her little bit of ‘me’ time and the smell lifts her so much (and the nurses who love the lingering fragrance). The poor teenage boys on the ward!!

Which leads me nicely into ‘thank yous’… she had some lovely little boxes of Lush arrive over the past weeks and I can assure you, her face lights up so much that you’d think they were solid gold. She was also made up to receive a lovely card, letter and class photo from a secondary school – oops, I lost the address but thank you so much. I know her latest ‘lift’ is in the form of a DS quiz type game, which is going back into hospital with us – quite a hit. I’m not going to list all I can remember, as no doubt I’ll forget some, but just ‘thank you’ for everything sent to everyone. Alice does try to reply to as many of you as possible, but sometimes, she just isn’t up to it. Please understand and don’t think that it isn’t because she doesn’t want to. And to ‘Fiona’ (if you’re reading), Alice has lost your address and so hasn’t been able to write to you recently. Please write again (or email) with your address!I’ll try to keep you up to date a little more often in future. Sorry!

Update 29th April 2010

We were home last weekend following surgery on Thursday to remove the new areas of growth; so far Alice hasn’t had any feeling come back on one side of her chest. She started the intensive chemo yesterday at Alder Hey, although it’s best for post to go to our forwarding address.

The chemo is very experimental and hard hitting but Alice wants to do it and said that she won’t give in. If the chemo does manage to clear her cancer, unlike the previous ones we have tried these past 2 years, then she will need a bone marrow match to proceed and we are desperately searching for that special someone. You can join up by http://www.nhsbt.nhs.uk/bonemarrow/ or http://www.anthonynolan.org.uk/ or if you can click on www.facebook.com/pages/Alice-Pyne-Bone-Marrow-Recruitment-Appeal to find out about events you can come along to.

The recent coverage on the TV program saw a rise in post through our door. Alice received a letter from a lad who himself has gone through Hodgkin’s, which really touched her and he sent a voucher for a DS game. There have been a few boxes of ‘Lush’ products and some fantastic craft things arrived which is a huge hit. And yet more doggy post, although our scrapbook is on hold for the minute. Thank you to everyone who sent something, it really did help distract her and put a smile on her face.

Update 17th March 2010

After spending the earlier part of February in hospital with shingles (which I had no idea could be so painful), we were glad to have a little time at home before our Consultant decided enough was enough, we had waited long enough (for action from London) and they would start with a new chemo regime in Liverpool. This started on 23rd February, but what should be a series of day case infusions, ended up been just over 2 weeks in hospital. We’re not quite too sure whether it was solely the chemo causing problems; it could be that she was already coming down with something else, but it really knocked her. Having not eaten for over 3 weeks, she’s lost 12kg of weight and we were left with no choice but to have an NG tube for feeds (which Alice is not impressed about). So, we are just home at the weekend and due back again tomorrow!

Alice was very down while back in hospital and it was reassuring to see a bit of the old Alice appear once we’d got home. She’s still very tired and using her chair constantly to go anywhere, but definitely happier in herself. Monday was a nice day as Julie Bennett kindly treated us to cinema tickets to watch ‘Hachi’ – a new film about a dog. If you get the chance then go – it’s lovely and unbelievably, it’s based on a true story.

Alice has been well supported with post this last month so HUGE thank you to all of you for keeping her going – it really does provide a distraction. Our ‘Dog Scrapbook’ is coming along – we ended up buying an expandable album so that we can scrap properly and Alice can take it with her to hospital to look at all her canine friends! Doggie contributors include – Percy the Poodle, Bess, Fizzy, Toots, Harriet, Holly, Buckley, Oscar, Lily, Poppy, Paddy, Jess, Tara and her puppies (awh), Charlie (RIP), Fergie, Toby, Zach, Suzy, Diesel, Dave, George, Bob, Poppy, Ally, Kimmy (RIP), Jenny, Harry, Jessie, Ruby (and baby Jack!), Max (who is a fluff ball), Dizzi the Dalmatian puppy, Alfie and pals – Bella, Drogba and Jimmy, Skye, Elvis, Kita, Oscar, Rocco, Dylan and finally, but not least, Merlin.  WOW – so you’ll see that we have quite a few woofas to be getting artistic with – we’ll be posting photos of the album on here as it progresses.

Alice was so made up to receive a dog card from her idol, Cesar Millan, and that is being framed (I’m not allowed to add it to the scrapbook) – thanks Jan for organising that. He wrote ‘Believe with Love and Calm, Assertive Energy’ – ‘Blessings’. She couldn’t believe it and had to keep reading it again and again.

Now onto ‘none doggie post’! Thank you to Sharon, Kate D, Miriam for Alice’s book (fab choice), Sarah G for the bunny (sorry got it wrong last month), Jenny, Sacha, Viks, Alison for Alice’s book (another classic), Max the dog, Julie Bennett for various things – letters, treats and dog photos, Emily B, Emily, Helen B, Libby for the fabulous box of Lush things (one thing guaranteed to put a smile on her face is Lush), Arlene for photos and stickers, Deidre for her handmade card, an unnamed card from Finland, Anne-Louise for the puppy book (awh), Jane, Garry & Julie, Sarah, Suzannah, Claire, Kate D for the 100 ways to train a human dog book (so funny), Emma Stone for the knitted Angel, Angels of Hope, Wendela, Clare and Sophia. Phew – so you can see that Alice has been well loved this month. Thank you! Now for the grovelling apologies – Alice received a beautiful ‘Alice in Wonderland’ bracelet which wasn’t added to the usual list as we were sending a thank you and somehow, we have lost the address and so have no idea of who to thank. Please drop us an email and we can put that right! Another thank you is still due to the kind lady who sent a huge box of craft things for both the girls at Christmas time – again, please let us know who you are. Finally, anything sent to both of the girls may well have been opened by Milly at home and unfortunately, Dad does not always think to write down names and Milly is usually too excited – so, I arrive back none the wiser. Apologies if you are one of them!

So, the vague plan is to complete another 1 or 2 cycles of chemo and then PET scan to see if the cancer is sensitive to it. We can give more chemo if necessary, although the less required the better. Then, we have to pray that a donor is on the horizon and proceed with transplant once more, although this time it’s more risky. My job is to keep Alice as strong as possible for the battle ahead, so thanks for walking with us and supporting her.

Update February 2010

Alice had a further PET scan on 1st February, which we were praying would show the previous PET results to have been false. Sadly, that was not to be and we were dismayed to find further spread. Having tried all known protocols, we are somewhat out of options and the team at Alder Hey have been talking with the team at UCL to try and come up with something. We are hopeful that we will be allowed to try something experimental, but that will still have to be followed up with a BMT and currently, there is no donor. I would ask anyone eligible to register with either www.nhs.co.uk or www.anthonynolan.org.uk – the upper age on the NHS is slightly higher, up to 44 inclusive. Please consider it – YOU could be the one to save our girl. Please tell anyone you can.

Alice is still my smiley girl, but she has to deal with a lot at the moment. Her body is constantly aching, she isn’t sleeping and she is quite low, which just isn’t her. She has had much comfort from the fabulous microwave bunny which arrived (and pinched Milly’s at times, sorry – don’t seem to have written name down – was it Helen?). She managed to develop shingles at the beginning of the month and that required a week back in hospital as the pain was so great. Thankfully, it seems to be under control now. She has been enjoying a charitable project which has been run in the hospital by ‘Twin Vision’ and on Friday last week, we were invited to St George’s Hall in Liverpool for the awards ceremony. The animations were screened and the children all collected their very own Oscar – very proud mum!

At the end of January, we were gobsmacked when a large Elf box arrived for Alice – from her Elf Debbie. Not really too sure where it had been as the post mark was mid-December, but it provided a huge boost and we actually decided that Christmas in January was rather nice.On our thank you list – Helen, Hanna, Clare, Lydia, Kate D, Post Pals, Viks, Claire, Maria & Michael, Marjolyn, Shelagh, Helen, Sophie B, Munchang Middle School, Shauna, Hannah, Jemma, Marcus, Tez, Heather, Erin, Percy, Jayne, Sarah, Emily, Sarah & Abi (Liberty Rose) and finally a lovely box of Valentines goodies arrived, but with no name – posted from LE17, so thank you whoever you are.  No doubt I’ll have missed someone – please don’t be offended, it’s just my mushy brain and not intentional.If anyone could find any information on how we could get an autograph / card from Cesar Millan, please let me know. He is her idol and any regulars will know that she lives, breathes and talks dogs. I know that would lift her (as would Colin Firth coming to take me out for the evening)!!!

And finally, thank you to Anne who makes the most wonderful cards and sent one for ME! I was very touched that you did that. Thank you!

I haven’t a clue where we go from here but I will update as and when I am able. Please keep your messages light and child appropriate.

Update 10th January 2010

We got the results back from Alice’s scan on 22nd December and unfortunately the PET scan wasn’t clear and showed a new area of activity. So, Christmas wasn’t the easiest time for us and despite been a few days late, we were glad that we made the effort to go up to Malcolm Sargent House in Scotland, for Christmas itself. Alice was back in hospital for surgery on the 30th, which involved cutting a rib out to perform a biopsy on her thymus. Alice understands that the disease is still there and that we need to keep the fight going a little longer. She has such an amazing attitude to everything and I know that I wouldn’t be half as brave as she.

I apologise for complete lack of acknowledgements on here and hope that you will understand it’s a very emotional time for us. Prior to Christmas, the girls received a huge box full of really fabulous craft things which was just so exciting for them. I have taken photos and the girls have put your address to one side, so you will receive a thank you at some point. Alice was delighted with her Elf boxes and I do know that one came from Fearne and the other from Jojo – thank you so much for making it special for her. Alice’s regulars Hanna, Emma, Anne and Percy are to be thanked – we love hearing about Percy’s antics. Alice has also been receiving gifts and cards from many others – I don’t wish to list the ones I can recall for fear of offending those I can’t, but please know that your thoughtfulness brings a smile to her day when I am (more often than not) failing.

It may be some weeks before we have a plan of action and I will update when we know anything, but in the meantime, heartfelt thanks to you all.

Update 13th December 2009

Alice is doing well but is very, very tired and not really managing to do full days of anything. We try to get out for a walk every day but she seems to get slower as the weeks go by, not livelier. She’s even resorted back to the wheelchair at times, which is panicking me as she seemed to be doing so well. Not too sure if that is normal or not, but it could be over analysing things and perhaps we’re just starting to try and do too much with her, too early. She had her PET scan two weeks ago; yes… two whole weeks ago and we still haven’t got the results back. I wish that the people doing these things could live these weeks as us. I know that things would soon change if they had to wait. We rang and were told they haven’t got the results. Whether that means that they genuinely haven’t got the results or that they have the results, but are figuring out where to go from here, is anyone’s guess.

We go to London for a few days next week and will be going to see Billy Elliott on Tuesday evening, attending the GOSH party on Wednesday and meeting up with some good friends. The purpose of the visit is really for Milly to attend various appointments at GOSH but as it’s Christmas and also Alice’s birthday coming up, we thought it would be a nice treat for her. Having booked everything, we’re just not that sure that she is going to be up to it all and taking steriliser bags, clippi-bottles, a travel kettle and wheelchair with me is kind of taking the edge of it!! It will be fun to experience British Rail on a busy Friday when we travel back.

She is looking forward to Christmas and on her list is a puppy, hair straighteners and some crafting supplies. Not the easiest of lists to work with as a) the puppy is out due to transplant restrictions, b) she hasn’t actually got any hair and c) the thing we know that she wants costs the earth! Anyway, I will have to get my finger out and have a proper look and see what we can find. We have spent the past few weeks making 20 red fleece stockings and have persuaded our friends and family to sponsor one. They are filling them and each one will be delivered to a child affected by cancer, who is staying at the house over Christmas. We thought that it was a lovely way to show that our friends and us care about these other children and Alice feels very good about having done them.I promised that I wouldn’t do it last month and yet I have… again. The list was started with good intentions, lost and never re-started, so it’s down to my brain, which isn’t exactly efficient at the moment. Still… I know that Alice has had lots of good wishes from various Effingham villagers and loves all the different postcards, June, Marjolyn, Tez, Kate D, Post Pals themselves – love the bathbomb and haven’t opened the little Christmas package, Emma, Emily, Percy the gorgeous Poodle and last, but not least Hanna. We loved the PJ pictures – cool. Alice has also had some Christmas cards starting to arrive and again, I haven’t got a list for those, but THANK YOU. Alice and Milly both received a fabulous surprise from the Thomas Ball Children’s Charity which I can’t mention as, once again, they’re not getting them until Christmas Day. However, I know that they will be absolutely thrilled when they see the boxes and their contents!To all of those that I’ve no doubt missed off, huge and grovelling apologies… I feel a New Year’s resolution coming on! THANK YOU.

Update 27th October 2009

We have just (about an hour ago) been given the news that we are free to go home tomorrow (Tuesday) and so we are so excited, but nervous as well.Alice is doing really well but things have been tough for her in the last week; one of the lads who was in transplant with her sadly passed away and another has been told he is now terminal. Bit of a reality check, I think. ‘Stereo Decade’ came into the ward on Friday to play to the kids, a real lift for them – they were amazing and it is so lovely to see youngsters giving their time so willingly.

I do have a list of people to thank, particularly Percy the Poodle (with his humans Sarah, Emily and Jane) who have been keeping Alice’s spirits lifted throughout transplant. Hanna and Tez have also been very supportive as have many others and I promise to update with a proper list… soon!

We now have a period of clinic appointments until her PET scan in December to see if everything looks to be working as it should. As we haven’t had a holiday for a while and her birthday is 15th December, I’m trying to find a short break package to take her and Milly away for a few nights that week, perhaps do a show for her birthday night and just enjoy London. That should (theoretically) fit in regardless of the results. Milly has her pre-surgery appointments in GOSH on 17th, so that would tie in nicely with that. However, mid December is not the easiest time to find nice (but affordable) accommodation in London and, unfortunately, we still have transplant restrictions (diet, etc).

So, we’ll be back home from tomorrow, which will be so strange. I’m now trying to figure out how to pack 4 months worth of rubbish into one car! It’s frightening how quickly time has gone by, can’t believe we’re not far from Christmas.

The Hell’s Kitchen DS game was well received and I’ve even had a go on it! She has spent all her (waking) hours on her laptop, her iPod, her DS or her DVD player. It makes you wonder what people used to do prior to these modern inventions.

Milly is currently out in Florida on ‘Dreamflight’ with an amazing bunch of people. The timing was excellent as she has had quite a year with all of Alice’s treatment, but also has surgery coming up herself, so it just fit nicely in the middle. She gets back tomorrow, so it will be back to full-on-busy-mode at home… I can’t wait to get my family back together.

Update 23rd September 2009

Alice is doing as well as expected. She’s lost a lot of weight and is on TPN now, antibiotics for an infection, morphine on pump (which is blissful for us as well as her) and just generally sleeping and groaning a lot. She is fine though considering what others are going through. G-CSF starts today (or perhaps not) and then hopefully, within the week, the cells will start to kick into action.

Update 13th September 2009

Things are moving along with Alice and she is into high dose at the moment, with transplant due on Tuesday. After a couple of rough days, her sickness is now under control and although extremely inpatient with us, she is at least not feeling too bad!

Thanks go to the following who have sent post over either August or September (or both in some cases)! I do apologise if you’re missing… I did try my very best. To Hanna, Nicky W, Linda B, Clare, Katherine, Tez, Anna (Ohio), Michelle, Percy the Poodle, Viks Post Pals (the poodle is on the bed – girlfriend for Percy we reckon), Erin & Dave (Utah), Tracy, Edit (Toledo), Vicki, Silvia (AB), Charlee – Jack – Harry, Autumn (UT), Kylie (UT) Nicola (UT), Karen, Cathe, June Junko, Liz (Pitman), Anne Ray (wow), Kellie, Caroline, Sarah, Jenny, Jane, Karen, Kate Dee, Melinda, Sarah, Owen, Nicola, Grace (Mmm), Flo, Laura (returning to her reception kids), Emma, Debbie, Lynn, and finally, but not least, John from Sussex – how nice to receive a card from a gentleman! Alice has been thoroughly spoiled with post which has done an amazing job of keeping her spirits up and her time occupied. She has enjoyed making friendship bracelets, loved the Lush bath we poured for her and really enjoyed the DVD sent just this week.

I have made up a large clip frame with many of the cards she has received this past month and as it is sealed, we are having it cleaned to come into the isolation room. So thank you – it’s something nice to look at!

Update 23rd August 2009

We remain in Liverpool with Alice and things are moving slowly, but I suppose it is expected.

Her counts haven’t been recovering lately and as such, she has been in and out of AH with various infections or viruses. Her trip to Over the Wall was cut short after two days and they phoned for me to go and collect her. She just wasn’t up for it and it was too much for her, but she did enjoy the time she was there, be it limited.

Last week, Alice had functioning tests done on the Monday/Tuesday and we are delighted that her heart and lungs both appear to be okay to proceed with high dose. We are still awaiting kidney and liver function. On Friday she had a PET scan at Preston and we should get the results by Wednesday. She is having surgery on either Wednesday or Thursday to put in a double hickman in readiness for the high dose and we are now set to proceed on 7th September.

Alice was recently offered a place on ‘Dreamflight’ to Florida, but we have had to decline as regardless of which way things go, she won’t be able to go.

Update July 2009

Once again, apologies for the lengthy delay in updating Alice’s page. It never ceases to amaze me that I manage to get to midday and still be in my dressing gown; nothing to note and yet so much achieved!

Through June, Alice had the first two of four cycles of conditioning chemo and we also managed to successfully collect adequate stem cells, disease free. We’ve been back down at Alder Hey since the beginning of the month and just today moved into the Rhys Daniel’s house for a few weeks. Alice has been having chemo 24/7 followed by G-CSF for 10 days (currently ongoing) and hopefully back to chemo for 2 weeks from next week prior to high dose chemo starting on 25th August. The stem cell transplant will follow on from high dose. So, regardless of whether Alice is in or out of hospital, this is now our base for the duration. It is just so good to have this place and such a relief not to be living out of a bag and constantly packing and unpacking. Alice was reaching her limit in hospital as it is just so invasive and she is a very private girl. She is noticeably happier to be ‘out’, if only across the road!

We are keeping our fingers crossed that Alice will now be able to go on the ‘Over the Wall’ camp in the Midlands. She has been for the last two years but we thought she wouldn’t be able to do this year. She was supposed to be in transplant now but, with the positive PET, we had to add another course of chemo, thus giving the potential to fit a few days out. Alice’s consultant is keen to get her there and they seem willing to move things around if need be. I’m a little on edge about her going away, but if it’s what Alice wants, I won’t spoil things. I won’t be far away though!

Alice has received lots of post – cards, letters, postcards and some lovely gifts. The teddy on her hospital bed was sent from Sue and is absolutely gorgeous and she’s had some lovely craft things, some DVDs, a story CD and some gorgeous fluffy slipper socks! These have been keeping her spirits up and providing a constant source of distraction. I am guilty once again of not being able to recall all the names, but please don’t hold that against Alice. Thank you to each and everyone of you … I will try better, but better not promise because I’m useless!

Update 1st June 2009

Alice has been having chemo and is having the stem cell harvest early this week. We hope to be allowed home for a couple of weeks from Wednesday.

Update 11th May 2009

Following last weeks tests we have a new plan.

We go into hospital on Tuesday. She will have a bone marrow aspiration on Wednesday, followed by functioning tests for all the vital organs, and then start a new chemo on Thursday or Friday. When that starts to have effect, she’ll have cyclophosphomide to stimulate new stem cells and they will harvest them then. Once these are safely out and the Hodgkins has reduced enough, they will start the high dose chemo and she will then be in isolation and have a stem cell transplant (information on what can and can’t be sent post wise will be posted on her page when needed).

We are expecting to stay in the hospital right through, but it all depends on how the initial chemo goes – she may well need a break from it and if possible, we will come home for that.
We will post the hospital address when we know which ward we will be on, but Milly and their Dad will be able to bring up any post at first.

As she will be feeling very wiped out (she is already shattered) we have updated her list of interests.

Update 28th April 2009

Sorry that we haven’t updated for ages. Alice’s radiation finished in mid-February, which she tolerated well and with a smile on her face. We then had to wait until the end of March (6 weeks) for the next PET scan. We were lucky to spend a week at Malcolm Sargent House over the Easter Holidays, enjoying time together as a family and being pampered by their wonderful staff, although the pending scan results were never far from our minds. We got the results back after an agonising 2 week wait which although are now clear in the chest, show new disease in the neck. This is obviously another blow to us. Alice is being admitted back into Alder Hey this week to have surgery and we’ll know where we’re heading a week or so after that.

Alice has been approached and asked to say a few words and then start the Race for Life in the nearby town of Barrow. She was thrilled to be asked and we’re just hoping that she will be well enough to do it. Need to sort out tutus, fairy wings and lots and lots of PINK!

Thanks to everyone who continues to send Alice and Milly post. I’m praying that being a complete wreck excuses me from keeping lists (the lists that I never remember to do anyway)! Something arrived this week that brought the biggest smile ever… a fabulous huge hand stitched quilt from Love Quilts UK. Each square has a different dog stitched onto it and it is really quite amazing and had us all emotional. Its arrival gave a much needed distraction and it will have pride of place on her hospital bed this week! Milly also received one. If you are a cross stitching fan (I am hopeless) then have a look on their website and get stitching – http://www.lovequiltsuk.com/. We will update as soon as we know more. Thank you.

Update 31st January 2009

Alice has had quite a difficult month, but as usual, she has faced it with cheerful resilience.Prior to commencing radiation, she had several appointments at Clatterbridge to make a mask in readiness for her treatment, along with various x-rays and scans. After her previous experience at Manchester, she was particularly anxious about it and it was a relief to have such wonderfully caring staff that went to great lengths to put her at ease. She started radiation a few weeks ago and after the initial daily commutes, we were lucky to be offered accommodation through the Rhys Daniel’s Trust. We are now approaching our final week down here and looking forward to getting home. We are then going to have to return to the much hated phase of ‘watch and wait’ until our next PET scan. We just pray that the treatment has worked this time.

We have had some post down here in Liverpool from Viks, Kate, Jane and Emily. Thank you so much for everything and the chocolate candle is fab! Before we left, Alice received a fabulous audio CD from Stephanie and that’s all I can definitely remember – I am told that there is much more waiting at home in Cumbria, so no doubt Alice will be even more excited than I to arrive back next week. We do have another list at home and we will thank people properly when I arrive back – this is more to keep people up to date with Alice’s treatment.

With grateful thanks to all and wishing you all a ‘Happy Valentines Day’!

Update 5th January 2009

Alice has had a fairly uneventful month health wise. She has completed her second course of chemo and will be starting radiation treatment this week at Clatterbridge (where Alder Hey sends their kids to). She is just feeling tired really, no other side effects at the moment, although I’m sure the RT will bring its own problems! We are currently faced with having to do the 4 hour round drive every day, as there is no accommodation available at present. As with many things, it comes down to cost, and it is still much cheaper to drive (at around £35 daily in petrol) than to find a B&B. It is a joke that prisoners are afforded better conditions than kids enduring these truly horrific treatments.

Alice was invited to go to Lapland with ‘When you wish upon a Star’, Manchester. It was so good to just be a ‘normal family’ again. She had an amazingly magical day and we were all very sad to get back onto the plane.  Alice also turned 13 in December and we managed a quiet meal with a few close friends. She received lots of lovely cards and gifts, particularly from Post Pals, so thank you to everyone.

Christmas was a particularly exciting time for both the girls, although it took Alice 3 days to open everything as she was so tired! So many people had put a great deal of time and effort into sending things and it was so lovely to see the smiles on Alice’s face (see the photos we’ve uploaded to Post Pals). Alice was extremely lucky to receive two ELF boxes – one from Kate D and another from ‘?’ (please let us know who you are)… even I was curious about the contents! They were packed to the brim with little (and not so little) packages. THANK YOU WONDERFUL ELVES! Hanna sent a wonderful array of well received gifts which Alice was delighted with and she also received a package of gifts from Marjolijn, including lots of crafty bits and some FAB name stickers which are already being put to use. I think that this last package was intended for Alice’s birthday, but I’d put it under the tree! She also received some very thoughtful gifts, emails and cards from Stacey, Julie Barrett, Louise Woodcock, Linda, Post Pals, Becky B, Despina, Maria & Michael, Erin & Kyle, Charlotte, Marjolijn, Jenn, Viks, Susan, Helen, Sarah, June Junko, Amy Parr, Emily Edmondson, Kristina and last, but not least, Emily & Jane. I pray that I have everyone on my list, but if you are ‘MIA’, then it is most likely because the children managed to receive and escape with your gift before I could list it!

There is no package or card more special than the other – each unique delivery brings its own joy and if they were all the same, the magic would be lost. So, big or small post, thank you to each and every one of you and ‘HAPPY NEW YEAR’.

Update 26th November 2008

Sorry for the delay in updating Alice’s page. We travelled to London in late September and were disappointed to learn that UCH didn’t want us as Alice isn’t yet 13. Apparently 12 and 3/4 is a very awkward age! The consultant we spoke to was also of the opinion that it was too far to be travelling from Cumbria and he didn’t think that it would be fair on Alice. It is a great pity therefore, that he didn’t listen to our argument. So far, we have left for Alder Hey (where she now is) from London, more times than from our home in Cumbria. One can only assume that these people have their mind closed to the minority with exceptional circumstances. After our encounter with UCH, we were desperate to move ANYWHERE. Manchester and UCH had other ideas and seemed almost desperate to continue Alice’s care at Manchester, which we were not going to allow. We dug our heels in and eventually Alder Hey were asked to accept Alice.

So, Alice is now into her second month of chemotherapy at Alder Hey hospital, bringing it close to a year of treatment for something that should have been solved in 4 – 6 months! Alder Hey are fantastic in every single way – the nurses, the assistants, the shop, the canteen and especially our new consultant, Heather. She has gone through everything with us in detail which was so wonderful. We are unaccustomed to such communication and extremely glad we made the move. It has that wonderful feel that we have come to know and love at GOSH. We have now been told that Alice should have been a 3B and not a 2B at diagnosis and therefore the prognosis is a little worse, but we are still very hopeful. She will now have to have radiotherapy as a matter of course, to the full field, including heart and lungs. This was very upsetting for us as had they listened to me a year ago the treatment would have been very different. So, another of ‘those months’ and we’re not too sure if we’re coming or going. Alice’s hair, which had reached the grand length of 2cm, is now falling out again and she is pretty distressed about that. She is feeling very tired and weepy, but still my gorgeous girl inside. Alice hasn’t been to school for quite a long time and unfortunately her friends now seem to be forgetting her. Two of her closest friends have had birthdays recently and not included her which left her feeling very upset. It’s very hard to come up with reasons for things like this, other than they are simply thoughtless and have no idea just how difficult life is for her right now.

Alice has had so much post over the last 2 months and just for a change, I’ve kind of misplaced, okay – lost, the list. Kate D did send a very special present for both of the girls and they were over the moon. Alice is using it constantly at the moment – in bed, in hospital, in the car… thank you! Hanna also continues to send regular post to Alice and also St Matthew’s Sunday school brought a smile to her face with some lovely letters. I sincerely hope that you can accept my apologies for not been listed personally but every letter and every single item is so eagerly opened and read or played with. The post has kind of become her ‘friend’ and is a wonderful distraction, particularly on the down days. Alice has taken up residence on the sofa in the hallway just to be there when the post arrives. She is busy making cards herself and has already posted to some of you. As for me, I’ve just completed a 10 day challenge in Peru, for Great Ormond Street Hospital. With various events and my sponsorship, I think that I’ve raised around £11,000 for them, which I’m very pleased with. Having agreed to this over a year ago, it was extremely difficult to know whether to go or not, but the 10 days fitted with Alice’s ‘off treatment’ days and I had so much money resting on it. I found it quite difficult to detach myself from what was going on at home and spent a lot of time holding back the tears. It was the hardest thing I’ve ever done, but I’m so glad that I did… it kind of proves that you can make yourself do anything if you really want to.This will probably be our last update before Christmas so – ‘HAVE YOURSELF A MERRY LITTLE CHRISTMAS’ x

Update September 2008

We had our scan in early September and unfortunately, the results show disease progression. We have been back in Manchester but this time at Christies where we have been fortunate in having the most wonderful consultant who actually talks to us. What a difference a bit of communication makes. We were advised to go with radiotherapy, but not being one to settle for the first answer, we spoke to both the US and to GOSH / UCH, both of which would do different things. They would go with high dose chemo and stem cell as they don’t think that the radiotherapy is the answer for Primary Persistent Disease. We have therefore made the difficult decision to pull Alice out of treatment in Manchester and get her down to London ASAP. Manchester still felt the radiotherapy was the best option. It wasn’t easy, both have their advantages, but we had to go with the one we thought best.So not the best of months, but at least we know what we’re facing and have a plan, if a little vague. Unsure of what will happen to Milly now, she may have to go back to school as I don’t know how things will pan out with this new phrase.

Thanks to all who have written to the girls in the last 6 weeks. Hanna, you continue to put a smile on Alice’s face – thank you. I simply haven’t got around to listing the others, but please don’t be offended, your cards still mean a lot. Thank you for your continued support of our girls.

Update 18th August 2008

Alice has had a good July/August and is looking really well, at last. She is in Manchester today to see the consultant, but unfortunately we don’t have a good relationship and I just can’t face going. Her Dad has taken her as he if far more detached and businesslike than I am. We are waiting to get another scan to confirm the make up of these residual solid masses. They are likely to be nothing to worry about, but until we know, we feel unable to draw a line under the treatment part. Once we are settled with that, we can move onto the next phrase, which will be wonderful.

Alice went off to ‘Over the Wall’ camp at the end of July and announced it to be her ‘best ever break’ when I collected her. They are just amazing and I always cry when we drive away. I am in awe of all these wonderful people and everything they give for a child they don’t even know. The girls are full of chatter and obviously have the time of their lives. You can go to ‘Over the Wall’ and link to photos of the kids at http://www.otw.org.uk – select the ‘photo’ link. Our paths have crossed with many charities over the years and I know that when the girls are older I’ll be getting involved in some way.

We were planning to spend a week camping after collecting the girls, but unfortunately, Alice felt ill within about 4 hours of arriving back at our tent, and although recovering, Milly then wasn’t well and we ended up packing up and coming home early. Illness under canvas doesn’t mix! We are fortunate in having 5 days booked in Scotland from this coming Saturday at Malcolm Sargent House. We’ve never been and don’t know what to expect – excited and nervous at the same time!

Thanks to – Post Pals, Jenne, Lily, Hayley, Sami (Karen), Dawn, Kate Dee, Hanna for everything, Becky (Surrey), Jennifer Castle and to Sheila and her woofa, Rufus x x x

Update 2nd July 2008

Alice has had a reasonably good month. She finished her initial chemo in June and managed to get back to school for a few mornings, which was nice to see. She is looking a lot better in herself, although this is deceptive as she still tires very easily. She completed the Race for Life on 9th June and we raised around £200 between us. Alice’s scan in late June wasn’t completely clear and we now need to wait for 6 weeks (early August) to rescan and see what’s going on.

Alice has to stay with my mother at the moment as I’m in London with Milly, so I’m proud of her managing to sort out all her meds and her diabetic pump without me to guide her. Thank you to all who continue to write to Alice, especially her regular, Hanna (hope I’ve spelt that right). I will add thank you’s at a later date as I have the list at home, not here in GOSH. I can remember the jewellery box from Kate D… thank you.

Alice is going to Over the Wall camp on 27th July, which I think (hope) will do her some good. She is very hesitant about going at the moment, but I’m hoping that she’ll gain from it. She lacks confidence and I think once she’s there, she’ll be fine.

Update 16th May 2008

Another month has gone by! Alice had her PET scan and the results were promising, showing everything shrinking and becoming less active. The plan is to continue her chemo for the moment and then re-scan. Alice is now on a 2 weeks worth of oral chemo, along with the steroids and anti-sicks. We are back at Manchester on Monday.

Alice has now managed to miss the majority of the whole school year. Her school has been very good with us all and her friends keep in regular contact. Unfortunately, the weeks she feels well tend to be the weeks on treatment and the weeks she isn’t on treatment, she tends to be quite weak. We are hoping to get her into school, at least part-time, after the spring break in June.
Alice and Milly are both being bridesmaids at the end of this month. They have beautiful ivory sequined bodices and tulle skirts. Alice is going to collect her wig next week, so we’re hopeful that she will feel like a princess and have a very memorable day.

I competed in the annual ‘Keswick to Barrow Walk’ on Saturday 10th and managed to complete the full 40 mile walk, raising around £1,000 for Clic Sargent Childhood Cancer. I’m hoping to raise around £5,000 doing the Inca Trek for GOSH in November and I’ve already raised thousands for ‘Jeans for Genes’, so next on my ‘hit list’ will be fund raising for ‘Over the Wall’ (OTW) and for ‘Post Pals’… watch this space!

Update 1st April 2008

I 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!