Home for Christmas

It has been amazing - we managed to break Fran out of hospital on Tuesday night ensuring we had a really special family Christmas! Francesca it seemed had had a line infection so, instead of the three iv antibiotics she was on we were able to reduce it to just one - that could be given at home by the community team - hurrah! So, with the information at hand I swiftly broke her out (along with Stuart) and bought them home to enjoy Christmas together, along with Nana and Grandad.

The children had a great day and have been enjoying the spoils of Santa over the last two days. Fran will have her last antibiotic tomorrow and then we hope we are free of temperatures for a little while. On the 5th January she'll have a MRI to look at her legs - they remain sore and we are looking forward to elliminating anything suspicious.

Photo's to be posted soon.

Christmas is Coming!

It has been an absolute roller coaster of a week! Monday saw Francesca's school nativity play - Fran was a shepherd and a fine looking one at that (as you can see). She was amazing and sung her heart out during the whole play! The whole school worked really hard to make it brilliant! Charlie hadn't been feeling too well on Sunday with a temperature (again) so I took him home just after Fran's part and left Stuart to watch the end. Once we were home Charlie seemed fine but I wasn't! This silly flu/cold virus had hit which quickly developed into a full blown chest infection. Poor Stu, I don't think he has ever had to look after me like that! For me, all is fine now and the anti-biotics have done a sterling job.

Wednesday bought about Fran's next trip to GOS for a lumbar and to see Nick. I clearly couldn't go so Stuart and Fran poodled off early in the morning. Everything went well and I think they are still happy with Fran's progress. Once they got home Fran started to spike a temperature and by tea time we took her into our local hospital where we have since been. A sense of deja vu has been looming. It seems most likely that Fran has another virus, she is currently on three different iv antibiotics which, do seem to have picked her up a bit. Yesterday she came home for the afternoon as she hadn't had a temperature for 24 hours and we were hoping that today she would be discharged. Unfortunately, by 6 last night she had suddenly spiked another temperature of 39..... It is disheartening as we really don't want a repeat of last Christmas.

Once again though, for her part Fran is amazing, jolly and looking forward to the visit of Father Christmas. Likewise, Charlie is excited about the prospect of a big stocking from Santa!

Here are some long overdue pictures of Fran and Charlie with their cousins in November, having fun in the woods and Fran at her Christmas play.

We will keep you updated but in the meantime ..... Merry Christmas to you all

Fran back home and school

Francesca was able to come home from the hospital on Friday - it seems that it was a virus that needed to work through her system. Her neutrophils have remained low so today was the first day that I felt confident to send her back to school. We were keen to get her back as the children are learning their song for the Christmas Show and, as you can imagine, she absolutely loves it!

As is usual for our wonderful trooper she has coped really well. She has been in really good spirits and despite experiencing pain in her legs over the past few nights she is happy in herself.

The countdown to the end of treatment continues as it is now only 5 months! We can't wait!

Chemo and a virus....

Last week Francesca had her monthly dose of vincristine which, on the whole she seemed to cope well with. She was at school the following day and seemed fine - as she was due her MRI this week it was decided that she wouldn't have her steroids and I am sure that is what made all the difference! It was just as well she was OK as Charlie had a horrible temperature all week and was really poorly. As you can imagine, we wondered if Francesca would in fact catch the cold/virus?!!...............

She did! Over the weekend her temperature was a little higher than usual and then on Monday she began to spike and off we trotted (for the first time in a long time) to Lewisham Hospital to begin IV antibiotics. They have been taking cultures to see if she has a line infection and she had a chest x-ray which showed a few bits and bobs which could be current or possibly from her last chest infection. Currently she is on 4 different antibiotics and just today is receiving a blood transfusion - we can't almost remember the last time she had one of those either!

Fran in herself is on fine form - tired but happy. We are hoping that she will be home tomorrow if she doesn't have any more temperatures and I am looking forward to going to the hospital later today and finding a very rosy looking Fran post transfusion!

We will keep you updated.

A much needed update

The last month has been really busy as we seem to have settled down into some relative normality (it's only taken 20 months!!). Francesca has managed to spend much more time at school and Charlie is really enjoying nursery. Stu has been busy at work and I have taken on a role within Fran's pta.

A couple of weeks ago we had another dose of chemo and steroids. The good news was that the steroids, whilst not great, did not have such an intense effect on Fran as the previous month. We are due them again in about ten days time but, as Francesca needs an MRI scan they have decided to hold off on the steroids.

This past week we were up at GOS where we saw Fran's consultant Nick. It is always such a positive time as we are encouraged about Francesca's progress. The next big thing for her is on the 25th of November when she will have an MRI scan. This is to check her knees and hips as these are areas that she has suffered with much pain since the inception of treatment. She frequently feels pain behind her kneecaps and more recently her hips get sore. It is most unlikely that anything is amiss but, it is important to make sure that her bones are not been affected by the chemo. Nick seems to think that it is fine and so we are encouraged by that.

So, there are only six months of treatment left and the prognosis remains brilliant. Assured of this, Stuart is already planning the post treatment party!

As you can see from the picture Fran is looking great! We are off to Bristol to celebrate my mum's 60th this weekend - many more pictures will follow I promise!

A Big thank you needs to go out to our very good friend Sam, who has just completed the Great South Run in a brilliant 1hour 41mins and raised over £500 for Children with Leukaemia. Astounding given that Sam has three children (Tegan is Fran's best and oldest friend) and her baby is just 6 months old.

THANK YOU SAM!

Dreaded steroids and a trip to GOS

About 10 days ago it was time to embrace the dreaded steroids and chemo. The experience for Francesca was, this time, far from pleasant (much worse than usual). She really felt the side effects full on and suffered with chronic stomach cramps and everything that goes with that. Stuart and I were sitting up with her in the middle of the night as she tried to get through it. Her mood swings weren't so chronic - we think she simply didn't have the energy. After speaking to the symptom care team at GOS it looks as though they may in fact change the steroid that she is taking which should mean these side effects are at the very least lessened and at the best gone. Along with the bad tummy she continued to have some aches and pains in her legs and hips. We are awaiting an MRI just to check that her bones are all ok - once it is confirmed that everything is as it should be we will be referred to a chronic pain clinic at GOS to try and make the next few months a bit more comfortable for her.

The good news is that despite the above she has only missed 3 days of school so far this academic year - hurrah! We are so pleased. Francesca is loving being at school and goes to one after school club - Dance (surprise surprise!) Although she missed over half of her schooling last year she is doing really well and working hard at her reading and writing. In fact we had a card sent from one of the teachers at school sent home today that told us how well Fran is doing and how hard she is working. It is so great to know that she is happy in her class and loving school.

Charlie started 'Monster School' (Busy as Bees really - but he likes Monster school) and is settling in well despite a rocky start. He goes two mornings a week and it is doing him the world of good. He chats away like a good one although it does mean that he now has the vocabulary to tell me exactly what has been going on with his big sister and what she's been up to!

This Wednesday just gone we were up at Great Ormond Street for Fran's lumbar which went really well. It is incredible to see how much Fran has become used to her treatment (a place that I never expected to find her in). She was really looking forward to the GA as she likes the 'shivery feeling' she gets when going off to sleep. It is also fantastic because rather than waking up distressed from the general the only things she needs is her family and food (not necessarily in that order!)

We are 2/3 rds of the way through treatment - Wow - what a road to travel with just a little bit left. We are so proud of how Fran is handling the whole thing. The other day she asked me when the leukaemia would be gone and it was good to be able to reassure her that it would all be over in Spring next year.

Photo's will be posted over the weekend!

Bridesmaid again and a catch up!

Big sorry from me that it has taken me so long to update the blog. We have been really busy recently what with Fran's birthday, preparations for the return to school along with preparations for the second big wedding of the year!

To backtrack a few weeks, Francesca had her first bout of steroids just nearly three weeks ago - the first for about 5 months and, as we expected, they knocked her sideways. Once again we found that she struggled to sleep, was constantly hungry and had mood swings that went from ever so slightly manic/excitable to really low and sobbing for no apparent reason except she felt sad. It was a tough week and, as usual took her another week to really return to normal. It is great that she is well enough to take the steroids but awful that she has to endure such a tough couple of weeks. I have said it before and am sure I will say it again but they really are one of the most awful drugs.

Over her official birthday weekend we had family to stay which was lovely. The children had a great time whilst my brother and Stu grafted in the garden. Fran was very spoilt and had a fantastic time with her cousins.

The week of the steroids we were lucky enough to be invited along to Starlights family day at Popham airfield. It was fantastic. Francesca and I experienced a thrilling helicopter ride over the countryside. Charlie and Fran went on the ponies twice, took a drive in a Rolls Royce, had their faces painted and, my personal highlight, was the ride on the back of a Harley with Fran (it went so fast I lost my cap!). There were lots of other things to do there and the children enjoyed the best day out. We are still so grateful to Starlight for all they do - it really makes a massive difference to the children's lives.

The past week has been a really exciting one though. Last Thursday Fran went into year 1! Goodness! She has really enjoyed her return to school and is lucky in that for the first term she is in a class of just 15 children. We are so glad as she missed so much school last year we feel she'll really benefit. After Christmas the class will be bigger but for the moment it is really great. When I was chatting to her about school last night she was really animated although voiced that she doesn't enjoy 'later' in the day so much as she gets tired - understandable given that she hasn't been to school for 10 weeks!


On Saturday Francesca was bridesmaid for the second time this year and had an absolutely lovely time. You may recall that Fran proposed to Anne on James' behalf last year (on the blog) so it was a really wonderful that she was well enough to follow her Auntie Anne down the aisle at Dulwich College. Lots of fun ensued with Fran, Charlie and another little girl Amy hogging the limelight with the video cameraman! As you can see Anne and Fran looked absolutely beautiful and really enjoyed the day. Stuart and I also enjoyed it as my mum picked up the kids in the evening so that we could enjoy the much anticipated party! I will post more photo's of the day as I get them.

Starlight and a wonderful 5th Birthday Party

A week ago last Thursday we had Fran's Starlight wish party..... Her playhouse was all finished and the garden decorated with balloons. Starlight also organised for beanbag chairs and a rug to go into the playhouse along with an amazing face painter who decorated the children beautifully. As you can see the afternoon was a real success.

The whole afternoon was brilliant. The most extravagant cake (for a five year old) was made by a lovely lady called Jane who, made a playhouse cake that matched Fran's perfectly. Jane is the mum of Fran's favourite doctor at Lewisham (Mel) and drove all the way from Stratford-Upon-Avon to deliver it. Stuart and I were overwhelmed - Fran and Charlie wanted to eat the bunny rabbits!

Jody and Susie from Starlight came along dressed in their tutu's and wings to make the afternoon extra special. They had organised for a photographer from the local press to take pictures and these then went into the Mercury paper here in Lewisham - they did a great job and we are very very grateful.

Francesca had a fantastic party and has been really well recently so was able to enjoy it to the max. This weekend just gone was Fran's actual birthday and was spent with family in the garden..... She's had a great time of it. It is such a nice place to be when she is feeling so much better and knowing that in just 9 short months treatment will be ending.

This week holds chemo and the start of the dreaded steroids (we have missed them over the last 4/5 months due to illness). Whilst great that she is well enough to have them, we anticipate a tough few days! Oh well, there's always the playhouse - for me though!!

I hope you get a sense of the fun had from these pictures.

All quiet on the western front!

The good news is that we came out of hospital just over a week ago and they weren't able to find anything. It seems most likely that Fran had some kind of virus that, over the course of a few days ran its path. She appears much better than she has been in a long time and despite leg pain she is doing well.

On Friday Stuart had the day off and we managed to get down to Leeds Castle where the children had a fantastic time - see pictures.

This week sees Fran's birthday party (a week early), we are combining it with a grand opening of her playhouse. It should be a great time. A special cake is being made by an amazing cake maker and the playhouse is Fran's wish from Starlight. Starlight are coming along too to make the day extra special - bringing with them balloons, a photographer, party bags etc.... It is so the right time to give Francesca something special - chemo and treatment is gruelling and she has had such a rough time of it that all this just feels right.

Enjoy the pictures - put on a bit late I know but they were worth it I think!

Back on the Protocol then back to Lewisham - dismay!

Last week we managed to make it up to Great Ormond Street and Fran was able to have her lumbar followed on Friday by vincristine at Lewisham - whilst she isn't looking too hot at the moment as a result the good news is that we are back on course with her protocol.

She also surprised us last week by not having an immune system which in turn made us far more cautious about where she plays etc. With chicken pox and measles rife here we don't want to take any risks. As a result Fran didn't make it back to school post chicken pox as she has been quite post viral and low. We did attempt to get to her sports day but her legs were hurting so she only managed to run in one relay before coming home.

Yesterday (Tuesday), Francesca spiked another temperature and so we find ourselves yet again, in the hottest week so far, stuck in a hospital room. They seem to think that she may have a chest infection and are treating that with IV antibiotics. We are also waiting for the results of blood cultures which may tell us if she has another line infection - it almost seems inevitable. When we were at GOS last week we were warned that should she get another line infection it would mean that she will have to have it replaced (not a nice procedure). I will keep you updated.

As usual, she takes it in her stride and, although upset at the thought of being back at Lewisham she still puts on a brave face. Even with a temperature of over 39 she manages to play and show us grown ups how amazing children are. A couple of days ago I managed to get her rapidly growing hair into two small bunches which she is so excited about and so this morning it was the main task of the day! I'll get pictures and post them.

Art Auction and Home - Pictures Added

We made it home on Monday after a very worrying week in hospital. Fran did indeed have Chicken Pox along with a line infection and for a few days was very ill. She was spiking massive temperatures of up to 40.9 and it was a struggle to get them down. Once the virus passed she perked up and the temperatures disappeared however at the time it was a real concern.

Back home we are seeing the community nurses daily for iv antibiotics, these will carry on for at least another week as the infection is still sitting on her central line. I am really hoping that she might be able to get back to school at least for the last week of term but chicken pox and measles are rife here at the moment and we aren't willing to take the risk of exposure at the moment.

Changing the subject somewhat a big THANK YOU to everyone who came along to our Charity Art Auction at the Dolphin in Sydenham. I was unable to be there but I understand that much much fun was had by all that attended and that Hamish Clark the auctioneer was hilarious! The final count hasn't been made but, it looks as though we raised about £2,500 for CHILDREN with LEUKAEMIA which is absolutely amazing! THANK YOU THANK YOU THANK YOU! The money will make a difference. If anyone has any pictures please email them to me.

Here are the photo's - as you can see poor Fran was knocked sideways. The picture above is of Michelle the play specialist with Fran; below are Fran in hospital and Charlie - as you can see where there is food, he is happy!!!

Chicken Pox

Just to let you know that Francesca is back into hospital this morning with suspected Chicken Pox. This is not good news at all. Will keep you all posted and will add new pictures soon.

Back onto Chemotherapy

After what feels like an age, Fran will be restarting her scheduled chemo (it was cancelled last month due to illness and then postponed last week as Charlie really did have chicken pox - we have no idea what he had last month!!!)

This week will be crazy! Tomorrow Francesca goes to Lewisham Hospital for a CT scan which will hopefully show lovely, healthy lungs - she will hopefully then be able to stop a daily medicine she's been on since Christmas. On Wednesday we are going to Great Ormond Street where she'll have a lumbar and we will get to see the consultant. Then on Thursday she'll have her delayed Vincristine and start steroids. I think she will be knocked for six.

When we see the consultant we will be discussing Fran's pain relief - we have found it increasingly hard to manage over the past few months and, whilst we are starting a new drug this week (to help) it is still something that concerns us.

All of the above aside, Fran and Charlie are wonderful and seem happy. Francesca has been able to attend school more often and that is a real benefit to her.

We are looking forward to the art auction in a couple of weeks time - remember, if you want to come book soon!

Thanks for always reading, catching up and supporting us. We really appreciate it.

CHARITY ART AUCTION - 26 JUNE 2008

A good friend of ours has teamed up with the popular Dolphin gastro pub in Sydenham to host a charity art auction on the 26th June (raising money for Children with Leukaemia). Good, local artists have kindly donated their work to be auctioned and the actor Hamish Clark who famously played Duncan in Monarch of the Glen will be our esteemed auctioneer.

You can either book as an individual or indeed rally some friends and colleagues and come as a group taking a complete table. For more information and to see a copy of the publicity please go to www.artdoglondon.co.uk. If you have any queries then give me a call or email me.

Thanks for your support, I hope that you can join us in raising as much money as possible for what, in our opinion, is an excellent charity that really saves lives. Please also check out www.leukaemia.org

The picture shown is of Francesca last July at the height of her treatment - it is emotive but it serves to remind me of how poorly this disease makes children.

Chicken Pox Free

The spots finished coming out on Fran on Saturday so we were able to leave the hospital on Sunday with oral anti-viral drugs. They have stopped all her chemo for the moment and we will re-start on Friday - this was to allow her body to fight the virus as well as possible. The upshot of all this is that she is now really vulnerable to getting Chicken Pox again over the next year as she wont have built up another immunity to it. It is very annoying as we will have to be so careful and because there is a massive bout of CP here at the moment.



It felt like a very long week and Francesca was delighted to get home and couldn't wait to get out into the garden with Charlie!

A message for Jo - Josh's mum

Hi Jo - thanks for your feedback ... I would love to email you but don't have your address as you came up anonymous - my email is jayne.corp@waitrose.com so please feel free to email me direct. I hope you are bearing up with Josh - It will get lots better and the five week steroid period really is one of the hardest times as parents... you will get your happy son back really soon. Love, Jayne

We made it on holiday!!!!!

We were uncertain until the last moment but we were able to pack ourselves up and head off to North Devon via my mum in Bristol for our long awaited holiday.

On the Monday we arrived at our Hotel, The Saunton Sands Nr Braunton (above). It was wonderful. Overlooking a fantastic stretch of sandy beach favoured by surfers we found we had an amazing family suite with an amazing view – Francesca and Charlie thought it was fantastic!

The Hotel had both an indoor and outdoor pool along with playroom, terrace, great food, terrace etc etc....... heaven! Fran and Charlie could hardly contain themselves and once we had checked in the first port of call was of course the pool (no, not the bar for me!!!)!!

North Devon is absolutely beautiful, we found a couple of wonderful beaches where the children rock pooled, built sand palaces and ate sandy bbq food! Without a doubt Charlie’s favourite times were on the beach rock pooling – he had no fear whatsoever, even when falling and getting soaked!

We had the best weather that only changed on Thursday when it became overcast but, even then it was perfect as Francesca’s skin really needed a break from the sun (she has become photo sensitive and only has to smile at the sun to become red!!). So, on Thursday Fran had her special treat.... horse riding!!!! I had found local stables and booked her in and to say that ‘Murphy’ her white pony was the highlight of Fran’s holiday would be a gross understatement!!! She smiled and chatted and chatted and smiled the whole time to the point that the lady leading her needed to remind her to in fact hold on!!!

Friday took us back to Bristol after the most wonderful holiday. The first break since diagnosis that hasn’t been cancelled due to illness.

THANK YOU to all those people who gave their money so very generously to enable us to have such a lovely break. Thank you to Phyllis for unashamedly approaching people and taking their money (I think she asked but you can’t be too sure with that young lady!) We don’t know who you are at all but hope that you will, by reading this, know what a special time we had which without your kindness would not have happened. Thank you.

So, last Friday we returned to mum’s to spend a couple of nights. Charlie had been running a temperature and by the evening was miserable and complaining of a sore neck – Calpol ensued but despite that he had a bad febrile convulsion (he went blue). We were worried but didn’t take him to A&E as he came round and seemed relatively perky, plus he has had a few of these episodes. Saturday morning though we felt he should be checked out so off we pottered. He as fine however, we had suspected that he might have had Chicken Pox on holiday and they agreed that this may have been the case and with that in mind they wanted Francesca to have a blood test to check her immunity to Chicken Pox (she was immune when she was diagnosed but a couple of spots had appeared on her hand).

Sunday we arrived home and the nurses took blood from Francesca – by this stage more spots had appeared on her hands and by Monday morning Stuart and I were sufficiently concerned that she may have Chicken Pox to call GOS then go to Lewisham Hospital – where we are now!
Whilst not covered in spots, she is very very uncomfortable – her blood results who that the chemo has wiped out her previous immunity to CP so they have started her on IV anti-viral’s three times a day.

She is feeling pretty terrible at the moment and her chemo for this month is cancelled. She’ll be in for 7 – 10 days then onto oral medicines at home. Chicken Pox can be really serious for children with cancer so we are glad she is where she is for the moment.

Obviously it has not been the best end to our holiday but at least she was well when we were away and as a family we all have the most wonderful memories of uninterrupted quality family time with lots of fun, sunshine and laughter. We met lovely people, stayed in a lovely hotel and experience our own special family time.

I’ll keep you posted on Fran – enjoy the pictures

A busy few weeks

We had a busy couple of weeks with Fran during her school holiday. Firstly she had grommets put in both her ears at GOS then the following week had her big chemo and steroids and it absolutely knocked her sideways. She was in lots of pain that we frankly found really hard to manage and was desperately unhappy with it. The shame of it was that it meant the last week of the school holidays was taken up with Fran feeling rotten.



The following week however made up for it all when Sarah Jane (CBeebies queen) came for tea! Francesca and her friend Tegan had an absolute ball! Sarah Jane did as the girls told her, had her hair brushed (or tangled!), was taken to the dungeon (Fran's room) and buried under a duvet and cushions plus had a carpet picnic with donuts and juice - all before tea! A really lovely lady who made both the girls feel really special.



Next weekend we go off on our holiday to North Devon - fingers crossed that Francesca stays well and that fun will be had by all. We are planning on going horse/pony riding, swimming, taking long walks on the beach and rock pooling! We are soooo looking forward to it all - thanks to all those wonderful people who sponsored Phyllis in whatever it was she ended up doing!!!!!!

Pictures of Fran, Tegan and Sarah Jane to follow when I find my camera and upload them!

CHARLIE IS 2

Charlie celebrated his 2nd birthday the weekend before last and we had a lovely time.

Family came to stay and a few friends came on the Saturday to celebrate. Francesca was well (hurrah) and we were able to have lots of fun together. Charlie enjoyed opening presents (although the box picture shows that boxes seem to always beat the actual toys!). The children all embraced the chocolate fountain and the bouncy castle - luckily it rained a bit so the kids weren't able to mix the copious amounts of chocolate with jumping up and down like crazy things, it could have got nasty!!!!!

Fran has had a good couple of weeks in general. This past weekend we took her to hospital as she was feeling quite unwell, it appears that she has another ear infection and so we deferred her scheduled operation for grommets at GOS. She was at GOS last week for a routine lumbar and echo which went well and then yesterday had her monthly vincristine (nasty one) along with the usual commencement of steroids.

Both last night and this morning she was suffering with sore legs and arms which I expect to last for the next week or so. Stuart and I have to always make a mental shift at this point of the month remembering that poison has been put into her body so it is understandable that she might feel terrible and quite grumpy. We have also recently realised that Francesca has come to a point in treatment where she seems to 'normalise' her pain so doesn't always tell us when she is feeling unwell. It is quite upsetting as she often tells us at the end of the day that she has had a bad headache or that her limbs have been sore. I imagine this is very usual in sick children. What is does mean is that we have to take her very seriously when she does express pain.

All in all though things are good. We are all looking forward to our holiday mid May and we are crossing everything to make sure we get there!

Enjoy the picutres.

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