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.