Return to Lewisham Hospital

Just a quick update to let you all know that Francesca was admitted to Lewisham Hospital on Monday night with a high temperature and low immune system. Initially it looked as though the awful ear infection had returned but, they have infact grown a bug from Fran's blood that shows another type of infection. The good news about that is that they now know what antibiotics will work. She is currently struggling to sleep at night and is consequently very tired and sensitive - I hope that turns around quickly so that she can get back into a 'normal' routine whilst in the hospital. I suspect we will be in patients for about a week - so hopefully she will be well enough to be flower girl at Phyllis' wedding in two weeks time!

We are absolutely exhausted but take comfort from the fact that we are going on holiday for a week in May and that we are now half way through treatment so can begin to count down to the end.... The picture above is of Fran and her best friend Tegan on the evening she was admitted to hosptial. To the left is of Fran in hospital after her shower.

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Half Term and Chemo

Last week we were at GOS for a lumbar and bone marrow. This was followed by chemo at our local hospital on Wednesday and the start of the dreaded steroids. Fran had also managed to get another ear infection the weekend prior so was feeling a bit fragile from that too! All in all half term wasn't that great! Great Ormond Street took a blood test to look at her immunoglobulin (antibodies I think) to see if that is why she is getting recurrent ear infections. They called us this morning and it looks as though the test has come back showing that it is slightly low but we aren't sure if they will need Francesca to have any treatment - I'll keep you posted but either way I don't think it is too serious.

The steroids had a major effect on young miss Francesca's sleep last week - I am hoping that now she's back at school and that she's off the grumpy medicine she'll start to sleep more solidly. She has started to mention her sore ear again so we hope that it isn't another ear infection!

One Year Anniversary

I can't believe that a year has passed and that life has changed so radically. The vocabulary we use and the expectations we have of life are so different to those we had over a year ago. So much has been crammed in and I almost can't remember what life was like pre-diagnosis.

Francesca has been the most amazing and inspiring child, taking each day in her stride and teaching Stuart and I about courage and bravery. Her ability to continue to laugh even in the tough times has kept us strong and kept us going as a family unit.

We are also completely indebted to our family and friends who, over the past year, have encouraged us to keep strong. Have cooked for us, listened to us feel sorry for ourselves and supported us in such a variety of ways (including the provision of wine for me!). A big thank you to the lovely Maggie who has provided us with a cleaner over the past year - the most wonderful gift! To Phyllis for raising money so that we can have a holiday later this year. For our friends who have kept calling and have been so patient with us when we haven't returned calls or haven't been able to see them. To the lovely Pippa and Alex who made and bought christmas lunch into us at the hospital and for taking me to the Sanctuary for the day. To our parents who, at the drop of a hat, have come to help out when needed.

The past year has been amazing and tough, has had fun times and has been incredibly distressing and stressful. We are so privileged to have the most skilled Doctors and nurses caring for Francesca and know that they have made this year so much more bearable for all of us. Rochelle at GOS is a complete star along with Nick, Fran's consultant.

As you can see from the picture above, Fran's lovely hair is coming back and she is looking as lovely as ever! Thanks for reading and your support over the past year.

Ear Infection

Francesca went down with an ear infection with continued bad coughing on Friday night - we spent the day at Lewisham but were glad when we were told that we didn't need to stay overnight and that she could go home with oral antibiotics. Poor Fran, if it's not one thing it's another. Because of the ear and possible chest infection her lumbar at Great Ormond Street and subsequent chemo at Lewisham have been postponed until next week when she'll have finished her course of anti-biotics.


At the time of writing Francesca is complaining again of a sore ear so we will today pop into the hospital for her to be reviewed and hope that they'll just give her another course of antibiotics. More to follow soon!

School Days

Fran has been feeling a lot better over the last couple of weeks and has managed some complete days at school - the only exception for her not attending the whole day is usually due to hospital and nurse appointments. She is loving PE, lunch time and brings home stories each day that we read together (although yesterday was a Barbie one - not too sure about that!). The picture above is of Francesca and her three pigs and their respective houses which she acted out - this was some of her homework (!) for the month!! As you can see, she really enjoys it though.

Next Tuesday we are off to GOS where Fran will have a lumbar, we are then at Lewisham hospital the following day for chemotherapy and will start the steriods. Knowing Francesca she'll probably be tired after it all but I am hoping that the lure of school will distract her. We will keep you posted!

Charlie continues to be his gorgeous self too. He is beginning to embrace 'messy' play more and more (as you can see from the painting picture!).

Well Done to all at Herbert Smith

The photo above is of the lovely James who, over the Christmas period nominated Leukaemia Research to be the recipients of his works raffle. They all raised £350 in Francesca's name which is absolutely fantastic.

I am planning on hosting a fund raiser for Francesca later this year - the funds will be split between research into Leukaemia and the Children's Medical Ward at Lewisham.... details to follow.

Francesca has been enjoying going to school and is having the time of her life. She is absolutely exhausted but I know already she is getting a lot from it. She had her Vincristine last week so has been slightly sore and was back at Lewisham Hospital last Friday with an ear infection and to receive a special injection to stop her from getting measles (she was exposed to a child with measles earlier in the week). It is still a bit of a roller coaster really but, we have to hope that it will slowly improve.

I am sorry for the slow posts recently - we are knackered ! Fran wakes up most nights and Charlie is awake from about 4 or 5 am each day..... I will endeavour to get back on it though!

Starting Big School

Fran was able to start reception last week. She managed three days last week and three days again this week. Unfortunately she is still on IV medicines so can only go until about 1pm each day. That said, she is absolutely loving it!!! She adores making and then taking in her packed lunch each day and is thrilled that she is in the same class as her best friend Tegan. She brings a new book home each day to go through and has generally made the adjustment brilliantly.

We hope to stop the IV's next week so she will then be able to go for a full day. I think she'll be exhausted but, if the last couple of weeks are anything to go by, she will enjoy every moment!

Here's a picture of Fran on her first day along with a few extra Christmas ones.

Finally Back Home for 2008

Francesca was discharged from hospital a couple of days ago. The results of the CT scan showed that she has some type of infection on her lungs, it could be either bacterial or fungal. She has now completed 2 weeks of antibiotics and so they decided to continue Fran on the iv anti-fungal medicines. The good news is that this can be done at home. The community nurses come in each day to set up and administer it all. Fran loves it as she gets all of their attention for at least 30 mins!

Fran and Charlie had a lovely day yesterday when their cousins in Bristol popped down for the day - lots of running around and eating of biscuits ensued but fun was had by all and it was great to see them!

Francesca is due to start reception tomorrow but we decided not to send her until Wednesday at the earliest as she just hasn't had a break at all over the Christmas period. When she does go she'll only be able to stay until just after lunchtime as she'll need to come home for her IV's. On balance I think that it is a good thing, she gets really tired at the best of times so this will give her an opportunity to break into full time education slowly. The school are really supportive which helps too.

On the 14th we are back up to GOS for a repeat CT scan then up again the following day to see our consultant for the results. We were due to be going for Fran's next lumbar but this has been postponed until she is fully recovered from the chest infection.

Photo's to follow soon when I have uploaded them!

New Year in Hospital

HAPPY NEW YEAR!

We hope that you have a wonderful 2008!

Now for the update. Fran is still an in patient at Lewisham Hospital. She hasn't had a temperature for quite some time so the infection has gone. the concern most recently has been her persistent cough. Great Ormond Street asked that she had a CT scan on her chest which took place a couple of days ago. As it is with these things, there was no one available to look at the scan due to the bank holidays so it will be assessed today and we will have a better idea of what treatment, if any, Fran needs.

As far as we understand at this point, the most likely cause of the problem is a fungal infection in the lungs - this would then be treated with iv anti-fungals (she has already started these). The stumbling block is simply that the treatment is more prolonged than a bacterial infection. We will see.

Other than being really bored in hospital Francesca is on good form. She is able to come home for the afternoon most days which is great for us all. It has been a really hard time for us all as we haven't had any quality time together as a family until for nearly two weeks.

These photo's are from boxing day when Fran came home for a bit.

Fran's got an infection - update

Merry Christmas everyone!!!!!

Firstly, sorry if you didn't get a card from us - it's not that we weren't keen to send out cards to everyone - the truth is it just hasn't transpired this year. We are sorry but know that we still send many many Christmas greetings and cheer to you all!

So, the update is that we are still in Lewisham - poo! Fran keeps spiking temperatures and they are thinking of changing the iv antibiotics they are currently using to try and get everything under control. Christmas morning will be spent with Stuart and Fran in the hospital and Charlie and I getting ready as early as possible to join them both. Hopefully Francesca will be allowed to come home for lunch and presents here. If not it will be delivered to her!

We can only hope that 2008 is much better than 2007!

Keep smiling! Jayne, Stuart, Francesca and Charlie xxxx