The Wedding

Firstly I wrote this post a couple of weeks ago so it is slightly out of date - Fran has another ear infection but all is well and we are at home..... Sorry that it has taken so long to post but I hope you enjoy the beautiful pictures.

We made it to the wedding last weekend! A sigh of relief was heard in our corner of London as for once, Francesca was able to go to something that had been planned. More often than not we have cancelled plans due to infections so it was great to get there.

As you can see from the above picture there were two princesses on the day, the gorgeous and glowing Phyllis and the lovely flower girl Fran.

It was a great day, Francesca and her new boyfriend (pictured) Ethan led the bridal party down the aisle and were perfect in every way. Charlie was as good as gold and once at the reception the children enjoyed running around and having lots of fun.

We approached Easter with Fran on her monthly dose of steroids having had chemo on previous Thursday.... it is hard for us all but for Fran I think it is sometimes unbearable. I'd like to say that she is grinning her way through it but that wasn't the case at all. Easter Day however was spent with friends who cooked for us and plied us with wine and chocolate!

Thank you to all our friends and family who step up to the mark when Fran is on the steroids - it really makes a difference.

A quick blood top-up

Goodness me, we should never assume that we will have a few nights at home!!!!! Francesca will be going into hospital tonight for a blood transfusion as her HB has suddenly dropped. The nice thing is that we will have a rosy faced little girl who is bouncing off the walls by tomorrow! Oh the joy of it all! Hopefully we'll have a quite couple of days after that as I'd like Fran to go back to school by the middle of next week.

Home and Hospital Update

We finally returned home yesterday afternoon after 8 days on the surgical ward (not medical due to measles outbreak when will people learn to vaccinate one way or another?). For some reason it has felt a lot longer and I have to admit that we really did miss not being on the medical ward. Francesca's line infection seems to now be improving and we will have daily iv antibiotics for the next week or so. Her ears are still sore and so the ENT specialists at Lewisham took a look and, yesterday she had a hearing test that showed that Francesca has glue ear in both ears and some impairment of her hearing. I feel a bit bad now for shouting at Fran to get things done after asking several times - she probably just didn't hear! She'll have another hearing test next week and then they'll decide what to do.

Fran had a good time on the ward, the play specialist Viv was great and on Tuesday bought the PAT charity dog into see her (see picture). Francesca absolutely loved that - she is such a big fan of dogs. The nurses down on the medical ward knew that Fran was in so they would keep popping up to make her laugh. The picture above is of Francesca with masses of Barbie dolls and the lovely Dr Mel (who also popped in every day even though she's no longer on the ward) and Amanda (Fran's fav. nurse). Fran took great pleasure in instructing them on what to dress the dolls in and how they were to look!!! I am so grateful for this type of commitment to Francesca because it is often the very small things like that make a hospital stay so much more bearable and 'special' for Fran.

So, we are home. Charlie has missed his sister terribly and we are just glad to all be under one roof again. Community will, as I've mentioned, come every day for the next week and then, fingers crossed we can get back to a relative state of normality. Francesca is well in herself but tired and I won't be sending her to school this week as her immune system has not reached a safe place. She is missing her friends and isn't too keen on my 'learning times' with her! The hospital do provide teachers so I am hoping that they might be able to come in to assist when Francesca's not able to go to school.

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.