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

Fran's got an infection!

Hi all, just a brief note to let you all know that young miss Francesca has been back in hospital since Friday. She spiked a high temperature Friday lunchtime so I whisked her down to Lewisham. Once they had taken blood it transpired that she hasn't got an immune system at the moment (due to chemo) which is the main reason for the infection.

Poor Fran, she was due to go to CBeebies live yesterday as a treat for being so fantastic this year and couldn't. Instead I organised for her room in the hospital to be filled with wonderful flower balloons!

As long as her blood cultures don't 'grow' anything and her temperature stays down she will be home for Christmas Eve - fingers crossed as I would be so sad for her if she has to wake up in Lewisham hospital on Christmas morning.

Christmas Cracker Fran - update

Hi all

Just to let you know that I have finally been able to put Francesca's Christmas Cracker video onto You Tube - the address is http://uk.youtube.com/watch?v=8__nD--88w4 - the quality isn't as good as I have on my camera, but you get the gist! Enjoy!

Christmas Cracker Fran!

The pictures say it all! Francesca as a beautiful Christmas Cracker at her school play today. She was great! Fran has been really looking forward to it and, with her Nana's expert help we were able to put the cracker costume together. Charlie wasn't too keen on watching it all but at least we got to stay for Fran's part of the play. I have been trying to upload a video of the song but it isn't working - if you want a copy just email me and I'll send it jayne.corp@waitrose.com.

We have just been to Lewisham hospital for chemo so the next few days will be rough for Francesca (the steroids are starting too) - I am hoping that the promise of Daddy's Christmas party on Thursday and the CBeebies Live show on Saturday will be enough to keep her going. Whilst at Lewisham Francesca was lucky enough to get the opportunity to sit on a Millwall player's lap - we gave her a sticker for being so brave!! Millwall go onto the Children's medical ward every year so Francesca got to say hello to them and have her picture taken!

Many more pictures to follow this week so keep looking!

.

Countdown to Christmas

It is almost here and the anticipation in our house is already mounting! Francesca is certainly at the age where this is big and real - Charlie is going along with it all (especially the chocolate advent calendar) and Stuart and I were pressured by them to put the tree up a whole week earlier that we would have normally!

Francesca has generally had a good couple of weeks - she has had a really bad cough that has been very persistent and has kept her up at night. She often comes into see us which is disruptive for everyone. I hope that it is simply a post viral thing and that she'll bounce back next week.

Next Tuesday we are due to go the Lewisham Hospital for chemotherapy and the beginning of steroids. My hope is that with the excitement of Christmas Francesca's aches and pains (and bad mood from the steroid) won't be too exaggerated. We have Stuart's work children's party next week (which is simply amazing) and Fran's school play where she is leading the train dressed as a Christmas Cracker, so there is a lot of fun to be had in what is usually a hard week for Francesca. There will be many photo's to follow as the camera will undoubtedly be out constantly next week!

I will post again the middle of next week with an update and Christmas Cracker photo's!

Meeting Sarah-Jane

The biggest treat of the year by far took place on Saturday..... Meeting the screen goddess of CBeebies Sarah-Jane Honeywell. Francesca and I went to the Horniman's Museum here in Forest Hill to meet Sarah Jane, it was fantastic!

When we first walked in Fran gave Sarah Jane a little shy wave but by the end of our time she had Sarah Jane running around racing and generally going crazy with her. Sarah Jane hadn't been to the museum before which was great as Fran took it upon herself to give her the grand tour! Francesca felt so very special and is so glad to have her new friend (who gets on telly with the help of the magic fairies don't you know!) Sarah Jane has also organised complimentary tickets for Fran and her friend Tegan to go to the CBeebies Live event at Wembley this Christmas, the tickets are VIP ones so they'll get to meet other CBeebies presenters and characters. We are so pleased for her and so grateful to Sarah Jane - it made the end of a really rough week worth it!

Here are the photo's.... Yes, it was cold and Fran's scarf did need to be wrapped around 3,000 times! Oh, and Sarah Jane's web site is http://www.sarah-jane.biz/.

Francesca's Current Treatment

As I chatted to a friend yesterday she was surprised that Francesca is still having chemo as I had previously said in the blog that she wasn't due any treatment until January next year. To clarify, Fran still has a 'big' chemotherapy drug once a month (Vincristine). At that time she receives five days of steroids - this will happen every month until the end of her therapy in April 2009. She also gets daily oral chemo at home every day unless altered by GOS. In January she'll go to GOS for a lumbar and to see her consultant.

This week then was the week for all of the above! On Tuesday we went into Lewisham to receive the therapy and start her steroids - I have to be very honest and say that it has been a terrible week. As I have mentioned before, Francesca is sensitive to all the drugs she receives and this week was no different. She has been suffering with bad joint pain in her legs and the steroids have a horrible effect on her. Fran isn't able to rationalise things when on the steroids and everything is a BIG issue. She cries a lot and feels terribly sad and says that everything is her fault. This isn't true but that's how she feels. Stuart and especially me have found it really emotionally hard this week. Everyone very kindly says how well she is looking (and she is) now that her hair is returning and she has colour in her cheeks but, the reality is that she will have to go through this process every single month until she ends therapy. On top of this, I have had to chase and chase our local hospital to get the drugs ready on time. Some months we will cope with it better and some we won't!

I feel a little bit bad about posting a more negative post but want for you to understand that it isn't all plain sailing and, at the end of the day, if Francesca doesn't continue to receive this treatment the Leukaemia will return. We plod on and very much look forward to the Christmas break.

On a more positive note Francesca is having an AMAZING treat tomorrow. She will be meeting Sarah Jane Honeywell (the royalty of CBeebies - if you have kids you'll get that!!), she is very excited!!!!! I will post photo's over the weekend so you can see just how big Francesca's grin will be!!!

Tricks and Treats!

Firstly, I know! The blog update has been a long while coming - sorry to all!

Francesca had to go into Lewisham hospital a couple of weeks ago as she'd spiked a temperature and had no immune system. They started her on three different IV antibiotics which seemed to do the trick. The problem for us was that we had organised a halloween party for her and her friends on the Wednesday and she was still an in patient. After some discussion and to my relief Lewisham agreed that she could go home for the party with her friends. She was discharged the following day anyway.

Fran's party was a winner - she had an absolutely fantastic time. All her friends came dressed up and played all the games including marshmellow in flour, hand in jelly etc. You can see from some of the pictures that they all had a ball.

Last week we were at Great Ormond Street where Francesca had a lumbar, she is still neutropenic so hasn't had any oral chemo for a few weeks but they felt she'd be fine for the lumbar. That all went well and the good news is that we won't be going back until January 15th!

Francesca has only six weeks left in nursery and then after Christmas begins Reception. It's all working out well with her treatment as she won't miss too much school.

Charlie has been poorly for the last week and then yesterday had a febrile convulsion caused by a high temperature. The doctor seems to think that it is just a virus so he should improve as the week goes on.

The pictures here are of Francesca and Charlie at the beach a couple of weekends ago and of Fran's party.

Loving Lazytown Live!

Francesca was ready for half term this week. She has been tired and needed to have a break. Ages ago we booked for Fran and her friend Albie to go off to the Hammersmith Apollo and see Lazytown Live as a reward for being so brave over the past year. I didn't tell her until Monday as we were never 100% sure that she'd be well enough but she was and she had an absolute ball. Both Albie and Fran had a great time, they laughed at the characters and became completely consumed by the fun of the show - I think us mums enjoyed it just as much!!!

On Tuesday afternoon we were in Lewisham hospital for bloods to be taken and for Francesca's chemotherapy. Vincristine (the chemo drug) makes poor Fran feel rotten and she suffers with joint pain, it is compounded by the steroid that she then takes.

She currently has hardly any immune system which was a surprise to us - we have been assuming that it wouldn't drop like this again but it is apparently to be expected and will recover over the next few weeks - fingers crossed she won't pick up an infection as so far, we have stayed out of Lewisham Hospital for a while now.

Life is otherwise good, Charlie is saying much more and uses 'no' quite frequently! He has taken to helping himself to food from the larder so we only now leave rice cakes in easy reach - I think he may have gone off packaged oxo cubes! He is waking up really early at the moment (4.50am today) so the challenge for the weekend is to break that habit before it becomes too established.

The pictures shown are of Francesca and Albie at the wonderful Lazytown on Tuesday and then of Fran with her Nanny and Grandad Corp at the weekend.

.

Settling into October and Maintenance

Sorry that I haven't posted for a couple of weeks - life has been hectic. Francesca recovered from her operation very quickly and no longer mentions the fact that her port is now on the other side of her chest. The cuts the surgeons made have also healed really well and they don't bother her at all. Fran has been back to nursery as normal and she has had a good term there. In fact it is the most she has been to school all year so we are really glad.

We were at GOS last Wednesday for Fran's lumbar which all went well although it was a little bit sad as we said goodbye to a very special doctor who will be leaving at the end of this month. Marina (pictured) was the first doctor I saw when we arrived in the dead of night at GOS on the day Francesca was diagnosed. She was so very kind to both me and Francesca. She has since then seen Fran regularly when we have been up at the hospital and she holds a very special place in our hearts for being so wonderful - she will be missed by us.

Francesca's hair is continuing to grow and it won't be long until we will be busy buying hair clips again. She still complains that her legs hurt and she'll be having Vincristine next week which is a chemo that seems to make them quite sore. It will be half term though so shouldn't stop her from going back to nursery the week following.

Stuart and I have been feeling really tired recently, I think that the weight of the last 9 months has started to take its toll. As is typical of these things, it is only when life begins to slow down that the stress seems to catch up. We will look forward to having a break over the festive period and relaxing as a family.

Anyway, the photo's here are of Francesca bouncing on a trampoline in our friends back garden - we went for lunch a couple of weeks ago and Fran had a whale of a time bouncing. Also a picture of young miss F with her cat outfit on - we are having a small Halloween party and this is what she'll be wearing!

!

Central Line Replaced

Fran went to GOS for a scheduled operation on Friday to replace her central line. We were expecting her to need two ops for this, one to remove and then another to replace but the wonderful Rochelle at GOS orchestrated it so that it could all be done in one procedure.

Simply, they took the central line from Fran then relocated it to the other side of her body. The operation took about 2 hours and it was very stressful for Stuart and I as we waited for her. Francesca has had lots of GA's before but they only usually last for 20 mins. When she woke up she was in a really bad way and just sobbed for ages, her throat was hurting along with her neck and her sides - it was very sad to see her like that. Once we got back up onto the ward she slept and then after a few hours she was chatting away and, although very sore she was on quite good form.

Since Friday Francesca has been feeling quite under the weather, she started again on the steroids which disrupt her sleep so means she is tired during the day and really needs a good rest. Stuart and I have also accidentally knocked her sides when picking her up which has been painful for her.

All that said, she went back to nursery this morning and had a good time. Interestingly she has mentioned that she thought she sometimes looks strange with no hair. We can only assume that another child has made a comment (understandably because, that's what children do) and that she has taken it on board - it was sad to hear though as we never want her to feel like that. The reality is that Francesca looks absolutely stunning with no hair and it is almost hard for us to imagine what it will look like when it comes back! Her eyelashes have already returned to beautifully and her hair is coming back :-)

The photo's above is of Fran and Charlie last night before bed, below are of Francesca post operation at GOS and her at home the following day.

Into Maintenance

Francesca and I popped up to Great Ormond Street on Tuesday but didn't in the end have any chemo as she had a strange little rash on her leg and shingles needed to ruled out (which it now has been). We now know that Francesca will have an operation on Friday 28th September to remove her central line then, a couple of weeks later, another operation to replace it. The hope is that with a new central line infections will be minimised and Fran can return to a much more settled way of life.

Fran has been at nursery for most of the week and has had a great time - it feels like, for the first time in 7 months, that we might be returning to 'normal'.

Maintenance will start next week, this will mean going to GOS just once every 3 months for lumbar and will continue until the end of April 2009. In between all of that will be monthly chemo at our local and oral chemo daily at home. We feel positive going forward that Fran will keep infections at bay and that she won't need so many transfusions.

This is short and sweet but keep checking in as more photo's and news will follow!

Party Time

We celebrated Francesca's birthday last weekend. She had a ball. All her friends came along with parents and, what with the glorious weather, fun was had by all pinning the tail on the Lion (tribute to Lion ward at GOSH), musical statues and pass the parcel.

Here are some photo's:

Some Good News!

Francesca came out of Lewisham hospital on Saturday; they weren't able to find out what had caused her infection but she kept her temperature down and was able to be discharged which was great - she was getting really bored and ready to come home.

On Tuesday Stuart, Fran, Charlie and I went up to Great Ormond Street to meet with Francesca's consultant to decide whether Fran would continue in the MRD trial. After a good chat with Nick we were keen to continue as there would be a possibility that Francesca, once randomised through a computer, might be able to drop her last intensive block of treatment (it is completely random and utterly 50/50). There is good evidence to show that in Francesca's situation it is not always necessary to have the last intensive block as it doesn't change the outcome. There is always a risk of relapse with this illness but we are confident that the trial will not effect that. So, Fran's details were all put into the system and we were informed on Tuesday evening that she has been selected to drop her last intensive and will now be on maintenance for the remainder of her therapy. We are thrilled.

It is important to remember though that she still has a lot of treatment to go, this result however means that Francesca should be able to get back to 'normal' with nursery and activities.

One other thing that we needed to talk to Nick about was replacing Fran's central line. It is fair to say that she has had a tough time with it and many of her infections have been line related. She will need one operation to remove the contaminated line and then, a few weeks later another op to replace it. The procedure takes place at GOS and won't be terribly nice for Francesca, we hope that it will happen in the next month and to get a date next week.

Young Miss F went back to nursery yesterday and had a fantastic time, she sang all the way there such was her excitement. We hope that she'll get to spend as much time as possible at nursery before starting reception in January.

This weekend will be Fran's 4th Birthday party. We deferred last month as we thought she might be too poorly from the intensive chemo - she is really excited at the prospect of all her friends together at her house - wish me luck!!!

The photo's above is of Fran with her friend Tegan at home this week. Below are of Charlie and Fran with their Nana last weekend after we got back from the hospital and of Francesca in her hospital room.

Infection and Transfusion

Just a quick note to let you all know that Francesca has been back at Lewisham Hospital since Tuesday. She had a really low HB but v. high temperature. They were able to give her a blood transfusion yesterday but unfortunately she is still spiking temperatures. The temperature is most likely due to another line infection but we won't know for a couple of days. In herself Francesca is on generally good form. A bit precious (what's new) but on good form.

I can only apologise for the brevity of this entry but will update as we know what's going on.

Charlie

I thought it was about time I posted a little something on our gorgeous son Charlie. We desperately try to ensure that we balance our time and attention with the children (as does any parent), however in our situation we find that he can sometimes be slightly overlooked. As we are often to and fro'ing from the hospital at a moment's notice he is left waking up with a grandparent looking after him wondering where we are and more importantly where his big sister is (we are lucky to have great grandparents who are able to step up to help at short notice).

Charlie turns 17 months old tomorrow (3rd) and he is our little lovely monster. He climbs everything possible and attempts impossible feats of bravery! If he can grab it, he will. If he can eat it, he will. Charlie can trash a room in about 30 seconds flat (with much help from Francesca). He has a great sense of humour, is a charmer and uses it to gain much attention. At the moment he is a very keen on being held which is hard work, he just wants lots of cuddles from me and gets very cross if I am unable to give them.


He is ultimately a fantastic cheeky monkey who absolutely adores his big sister, copying most things she does. We have been so lucky to have a younger sibling to Fran who is so laid back and accommodating. One of the best times of day in our house is bath time, as they both have great fun splashing about creating chaos!

It is no surprise that he sometimes gets fed up with the constant hospital trips. We are hoping that during Francesca's next maintenance period she will be able to go to nursery more often, this will result in me being able to spend much more quality time with Charlie and go with him to playgroups etc.

Anyway, here are some pictures of our little man, who we all absolutely love and adore.

Yo-yo'ing to Hospital

The last couple of weeks have been much of a yo-yo into hospital. First we had antibiotics that needed to be administered in the early hours of the morning. Last Friday Francesca needed a blood transfusion so that took place and then earlier this week I took young Miss F into Lewisham as I was slightly concerned about some bruising on her legs. At the time of writing they still are not sure what is causing the abnormal results in Francesca's bloods and want to take further bloods at GOS on Monday to do more specific tests to ascertain the cause. The general feeling is that it shouldn't be anything to worry about but, as you can imagine, it is important to cover all the bases.

The good news is that through all of this life has been relatively 'normal', Fran went to her friends birthday party last Friday afternoon and had an absolute ball. Today (as Stu is off) we all went to the beach and had a lovely day, the sun was shining and, despite popping into Lewisham Hospital a couple of times, we had a brilliant day. We are so lucky to have had the opportunity to get away as usually when Stuart is off Francesca ends up as an in-patient at Lewisham.

The next few weeks hold an important decision for us as to whether we will continue with the MRD trial. We are still undecided. We know that we want to minimise Fran's chemotherapy but at the same time we have concerns that should we do this she might relapse and may have benefitted from the second delayed intensification period. We will let you know what happens. What is good is that we trust our consultant and the staff at GOS so know we will be given the best possible advice and information. We were due to go to GOS next Tuesday but that has been deferred until the following week.

Photo's here show Francesca with Spencer our neighbour at Eva's birthday party last weekend; Fran with Stuart and then Charlie (on the only hot day in weeks).

FRANCESCA IS 4 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hooray for the Birthday Girl!!!!!

Francesca turned the grand old age of 4 on Friday and it was great. She has had the best weekend of her life so far!

On Friday she was up and looking forward with great anticipation to finding a bicycle somewhere in the house! She was thrilled to find it in the back room and couldn't wait to take it for a spin! So, Friday morning we all went off to Kelsey Park and (as you can see) Francesca took to the road - the only thing is, she is like me, she has a need for speed.!!! Pizza followed the park along with lots of ice cream and a pink candle.

On Saturday Francesca's cousins Tim and Theo came to celebrate and other friends and family, they had a fantastic time. Fran was keen to show her bike to the world but, now she is four, seemed very good at sharing it too. Her Nana (my mum) made her a wonderful pink cake which was duly demolished by the ravenous hoard.

All in all young miss Francesca has had a brilliant birthday. One we hope she will always remember. Thank you for all your birthday wishes, cards and gifts and for making it so special.

Here are lots of pictures to give you an idea of Fran's special weekend.