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!

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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.

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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!

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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.