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.