Infections and Hospital

Since my last post Francesca hasn't been too well. Last week she seemed quite lethargic and we'd noticed that her eyes were a bit jaundice, this showed in her bloods and GOS decided that we should stop all chemo so Fran's liver had the chance to recover a bit from treatment. Then, last Thursday she spiked a high temperature which was our cue to take her to Lewisham hospital where they started IV antibiotics.


When she gets a temperature the hospital automatically take blood cultures to see if there is a bug growing and if so, what exactly it is in order to treat it effectively. No bug has grown which is both a good and bad thing, good in that she won't need 2 weeks of antibiotics but bad because we're just not sure what's been wrong with her. They have been treating her with a few different antibiotics and all being well, she will be back home tomorrow.


As Fran's had some sort of infection it has suppressed some of her counts - most importantly her immune system (neutrophils), in order for her to start her next intensive period (next Tuesday) these counts will need to recover more - fingers crossed as the sooner we start intensive, the sooner we finish.


As for Francesca, she loves going to hospital as she gets one on one attention from Lewisham's play specialist plus whoever is sleeping there with her! She is in great humour and keeps all the nursing team entertained.


This is a picture of Fran in hospital yesterday making play dough with one of the play specialists. The photo at the top of this entry is of Fran with her favourite community nurse Alison. She is wonderful, Francesca completely trusts her - something to do with the endless supply of stickers Alison provides!!!!!

A little holiday to Whitstable

We have just returned (Thursday) from a really lovely family break away in Whitstable. Our very special friend Kate kindly let us use her cottage so that we could take some time out. It was great. In spite of a bad weather forecast we had lovely weather and both Francesca and Charlie loved being by the sea. Charlie is addicted to throwing stones into the sea and Fran to spotting boats and collecting shells in her bucket. She also had a go at holding a crab with her friend Joe which is very impressive in my books!! It was great that Fran was able to spend some quality time with Joe (our godson, in picutre), they are like an old married couple!

On Tuesday we took the children and a picnic along to Howletts Wild Park - they loved it, Charlie with his new word of 'there, there' was in his element.

We left London on Sunday but not before popping to Lewisham hospital to get some antibiotics as poor Francesca had a urinary tract infection. They took bloods and sent us on our way. Unfortunately by Wednesday evening Francesca wasn't feeling well at all, she was very tired and pale then developed a temperature and was very sick. Her grandad was able to take both Fran and Stuart back up to Lewisham where new blood results showed that she needed a blood transfusion and they started her on antibiotics.

Today we will find out if she has an infection but it is looking most likely that she just needed the blood transfusion so should be able to come home. The thing with some of the chemo drugs is that about a week after them being administered her blood counts plummet and she does need transfusions (please give blood).

Despite the end of the week we had a lovely time.

Beginning of June and MRD Results

Sorry for the delay in this post.

A couple of weeks ago we were back at GOS, Francesca had a lumber for chemo and we received the results of her 11 week MRD. This test takes about a month to process and basically looks at how she is responding to the treatment and monitors her risk of relapse. The great news is that it came back that she is in the low risk category and that, whilst there is always a possibility that she may suffer a relapse, at this time she is in the best possible group of children and should make a full recovery from this horrible disease! HURRAH!!!! This is the most positive news we could have possibly received and we are thrilled!

The positive result of this test means that Fran is able to continue on the clinical trial we have put her in. Stuart and I need to decide over the next few weeks if we want to do this. If she continues to be part of the trial we would allow her to be randomised by a computer which would then say if she was to drop one of her intensive blocks of treatment. It is quite possible that she would be randomised and her treatment wouldn't change at all. We'll keep you posted.

Francesca also went to nursery this week and had a great time as usual! She is really enjoying seeing her friends and, if it wasn't for her lack of hair you'd think there was nothing wrong with her at all!

On Thursday she had a chemo at our local hospital (which has now wiped out her counts again - see next entry).

The picture at the top of this blog is of Francesca with one of the community nurses who come each week. They are fantastic and often have to come every day during the intensive periods of treatment.

Trip to Bristol - 22nd May

Francesca's consultant had said that we would be fine to go for a little break so we left Stuart at home and went to stay with my mum in Bristol. My brother and his family are also there so it was a fantastic break for Francesca (not so much for me as Charlie was still up at 5am every day!) I deliberately took them the week before half term as I didn't want to go to places (like the zoo) that would be too busy. Here are some pictures of Francesca and Theo at Bristol Zoo.

The other photo's are of Fran with Charlie and Theo then with her Auntie Karen who, broke her foot looking after Charlie some while ago. I was in hospital with Francesca (she had an infection) and Charlie was sick at home. At 2am Karen went to help with Charlie and forgetting there was a step down in our hallway tripped, shattering a bone in her foot! We just seem to have such luck in our family!!!!!

A. Anne and A. James

Here are some pictures taken on the 13th May with Auntie Anne and Uncle James! It has to be said that Anne is actually partly responsible for Francesca's pure love of pink!

May and Maintenance

By week 11 we had just come to the end of the 'consolidation' period. When going into this part of treatment we foolishly believed that it would be easier and less stressful than the first five weeks. This was not true at all - not even close! As I mentioned before the consolidation part of treatment is also referred to as 'intensification' i.e. just as much as before, less the steroids. On one GOS day we left the house at 6.45am and didn't get home until 10pm.

Since the beginning of May life has been sooooo much better for Francesca. The maintenance period of treatment lasts for 8 weeks and comprises of IV chemotherapy once a month at our local hospital and a GA once a month at GOS to administer the chemo into the spinal fluid via a lumber puncture. Francesca had to have a transfusion at the beginning of the month but since then her blood counts have begun to recover and for the first time since diagnosis Francesca has had some level of immune which has been a huge relief.

Two weeks ago she went back to nursery for the first time in three months. She absolutely loved every moment!

Here are some recent pictures that show the lovely Francesca as her normal, crazy self with her friend Eva.

Big John

Big John is Francesca's favourite nurse on Elephant Ward at GOS. He is fantastic, completely crazy and all the children love him. Francesca a couple of weeks ago put a skirt on and asked me if she could wear it for John!!! Sadly he has left now to work at a local hospital in Kent so these were pictures taken on his last day with his biggest fan. He has really helped recently to make Francesca's very very long days on Elephant Ward special.

Princess Francesca

Francesca at the end of April in her princess dress

April and consolidation

Consolidation is the second part of the chemo treatment and still very aggressive. We had to go to GOS every week still but on the 3rd April Francesca had her first central line infection and she needed another blood transfusion. We were transferred by ambulance from GOS to Lewisham hospital for the treatment which was fine it was just a pity as it was Charlie's first birthday so we didn't really get to celebrate it as we would have liked. Francesca had to be an in patient for 11 days but towards the end of that time she was at least able to be at home during the day as she was absolutely fine in herself.

Steriods

The struggle throughout the induction period was the effect the steriods had on Fran. She ballooned, constantly wanted to eat and, I think the hardest part for us was the fact that every day when she woke up she told us how sad she was. She is not even four and was feeling depressed, it really broke our hearts.

Her mood did improve quickly once finished but she has only now (week 11) gone back to 'normal'.