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.

Elephant Day Care

Last Tuesday was our long day at GOS. Fran had a lumber and then the long chemo I mentioned in my last entry. In the past we had been at the hospital well into the evening but this week was great. All the chemotherapy was ready and we were able to get started really early on in the day. It made such a difference and Francesca was as good as gold the whole time. It is really great to go to the best children's hospital in the world (my opinion obviously!) but the hospital is only as good as it staff and those at Elephant Day Care are fantastic.

The picture above is of Francesca with Rochelle and Kathy. Rochelle puts up with my neurosis when I call with my concerns, she also manages a lot of Francesca's care for us. Katharine is just a star, she is brilliant and is always sympathetic. The lovely thing is that 6 months into treatment Francesca looks forward to her trips to the 'big hospital' even when she's not allowed any breakfast. The only set back we met with on Tuesday was that a blood culture taken the day before had shown that Francesca's line infection hadn't cleared. This means that she needs an antibiotic to be 'locked' into her line for 24 hours at a time to try and clear it. She has had this type of infection before and the antibiotic worked so we are sure it will be OK. Nick Goulden, Francesca's consultant, feels that, as Fran has had so many infections, it might be worth replacing her central line. I find it slightly upsetting as it just isn't very nice for Fran and I would prefer for her to not have to experience this again. However, we have to look at Francesca's quality of life and, if she keeps getting infections, we should go with the options that will minimise further disruption.


The picture below on the left is of Francesca at a local park playing in the fountains and then on Tuesday at GOS.

Back on Track

We were discharged from Lewisham at the end of last week and sent home with antibiotics which the community team are able to give once a day which has been great. It is always really lovely to all be under the same roof. It becomes a very disjointed way of living when half of the family is in hospital.

Francesca is on really top form and is counting the days to her birthday. She is very excited by it all and has a bike as the top of her birthday wishes (and you know she'll get it too - it is pink and called Molly)!!! She has had a good weekend and has enjoyed running around with Charlie creating havoc.

We look set to continue with the chemotherapy this week up at GOS. Tomorrow Fran will have a particularly long day. She will have a general anaesthetic so they can give her a lumber this will be followed (once she's awake) by a drug called Cyclophosphamide. It takes just half an hour to go through but, due to the potency of it, they have to administer 4 hours of fluid through her line. It is a long day - I'm hoping that all the drugs will be ready for her so that we don't have to wait for too long before they are administered.

We will also start another chemo drug that is given through her line on a daily basis for four days called Cytarabine, this can be given by the community nurse at home. Unfortunately it means she'll have it on her birthday but all things considered that is our most favoured option.

These drugs are ones that, in our experience, do take their toll on Fran. Fingers crossed she'll cope with it all well. These pictures are of Francesca with her lovely friend Albie and at the park last week.

We clearly love Lewisham Hospital??! - Third and hopefully final installment

The results of Francesca's blood cultures have shown that she does in fact have a line infection. The good news is that this can be treated by IV antibiotics just once a day and we will by tomorrow be able to manage that so that we can be at home which is great news.

This morning Fran needed to have a blood transfusion which takes about four hours. We are lucky to have such brilliant play specialists as instead of getting bored Francesca sat with Sharon and madeplaster, perspex painting, normal painting, sticking, stars, flowers, decorated biscuits etc.. In fact at one point a registrar came in and commented that Francesca is a future Blue Peter presenter in the making!

Yesterday when Francesca was having her central line accessed (not a very nice procedure) she shouted at the nurse "STOP", we assumed she was in pain and when I asked her what was wrong she replied "I've got a wedgie!!" So you see, her sense of humour is still paramount.

Another added bonus is that Francesca's most favourite nurse has been on duty today - Fran loves Amanda, who is shown in the picture above. Below are pictures of Angela, Fran's nurse for today, administering her antibiotics and Sharon, another of the great play specialists.

Without being a bore, I just want to remind any readers that giving blood really does save lives and make a difference. Please do go for it if you don't already. Thank you. x

We clearly love Lewisham Hospital??! - Act Two

Well, we got home from Lewisham on Sunday. Francesca hadn't had a temperature for over 24 hours so we were discharged - yippee!!!!! Until....... Monday.

Yesterday I had a call from the hospital to say that a blood culture they had taken on Saturday had shown an infection that would most likely need to be treated (these blood tests typically take 48 hours to grow any infection) so could we pop back for another blood culture to be taken. Francesca and I popped in only to be told that actually we'd need to stay as Fran needed to start 3 different IV antibiotics that night. It has meant that we haven't been able to go to GOS today for chemo as her counts aren't good enough and they need to ascertain exactly what type of infection Fran has to treat it accordingly. If it is a central line infection it is really important it is dealt with as efficiently as possible.

It looks as though we could be in patients for up to ten nights - hopefully we will be out in time for Francesca's birthday. The doctors are great though and with them we will manage her treatment to allow Fran as much 'home time' as possible. The community team will be able to come to our house and administer some of the antibiotics so at least we're not stuck in Lewisham.

We are so lucky, I've said it before and will many times again, but Francesca is wonderful at taking it all day by day and accepting that this is life for now. She's not naughty, she sometimes gets bored and cross but on the whole she really is the smiling girl you see in these pictures! (and yes, I am a very proud Mummy!!)

Stuart and I are actually quite pleased that something grew in her cultures as we were beginning to become quite concerned that she was getting temperatures for no apparent reason - not that we like spending time at Lewisham but at least we know what we are dealing with.

We clearly love Lewisham Hospital??! - Act One

Francesca finished her batch of steroids on Tuesday morning. During the weekend and mainly on Monday she was complaining of not feeling well, with sore legs a headache etc..... I put it down to the chemo and steroids (she has one called Vincristine that makes her joints sore). She had a temperature on Monday night but it was gone in the morning so we left it. Fran was still complaining a bit by Wednesday so I called the lovely Rochelle at GOS who said really she should go to hospital for a review and that she'd probably need IV antibiotics. So, that's where we are! As is often the case with these things they don't seem to be able to find the source but it is likely there is an underlying infection somewhere. Hopefully Fran will have a temperature free day today so that she can come home on oral antibiotics tomorrow (supposed to be a really hot day so we'd rather not be in the hospital)!

Francesca is in great humour though making cards and paintings for all the Nurses and Doctors - she likes to leave her stamp at Lewisham each time we visit!

The pictures here are of Fran and Charlie on her bed then Franceseca and the most wonderful play specialist Michelle. Michelle (along with Sharon and Vicky) is fantastic, she takes so much time out of her day to spend with Francesca, bringing along puppets, paints, sticking etc. The play specialists at Lewisham are just brilliant! The impact it has on Francesca's stay is nothing but positive so we are really grateful for them.

Back into the Swing of it.

Fran has started back regularly at Great Ormond Street for her next batch of intensive treatment. The first couple of weeks went well, then last week she got an ear infection which, fortunately has been treated with oral antibiotics (no in-patient time!!). She was back at GOS on Tuesday and is on steroids again for a week, the dosage is fine for her so she's not having the stomach problems of a couple of weeks ago.

It has been a tough week for us all, Francesca has really struggled and has been quite down. Her legs hurt along with her tummy and this week she has just been saying that she feels unwell meaning I have to carry her a lot. It is to be expected so we're not worried about it. Her blood counts are coming down as we want but the good news is that her red count has stayed reasonably high so we've not had to have any transfusions thus far!

Today (Saturday) she seems a lot better. She'll finish her steroids in a couple of days time (thank goodness) and then we'll be back to GOS on the 7th August.

We had a little birthday party celebration for our friends and young Miss Francesca was the baker in charge of making the cakes. Despite her general discomfort she seemed to enjoy it.

It has to be said that Fran really has embraced her understanding of Leukaemia. Last week I told her that one of her friends couldn't come round to play as they were quite poorly her response - "Well Mummy they might have a cold, but I've got Leukaemia!!!!" - Taking it to the max, that's my girl!!!!!

Here we go again!

Francesca started her new block of intensive treatment last Tuesday at GOS. This is almost a repeat of the first 8 weeks. On Tuesday she had bone marrow taken and a lumber for chemo followed by another chemotherapy drug through her central line during which she coped really well. Wednesday bought about more chemo at Lewisham hospital and the start of steroids (7 day course). The steroid dosage made her really poorly with stomach cramps and lack of energy, poor Fran was up from about 2am each night in pain and didn't really get any more sleep after that. I spoke to GOS and on Friday night they lowered the dose, yesterday she was still feeling really rough but, the good news is that today she is back to normal! We always knew that going back into the intensive treatment was going to be a shock and we really had forgotten how hard it hits her.

Fran is due to go to GOS most Tuesday's for her treatment over the next period but these may be delayed due to transfusions etc. Fingers crossed she will continue to respond well to all the chemo and take it in her incredible stride.

Stuart and I had a good conversation with her consultant on Tuesday and he is still really positive about how well Fran's doing so although it is going to be really hard work over the summer months we know that the treatment is doing what it needs to and that our beautiful girl will be absolutely fine.

Other lovely news is that A. Anne and A. James got engaged a couple of weeks ago and young miss Francesca was the one to do the asking for James. All very romantic and great fun - Fran's very much looking forward to being a bridesmaid next September!!!!

Photo's here are of Fran with her Uncle Steve who came to stay last week - she loves him very much! Plus Francesca at the park this morning.

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!!!!!