END OF TREATMENT

I am so sorry this has taken so long to post and for the lack of photo's. My computer has been broken for a few weeks hence the delay... anyway...

It is with a big sigh that we have reached the end of Francesca's treatment. It has been a long journey but, last Wednesday Fran made it to the end.

Two weeks ago Fran spiked a silly temperature which meant she was in hospital for a couple of nights - it amounted to nothing but did put back her last lumbar puncture. So last Wednesday we made our final visit to Safari Day Care for her lumbar and final bone marrow. What should have been easy was a bit of a task - it took four attempts to take blood before her general and three attempts to take the bone marrow. Poor Fran was terribly upset when she woke up and very sore. Rochelle said that it seemed her last treatment pretty much reflected how all her treatment has been! Rochelle called us on Friday to check on Fran (who was absolutely fine) to let us know that the results of her bone marrow were negative for leukaemia. It is with great joy that we can announce FRANCESCA DOES NOT HAVE LEUKAEMIA!

So, what's next? Well Fran will continue to go to Safari but just to the clinic side of things to see Rochelle and her consultant Nick - that will be every month or so to begin with and will then slow down. In six months time she will have to have her pre-school booster and her MMR booster. It can take up to six months for the bone marrow to recover itself post treatment so we still need to be careful around chicken pox and may still need to go to Lewisham Hospital if she spikes a high temperature. I am hopeful though that she will be fine now.

The pictures I have attached are from Bank Holiday Monday. Our very special friends Sam and Pete planned a surprise party in the park. Many friends from Fran's school were there and a great time was had by all. In fact, the party continued back at our house!! As you can see, the children had a ball with games and prizes. Thank you to all who came and made it very special.

This blog will continue and we will use it to keep everyone up to date with Francesca's recovery and with young Charlie's high jinx. Charlie has been an absolute star over the past two years - he is the best little brother going. Please continue to look at this blog and mark yourself as a follower!

Thank you for all your support. Jayne, Stuart, Francesca and Charlie xxxx

Racing for Life!

Just a quick note to let you all know that I will be taking part in the Hyde Park Race for Life - Please feel free to check out my sponsor page which is www.raceforlife.org/jaynecorp.

Charlie's Birthday, Last Vincristine and line removed!

It has been such a busy few weeks. Charlie turned the grand old age of 3 (going on 13) a couple of weeks ago and the party lasted a good few days. Saturday with his friends and fantastic weather, Sunday with the family and Monday a trip to Hamleys with Birthday money!

On the Wednesday we were at Lewisham Hospital for Francesca's last ever vincristine and last set of steroids - it was a bit strange to think that we won't be making the regular visits to the ward and a little emotional to realise that we have just a few weeks until the end of treatment.

Fran has still been having daily antibiotics due to her previous line infection and, as we expected, GOS wanted the line to come out sooner rather than later. So, the wonderful Rochelle organised for that to be this week and it came out on Wednesday!! So, Fran has no wiggly any more! She's just got a cannula in her hand for iv's but that will come out today. In less than three weeks we will have finished treatment and we can't wait. We do go from excited to anxious but, in the main we are excited.

Here are some long overdue pictures - Charlie's birthday, Easter, GOS this week and others... x

In our own beds!

It was great on Monday night to be informed that we could go home! Initially we didn't think it would be until Wednesday so was a real bonus to find ourselves all under the same roof after 10 days in hospital.

Fran is now on iv antibiotics at home until next Monday when we hope everything will then be clear. Unfortunately we haven't been able to go back to school this week though as there is a lot of Chicken Pox and other viruses doing the rounds in the playground and we are not prepared to take the risk of Francesca picking up another infection so close to the end.

The great news is that we will all be able to enjoy Charlie's third birthday this Friday. We are planning a weekend of celebration with a children's party on Saturday and family party on Sunday. It will be lovely to see some attention firmly focused on him.

Next week we will be back in GOS for a delayed lumbar and we will hopefully find out then what is going to happen with Francesca's central line.

We will, as ever, keep you posted.

Still in hospital.....

Fran's test over the last week haven't given us a clear reason why she has been so poorly. She continued to spike temperatures until Thursday morning and they have, fortunately, now gone. Last Sunday the hospital introduced a couple more iv antibiotics and then on Wednesday one was changed to an anti-fungal iv. Whilst she's not had any more temperature spikes we were today told that she has grown a bug in her most recent blood culture - this usually means that she has a line infection. It could be that she has had a virus over the last week and that this culture is simply contaminated or it could be that she has developed a line infection over the last week in hospital. We just aren't sure at this point. Obviously, we hope it isn't a line infection as it will mean a premature removal of the line, it will also mean more time at the hospital which we are now fed up of!

Fran is in good spirits though - a bit tired but all in all good. Stuart and I are tired and I am desperate to have the four of us under one roof soon! With Charlie's third birthday at the weekend we are working hard to make sure we are all home.

Will keep you all posted. x

A stumble at the final hurdle

With the finish line in sight it has been a shame that last Friday Francesca spiked a high temperature and was, for the first time in a while, admitted to Lewisham Hospital. We have been there since and at present aren't entirely sure what is causing her temperatures. It could be a virus or, most likely another line infection.

We know from GOS that if she were to get another line infection they would remove it prematurely which is a real shame. The most important thing though is that we get as much chemo into Fran over these final few weeks rather than stop the chemo due to illness. We understand the risk ratio but it still doesn't make us feel great.

Over the last couple of weeks she has had quite a lot of bruising which has concerned us a little - both Lewisham and GOS have tried taking peripheral bloods to see if her blood clotting is slightly off but we have so far been unsuccessful. Hopefully we will repeat this before we leave Lewisham this week.

In our minds we are hoping to be discharged mid week - we are certainly not planning on being in-patients for Charlie's third birthday on the 3rd of April!

Up to date pictures to follow. x

Snow, School and Half Term Fun

It has been busy, busy, busy here so apologies once again for the delayed posting!

Firstly, I have posted some great photo's of Fran and Charlie in the snow - they loved it!

Francesca has been really well, she had a chemo postponed a week last month as she had a rash on her legs and the hospital didn't want to risk her becoming unwell. It amounted to nothing but did mean that when we went into half term Fran wasn't on steroids so on that level it was good. The new steroids Fran is taking really are an improvement, she does seem to become quite 'manic' but, that aside we are glad that she isn't experiencing the depression the dex was causing.

She has been able to spend so much more time at school and it has been a relief to see her settled in and enjoying it so much. Her teacher Lorna is really great and she is beginning to develop new relationships in her class.

Stuart took the week off for half term so we were able to spend a few days in Bristol before returning on Wednesday for Fran's vincristine. That all went well and towards the end of the week we popped to a safari park in Kent with Fran's best friend where fun was had by all.

We are now looking directly at the end of treatment. With just two more doses of vincristine to go it seems impossible to believe that this part of our journey is coming to an end. The lows have been really low but I know (as I have said many times before) that they have made our family stronger. We are so excited that we are at the end but nervous about the first few months after treatment. It will be great and we will be celebrating with a big end of treatment party - date to follow.

Here are the latest pictures.

Quick Update and LONG awaited photos!

Over the last couple of weeks we have popped up to GOS a couple of times with Fran. The first visit was a scheduled one to meet with Nick and to talk about her continuing line infection - we agreed that if it didn't clear up then the line would be removed and she would finish her treatment without it. Fortunately her blood cultures are negative meaning the infection is now gone... Thank Goodness. Yesterday we went up again for Francesca's vincristine and to chat again with her consultant about restarting the steroids. She'll be taking a slightly different steroid and we hope that by doing so, she will not suffer the major side effects she has in the past.

Fran has been well in herself but post her chemo this week has a bad upset stomach and the usual leg and arm pain....

The other piece of news is that Starlight will be using Francesca's photo in their newsletter - she is also on their homepage - take a look.

Anyway, here are the long awaited photo's showing Christmas, cousins, friends and top hats! Enjoy.

Christmas and Into 2009

Two days before Christmas the hospital called to let us know that another infection had reared it's ugly head. Fortunately Francesca was feeling well so we only needed to have daily antibiotics at home - much to our relief!


Christmas was Fantastic - lots of fun was had by the children and despite Fran's continued antibiotics we had an amazing day, lots of food, wine and gifts! Santa was generous to all!


Fran has now had another ten days of the iv antibiotics but it hasn't cleared her line - they are now locking the antibiotic into her line and we are really hopeful that it will do the trick. Fran has been generally well in herself but today is feeling very "wobbly" and has suffered with her usual aches and pains - possibly due to the infection. If the infection isn't clear in the next ten days then GOS would want to remove it :-( .


We have had some good news though. Last Monday Francesca had her long awaited MRI scan up at GOS and, as we understand it nothing sinister was found which is good news. We are going up to Great Ormond Street on Wednesday for Fran's chemo and will chat to Nick then about further management of her leg pain and the start of the dreaded steroids!!!!

Home for Christmas

It has been amazing - we managed to break Fran out of hospital on Tuesday night ensuring we had a really special family Christmas! Francesca it seemed had had a line infection so, instead of the three iv antibiotics she was on we were able to reduce it to just one - that could be given at home by the community team - hurrah! So, with the information at hand I swiftly broke her out (along with Stuart) and bought them home to enjoy Christmas together, along with Nana and Grandad.

The children had a great day and have been enjoying the spoils of Santa over the last two days. Fran will have her last antibiotic tomorrow and then we hope we are free of temperatures for a little while. On the 5th January she'll have a MRI to look at her legs - they remain sore and we are looking forward to elliminating anything suspicious.

Photo's to be posted soon.

Christmas is Coming!

It has been an absolute roller coaster of a week! Monday saw Francesca's school nativity play - Fran was a shepherd and a fine looking one at that (as you can see). She was amazing and sung her heart out during the whole play! The whole school worked really hard to make it brilliant! Charlie hadn't been feeling too well on Sunday with a temperature (again) so I took him home just after Fran's part and left Stuart to watch the end. Once we were home Charlie seemed fine but I wasn't! This silly flu/cold virus had hit which quickly developed into a full blown chest infection. Poor Stu, I don't think he has ever had to look after me like that! For me, all is fine now and the anti-biotics have done a sterling job.

Wednesday bought about Fran's next trip to GOS for a lumbar and to see Nick. I clearly couldn't go so Stuart and Fran poodled off early in the morning. Everything went well and I think they are still happy with Fran's progress. Once they got home Fran started to spike a temperature and by tea time we took her into our local hospital where we have since been. A sense of deja vu has been looming. It seems most likely that Fran has another virus, she is currently on three different iv antibiotics which, do seem to have picked her up a bit. Yesterday she came home for the afternoon as she hadn't had a temperature for 24 hours and we were hoping that today she would be discharged. Unfortunately, by 6 last night she had suddenly spiked another temperature of 39..... It is disheartening as we really don't want a repeat of last Christmas.

Once again though, for her part Fran is amazing, jolly and looking forward to the visit of Father Christmas. Likewise, Charlie is excited about the prospect of a big stocking from Santa!

Here are some long overdue pictures of Fran and Charlie with their cousins in November, having fun in the woods and Fran at her Christmas play.

We will keep you updated but in the meantime ..... Merry Christmas to you all

Fran back home and school

Francesca was able to come home from the hospital on Friday - it seems that it was a virus that needed to work through her system. Her neutrophils have remained low so today was the first day that I felt confident to send her back to school. We were keen to get her back as the children are learning their song for the Christmas Show and, as you can imagine, she absolutely loves it!

As is usual for our wonderful trooper she has coped really well. She has been in really good spirits and despite experiencing pain in her legs over the past few nights she is happy in herself.

The countdown to the end of treatment continues as it is now only 5 months! We can't wait!

Chemo and a virus....

Last week Francesca had her monthly dose of vincristine which, on the whole she seemed to cope well with. She was at school the following day and seemed fine - as she was due her MRI this week it was decided that she wouldn't have her steroids and I am sure that is what made all the difference! It was just as well she was OK as Charlie had a horrible temperature all week and was really poorly. As you can imagine, we wondered if Francesca would in fact catch the cold/virus?!!...............

She did! Over the weekend her temperature was a little higher than usual and then on Monday she began to spike and off we trotted (for the first time in a long time) to Lewisham Hospital to begin IV antibiotics. They have been taking cultures to see if she has a line infection and she had a chest x-ray which showed a few bits and bobs which could be current or possibly from her last chest infection. Currently she is on 4 different antibiotics and just today is receiving a blood transfusion - we can't almost remember the last time she had one of those either!

Fran in herself is on fine form - tired but happy. We are hoping that she will be home tomorrow if she doesn't have any more temperatures and I am looking forward to going to the hospital later today and finding a very rosy looking Fran post transfusion!

We will keep you updated.

A much needed update

The last month has been really busy as we seem to have settled down into some relative normality (it's only taken 20 months!!). Francesca has managed to spend much more time at school and Charlie is really enjoying nursery. Stu has been busy at work and I have taken on a role within Fran's pta.

A couple of weeks ago we had another dose of chemo and steroids. The good news was that the steroids, whilst not great, did not have such an intense effect on Fran as the previous month. We are due them again in about ten days time but, as Francesca needs an MRI scan they have decided to hold off on the steroids.

This past week we were up at GOS where we saw Fran's consultant Nick. It is always such a positive time as we are encouraged about Francesca's progress. The next big thing for her is on the 25th of November when she will have an MRI scan. This is to check her knees and hips as these are areas that she has suffered with much pain since the inception of treatment. She frequently feels pain behind her kneecaps and more recently her hips get sore. It is most unlikely that anything is amiss but, it is important to make sure that her bones are not been affected by the chemo. Nick seems to think that it is fine and so we are encouraged by that.

So, there are only six months of treatment left and the prognosis remains brilliant. Assured of this, Stuart is already planning the post treatment party!

As you can see from the picture Fran is looking great! We are off to Bristol to celebrate my mum's 60th this weekend - many more pictures will follow I promise!

A Big thank you needs to go out to our very good friend Sam, who has just completed the Great South Run in a brilliant 1hour 41mins and raised over £500 for Children with Leukaemia. Astounding given that Sam has three children (Tegan is Fran's best and oldest friend) and her baby is just 6 months old.

THANK YOU SAM!

Dreaded steroids and a trip to GOS

About 10 days ago it was time to embrace the dreaded steroids and chemo. The experience for Francesca was, this time, far from pleasant (much worse than usual). She really felt the side effects full on and suffered with chronic stomach cramps and everything that goes with that. Stuart and I were sitting up with her in the middle of the night as she tried to get through it. Her mood swings weren't so chronic - we think she simply didn't have the energy. After speaking to the symptom care team at GOS it looks as though they may in fact change the steroid that she is taking which should mean these side effects are at the very least lessened and at the best gone. Along with the bad tummy she continued to have some aches and pains in her legs and hips. We are awaiting an MRI just to check that her bones are all ok - once it is confirmed that everything is as it should be we will be referred to a chronic pain clinic at GOS to try and make the next few months a bit more comfortable for her.

The good news is that despite the above she has only missed 3 days of school so far this academic year - hurrah! We are so pleased. Francesca is loving being at school and goes to one after school club - Dance (surprise surprise!) Although she missed over half of her schooling last year she is doing really well and working hard at her reading and writing. In fact we had a card sent from one of the teachers at school sent home today that told us how well Fran is doing and how hard she is working. It is so great to know that she is happy in her class and loving school.

Charlie started 'Monster School' (Busy as Bees really - but he likes Monster school) and is settling in well despite a rocky start. He goes two mornings a week and it is doing him the world of good. He chats away like a good one although it does mean that he now has the vocabulary to tell me exactly what has been going on with his big sister and what she's been up to!

This Wednesday just gone we were up at Great Ormond Street for Fran's lumbar which went really well. It is incredible to see how much Fran has become used to her treatment (a place that I never expected to find her in). She was really looking forward to the GA as she likes the 'shivery feeling' she gets when going off to sleep. It is also fantastic because rather than waking up distressed from the general the only things she needs is her family and food (not necessarily in that order!)

We are 2/3 rds of the way through treatment - Wow - what a road to travel with just a little bit left. We are so proud of how Fran is handling the whole thing. The other day she asked me when the leukaemia would be gone and it was good to be able to reassure her that it would all be over in Spring next year.

Photo's will be posted over the weekend!

Bridesmaid again and a catch up!

Big sorry from me that it has taken me so long to update the blog. We have been really busy recently what with Fran's birthday, preparations for the return to school along with preparations for the second big wedding of the year!

To backtrack a few weeks, Francesca had her first bout of steroids just nearly three weeks ago - the first for about 5 months and, as we expected, they knocked her sideways. Once again we found that she struggled to sleep, was constantly hungry and had mood swings that went from ever so slightly manic/excitable to really low and sobbing for no apparent reason except she felt sad. It was a tough week and, as usual took her another week to really return to normal. It is great that she is well enough to take the steroids but awful that she has to endure such a tough couple of weeks. I have said it before and am sure I will say it again but they really are one of the most awful drugs.

Over her official birthday weekend we had family to stay which was lovely. The children had a great time whilst my brother and Stu grafted in the garden. Fran was very spoilt and had a fantastic time with her cousins.

The week of the steroids we were lucky enough to be invited along to Starlights family day at Popham airfield. It was fantastic. Francesca and I experienced a thrilling helicopter ride over the countryside. Charlie and Fran went on the ponies twice, took a drive in a Rolls Royce, had their faces painted and, my personal highlight, was the ride on the back of a Harley with Fran (it went so fast I lost my cap!). There were lots of other things to do there and the children enjoyed the best day out. We are still so grateful to Starlight for all they do - it really makes a massive difference to the children's lives.

The past week has been a really exciting one though. Last Thursday Fran went into year 1! Goodness! She has really enjoyed her return to school and is lucky in that for the first term she is in a class of just 15 children. We are so glad as she missed so much school last year we feel she'll really benefit. After Christmas the class will be bigger but for the moment it is really great. When I was chatting to her about school last night she was really animated although voiced that she doesn't enjoy 'later' in the day so much as she gets tired - understandable given that she hasn't been to school for 10 weeks!


On Saturday Francesca was bridesmaid for the second time this year and had an absolutely lovely time. You may recall that Fran proposed to Anne on James' behalf last year (on the blog) so it was a really wonderful that she was well enough to follow her Auntie Anne down the aisle at Dulwich College. Lots of fun ensued with Fran, Charlie and another little girl Amy hogging the limelight with the video cameraman! As you can see Anne and Fran looked absolutely beautiful and really enjoyed the day. Stuart and I also enjoyed it as my mum picked up the kids in the evening so that we could enjoy the much anticipated party! I will post more photo's of the day as I get them.

Starlight and a wonderful 5th Birthday Party

A week ago last Thursday we had Fran's Starlight wish party..... Her playhouse was all finished and the garden decorated with balloons. Starlight also organised for beanbag chairs and a rug to go into the playhouse along with an amazing face painter who decorated the children beautifully. As you can see the afternoon was a real success.

The whole afternoon was brilliant. The most extravagant cake (for a five year old) was made by a lovely lady called Jane who, made a playhouse cake that matched Fran's perfectly. Jane is the mum of Fran's favourite doctor at Lewisham (Mel) and drove all the way from Stratford-Upon-Avon to deliver it. Stuart and I were overwhelmed - Fran and Charlie wanted to eat the bunny rabbits!

Jody and Susie from Starlight came along dressed in their tutu's and wings to make the afternoon extra special. They had organised for a photographer from the local press to take pictures and these then went into the Mercury paper here in Lewisham - they did a great job and we are very very grateful.

Francesca had a fantastic party and has been really well recently so was able to enjoy it to the max. This weekend just gone was Fran's actual birthday and was spent with family in the garden..... She's had a great time of it. It is such a nice place to be when she is feeling so much better and knowing that in just 9 short months treatment will be ending.

This week holds chemo and the start of the dreaded steroids (we have missed them over the last 4/5 months due to illness). Whilst great that she is well enough to have them, we anticipate a tough few days! Oh well, there's always the playhouse - for me though!!

I hope you get a sense of the fun had from these pictures.