It's been a while...

I have to apologise sincerely for my lack of posts recently. A long time has passed and a lot has happened and I will do my best to put it all down in words for you all to see and read.

As I type, we have a 6 year old enjoying a day out at the seaside before she goes into hospital for her last course of chemo for this treatment. It has been a long year for our Joni but, the end is in sight! Since February, the poor dot has been through a lot and I will try to update on everything.


Thank you for taking the time to come and read, and please be patient as I try to remember everything!

Holly x

Run for Joni

A team of mums and dads from Joni-Mai's school have signed up for the Brentwood half marathon on Sunday 25th March. We have decided that we would like the team to run and raise funds for CLIC Sargent because without their help through this, we'd probably be in a terrible, terrible place. Through CLIC Sargent, we have a social worker who comes to see us through our week while we're in hospital but is always available for a chat on the phone. They are an awesome charity and provide things for families that go above and beyond the call of duty.

I'd love if you'd go along and have a look at the team's Just Giving page. Every penny goes to CLIC Sargent, they are an awesome charity and deserve every penny.

MARATHON TEAM'S JUST GIVING PAGE!

And we'd like to say a HUGE thank you to each and every runner on the team, we're so very grateful to you all!!

Katy's Skydive

We are very fortunate to have an awesome friend who has known Joni-Mai from the day she was born, who we love as much as she loves Joni-Mai, that is going to throw herself out of a plane for our Joni-Mai!

Please, go along to her website and have a look, sadly we will be unable to be there on the day as it's Daisy's 2nd birthday and too soon after Joni-Mai's surgery but we wish her every little bit of luck and say a HUGE!!!!!

THANK YOU!!!

Katy's Skydive

Post surgery chemotherapy

This is probably a good opportunity to explain a little about the post surgery chemotherapy.

After the surgery, Joni-Mai will still continue on a 3 weekly chemotherapy regime. Where before, she was having the combination VIDE (Vincristine, Ifosfamide, Doxorubicin & Etoposide) after she will have a new combination - VAI (Vincristine, Actinomycin & Ifosfamide). This will mean a shorter stay in hospital each time we are there. The side effects will also be slightly different but we will deal with these when we get there!

The first chemotherapy week after surgery is scheduled for the 5th March and then will be every 3 weeks from here!

VIDE 6

VIDE 6 is the last round in her current course of chemo and it all went to plan!

We started the week with an ECHO and an appointment with a cardiologist at Great Ormond Street hospital. The ECHO technician took all the relevant measurements and the cardiologist confirmed that Joni-Mai's fractional shortening measurement had improved. The measurement had increased from 31% to 33% and they were happy to go ahead with the Doxorubicin in the last treatment (Doxorubicin is the chemotherapy drug that caused the heart function to drop). Joni-Mai tolerated her medicine REALLY well this time, she had no sickness and although getting fed up and being tired, it was an almost bump free week. We also had a meeting with the specialist sarcoma nurse who delivered the news that Joni-Mai would be able to have a non-invasive grower fitted in her hip replacement - this means to lengthen it as she grows, it is a simple procedure carried out under an electromagnetic field instead of a mini operation. To say we were pleased was an understatement! We were also given some prints of imaging scans that she's had. I will post pictures of these later.

So, with this course of VIDE over, we now have to look forward to the end of the month, the date of Joni-Mai's surgery has changed from the 20th February to the 22nd of February. This will be the peak of the huge mountain we have to climb and as we near it, nerves are fraught and stress levels are heightened but it is vital for her. It wasn;t until yesterday that I realised that this was, in fact, a life saving operation. The magnitude of this problem has also hit me full force and coming to terms with it all over again - though this time completely aware of the problem and not feeling like I'm in a bubble.

Joni-Mai will spend 2 weeks in the RNOH in Stanmore. She will celebrate her baby sister's 2nd birthday in hospital encased in plaster but with a shiny new metal bone - which she is thrilled about! We will have lots of time and space for visitors, so if anyone that knows her, would like to come and visit - you're more than welcome! (Just give us the heads up!!)

Joni's Journey

Our baby and her journey so far

Surgery!

So, as promised, here I am with details of Joni's surgery. You might recall that we were shocked recently with the news that Joni-Mai would be needing a hip replacement. Last Thursday, we had the chance to sit down and discuss with Chris Henry - a specialist sarcoma nurse - the surgery, procedures and implications on Joni-Mai's life.

I will put everything I think relevant to the readers and friends and family in a bullet point list. It makes it easier for me and for you to understand. I will also include some of the questions we asked, so you know exactly what was said.

• How long is the operation?

The operation itself will only take an hour and a half (estimated) but she will be in theatre for about 4 hours. This includes opening Joni-Mai up and stitching her back together after the operation.

• How long is recovery?

Joni-Mai will have to spend 6 weeks in either a hip brace or a hip spica to help set her new hip. It is believed - due to her age and size - that she will need to have a hip spica. Recovery after removal of hip spica depends on Joni-Mai. If she is willing to participate in physiotherapy sessions, she will recover quickly. If she isn't so willing, it will take longer for her to get better with movement and maneuvering with her new hip.

• How will replacing the ball part of the joint affect the socket part of the joint?

In the immediate future, there will be very little - if any - noticeable difference on the wear on the socket. Because she is so young and her bones are still growing and developing, there is nothing that they can do to protect the socket without damaging it further. In time, when she is older, she may be able to have surgery to place something in the socket to protect it. At the moment, the only thing that could happen would be for the ball part to pop out of place - which would cause some discomfort - but in time, there are things that could be done to minimise this happening. For now, Joni-Mai has to get used to using her new hip as naturally as possible.

• How will the new hip affect maneuvering things like stairs?

To begin with, she may be wary of things like stairs but, with practise, she will manage them just fine. She is determined enough to get on so she will be just fine. Physio will teach her how to use stairs in a way that she finds comfortable and as time progresses, she will do them as she always has done. She may walk with a slight limp but this is unavoidable.

• What kind of growth mechanism will Joni-Mai have in her prosthetic bone?

Because of the size of the bone in Joni-Mai's leg, it is likely that she will have an invasive growth mechanism - whereby, to lengthen the bone as she grows, she will need to go into surgery and have it lengthened by an alan key mechanism - as opposed to a non invasive growth mechanism. Joni-Mai can, in time, have her hip replacement replaced with a non invasive mechanism, this will mean taking away everything that is in there already and replacing the whole lot. This is possible and will mean more intense surgery but in the long term it will probably be more beneficial for her to do this.

• Will repeated surgery cause damage to the remaining bone?

In the short term, no. In the long term, possibly. But as we age, science and technology progress so we might be able to do something before anything occurs.

So, as you can see, we have a long term issue but, it is better than any other alternative. Joni-Mai will only get about 5CM of growth from the new bone they are putting in, so we expect to be back in to replace the head in about 18 months time. This means more surgery but we will deal with this when it occurs. In the long term, Joni-Mai isn't allowed to play on bouncy castles or trampolines. This is indefinitely. Joni-Mai will also not be allowed to play contact or high impact sports. We are to discourage any ideas of ice skating and if she wants to take up horse riding as she gets older, we will have to go into discussion about it.

In short, she's going to have a restricted childhood - in my mind - but it is in her best interest. I'm sure there are things I have missed and if there's anything you want to know, please leave a comment and I will get back to you!

Mummy Stevens x

VIDE 5

Monday 9th January - Friday 13th January

So this week saw course 5 of 6 pre-surgery chemotherapy. It was our hardest yet because of all of the different things that hit us, new bumps in our road.

As part of Joni-Mai's treatment, she needs to be monitored for changes in her body. This includes checking her heart and other organs in her body to see that they are functioning properly. We already noticed that there were possible issues with her hearing - which, after being checked seemed nothing for us to worry about. Joni-Mai also seems to have had some hair regrowth which is easily explained - the chemotherapy drugs affect ONLY the cells that are working at the time of being administered. Thus, if her hair is growing at the time of receiving chemotherapy, her hair will fall out again. If her hair is not growing at the time of treatment, it will not be affected and therefor can grow the week after chemotherapy.
The main thing they need to keep an eye on, is the heart. Joni-Mai, before VIDE1, VIDE4, VIDE5 & VIDE6 has to have ECHO scans on her heart to make sure that the medicines aren't having a detrimental effect on it. If there are signs of problems then they can act and prevent extra problems occurring.

After spending the morning in the clinic, we had an appointment at Great Ormond Street Hospital for an ECHO, there was a long wait and after seeing the technician and waiting for the report, we headed back to UCLH. To us all seemed fine but, before the dinner time, one of the doctors had pulled us to one side and explained that there was a problem arising with Joni-Mai's heart. The problem was to do with the left ventrical (Fractional Shortening) its numbers weren't as high as they ought to be. Before VIDE1, her FS was at 46% - absolutely perfect and very strong. Before VIDE4, her FS was at 38% which is a perfectly acceptable decline in three rounds of chemo. The problem was that VIDE4 knocked the figure down to 31%, this was the worrying thing. One course of chemotherapy knocked her heart quite badly and the fear was that if they give another dose of one of her chemotherapy medicines, it might push her heart so far down that she'd need medication to bring it back, it would also mean that there was a chance of there being problems when she was an adult. The cut off figure for medical attention is 29-30% so you can imagine our anxiety at being told this news. The doctor said that a consultant cardiologist would be assessing the images from earlier in the day and they'd make a decision regarding the medicines between them.

After a good night's sleep, the doctors had all been in contact and confirmed that the FS was indeed down at 31%, the three options were -
1) To administer the full dose of Doxorubicin (the drug causing the problem).
2) To administer a modified dose of Doxorubicin.
3) To cut the Doxorubicin completely and review after her pre VIDE6 ECHO.

They finally decided to cut it completely this time and review it before VIDE6, this would give her heart extra time to recover and then if needed, she would be referred to the consultant cardiologist to assess the damage and take steps to fix. So, for now it is a case of hoping and crossing our fingers. We want her heart to fix itself because on top of everything else, a heart problem would be rubbish!

So we began the chemotherapy on Tuesday, Joni-Mai had all of her anti-sickness medicines (a cocktail of Ondansetron, Dexamethasone, Domperidone and Nozinan) and started her pre-chemo hydration. She spent the afternoon going to school and playing in the playroom and she had her regular visitor - Uncle Eddie (she ADORES her uncle Eddie). We had some cake in the day and Joni-Mai had a few jelly babies with her Uncle Eddie - nothing too out of the ordinary for her. In the evening she started to develop a strange rash. It appeared and disappeared before our eyes, and kept doing so for the next thirty minutes, or so. I told the nurses that there was a strange rash and after watching her they decided it was an allergic reaction to something! I held my head in my hands and watched the rash come and go. She'd had nothing out of the ordinary and there was no other explanation for the rash. After some quick thinking, one of the nurses thought to check Joni-Mai's blood sugar levels. Her level was all the way up at 11.4 - FAR TOO HIGH!! So, they cut her drip off and changed her drip bags from glucose solution to saline solution with the medicine added. I can only begin to tell you the stress I was feeling at this point. After doing some reading, I learnt that the combination of the Dexamethasone and chemotherapy plus all the glucose that's pumped through her little body can indeed cause diabetes! "OH CRUMBS!!!" I found myself saying A LOT!!!!! The nurses cut the Dexamethasone from her medicine cocktail and it seemed to work in lowering her blood sugar levels.

The rest of the week went smoothly, until Thursday when her blood pressure was too low. This could have been because she wasn't eating and drinking enough, it may have been caused by the Nozinan - it makes her all droopy. By the Friday, she was fine again! So, a very eventful week.

Please accept my apologies if this post is all over the place, I had a lot to try and remember! We also had a meeting about the surgery. I will put a new post about that tomorrow.

An afternoon of school!

So, Joni-Mai has spent the last 3 afternoons going to school! Today she took sweets in for her class mates, because it's going to be another 2 and a half weeks before she goes again. A farewell, of sorts. She loves going to school, she enjoys seeing her friends and learning new things so it's sad when she's been and has to say goodbye again!

It's also nice to see familiar faces, so many of the mums and dads have gotten to know us now. It's nice to say "THANK YOU" to all the people that go out of their way to say kind words and do nice things for us.

Joni-Mai is getting ready to go to the pantomime now, so I must go and supervise what she's changing into. Otherwise it'll be A princess costume with Tshirt over the top and crocs... hmmmm!!!!

Can YOU help??

!!!WE NEED YOU!!!

A fundraising event is being held on Friday 20th January FOR THE LOVE OF JONI and WE NEED YOU!!! Can you donate anything for a raffle prize? Or even for an auction prize?? Could you provide a service to help out?? If you feel you can, please get in touch with me! You can find me on twitter @HollyJadeBear, on FaceBook or you can email me: Email HollyJadeBear


If you don't think you can help but would like to make a donation or attend the event please go to WWW.JONI-MAI.CO.UK

Joni lost a tooth!

So, I'm a bit delayed but on the 28th Joni-Mai lost her first tooth! We were taking her temperature twice hourly as it was higher than normal. On our last check, we also checked the wobbly tooth (she was awake with her last temperature check) and it was on the verge of falling out! I got brave and asked if she would like me to see if it was ready to come out and without even the slightest pull, it came out!

Joni-Mai got a WHOLE £5 for her first tooth!!! Lucky thing :-)

An AMAZING gift

Joni-Mai received an amazing gift from her Aunty Stacy... A soft toy signed by none other than the AWESOME Simon Cowell! Joni-Mai LOVES Stacy and Simon so much so it was a wonderful surprise for her when she opened the box with her gifts.

Thank you, Aunty Stacy and Simon. You made a poorly baby VERY happy xxx

Just had an operation, so excuse the frown!

Fund Raising!

I have 2 wonderful friends who are both fund raising for Joni-Mai and her hospitals.

Katy is throwing herself out of a plane, for more info please click HERE!!


Lauren is holding a sponsored pyjama day, you can take part if you'd like to help out. Please let me know if you're taking part, too and I can keep a list of names etc. You can find the sponsor form HERE!!

Joni-Mai's surgery

On Monday 19th December we were given more information on Joni-Mai's surgery. Part of her treatment is the removal of her tumour and because it is within her bone, she will need the bone taken away and replaced with a prosthetic. Initially we believed that a part of the shaft was what was to be removed but after our clinic appointment, we were told that she would need more than a part of the shaft replacing.

In the last week of February, Joni-Mai will be going to the RNOH in Stanmore. Unfortunately for her, she will have to have a hip replacement. From half way up from the knee to the joint, the bone will have to be removed and replaced with a metal prosthetic bone. This will mean that her hip will need replacing in about 5-6 years time, again in her teens and once more in her early 20's due to growth and then beyond this, we expect replacements every 9-11 years. Hopefully in this time, technology and science will progress enough so that hip replacements will last for longer than the 9-11 years that they do, now. This was a blow for us, as we expected she would be finished her treatment in a year and it will be complete after this. We had no idea that once she'd had her surgery, we'd have to endure more.

While we are happy that she's on the road to recovery, it is awfully hard knowing that this has impacted on the rest of her life and would mean that she could have difficulties for the rest of her life. So for now, we are seeing Joni-Mai through her chemotherapy and putting the surgery to the back of our minds.

I for one, am finding it difficult to come to terms with but I know, she's in the best possible hands and a hip replacement is better than the alternative...

VIDE 4

MONDAY 19th DECEMBER:

This week saw the completion of VIDE 4. After discussing the anti-sickness program and what was working, it was decided to put the next level into play. The introduction of a drug called Nozinan finally stopped the sickness. Although it makes Joni-Mai VERY sleepy and turns her into a zombie, it stops her from feeling sick which in turn, stops the vomiting! This made the week a little easier for us, particularly after the news of her surgery (I will elaborate in the next post!). In all, this week was rather uneventful - aside from leaving parties for two girls who have finished their treatment. Addie had finished her treatment for Spindle Cell and Sasha was saying goodbye after finishing treatment for a tumour on her rib and who had had spinal surgery. Joni-Mai was allowed home on the 23rd of December and was able to celebrate Christmas with the rest of us! It was a very quiet one but it was enjoyable. More so, because Joni-Mai was at home and not in hospital.

Walking in a "Winter Wonderland"

SATURDAY 17th DECEMBER:

Today, we ventured into London with our friends "The Wizzy's" to spend a day in "Winter Wonderland", we made our way up on the train and had a wonderful time! Joni-Mai and Sophie were very happy to be reunited, Daisy was happy to spend time with her friend Hannah and all the parents were happy to see the children happy! When we arrived, we were greeted by HUGE queues but once inside we had a lovely time. We froze but we were happy.

 

Harvest Time!

THURSDAY 15th DECEMBER:

After a late night and lots of fun and games, Joni-Mai settled down for a good night's sleep. She slept very well and by the time morning came, she was ready to start her harvest. Her machine was called "Ginger" - named after the Spice Girl - and was ready to be hooked up to Joni-Mai. The process requires blood to be taken out of her, it is then put through the harvesting machine, which spins it at such a speed to separate the stem cells from the rest of the blood. As the machine takes blood out, other blood is put back into her like a blood transfusion. The blood that replaces the blood they take out is donated blood, this means she has - essentially - had 2 blood transfusions in one week. It's quite difficult knowing she depends so highly on blood from other people but it is a necessity.

Each harvest takes 4 hours and it takes another hour (after flushing the blood through the machine and her VAS-CATH) to get the results back, we then know whether or not she has to stay in another night for another harvest or if she is able to go home after the removal of the VAS-CATH.

After being un-hooked from "Ginger" Joni-Mai joined a leaving party for one of the young boys who finished his treatment today. Hamza, an 8 year old boy was leaving after finishing treatment for a brain tumour. Thankfully, his tumour was in a place they could remove. So, after a long course of radiotherapy, he was leaving to continue with his life. At the end of Hamza's leaving party, Joni-Mai's harvest results were in and she was able to leave! They had harvested a HUGE 7.2 MILLION stem cells in less than 200ml of blood which was astounding.

After the removal of the VAS-CATH - which was unpleasant, to say the least - we were free to go home and enjoy the last few days before VIDE 4 began!

Party Time!

WEDNESDAY 14th DECEMBER:

Today, Joni-Mai had her VAS-CATH fitted. She went into theatre at midday and was anaesthetised just before 1pm. The mini operation took less than an hour and Joni-Mai was back on the ward not too long after 2pm. When she woke up, in recovery, she was groggy and not very happy that Charlee (her favourite nurse) wasn't there to take her back up to the ward. Once back on the ward, she was eager to eat and drink - she hadn't eaten since 6pm last night - and so we encouraged her to do so. A few biscuits and some juice later and she was ready for a platelet transfusion (platelet information, here). Shortly after the transfusion, she started to feel sick - the nurses thought she may be having an adverse reaction to her platelet transfusion. After some piriton and some codeine, she fell asleep for a while.

When she woke from her sleep she had a visitor (Uncle Eddie) and had a party to get ready for!

Joni-Mai spent the evening - only 2 hours after returning from theatre - partying the night away. She danced, sang, ate and mingled with the stars! She had an awesome evening and shocked so many people because she had a VAS-CATH in her groin - which can be very uncomfortable - and was dancing and bouncing about like there was nothing wrong with her! She even met Dick & Dom!!

ECHO ECHo ECho Echo echo...

TUESDAY 13th DECEMBER:

Today Joni-Mai had an appointment for an ECHO at Great Ormond Street Hospital. This was to check that her heart was still functioning properly after her first 3 courses of chemotherapy. Chemotherapy medicines can have a negative effect on the major organs in the body and so, they need monitoring on a regular basis to ensure this is not happening. If there were problems, the chemotherapy regime would have to be altered to stop any negative effects progressing.

Thankfully, Joni-Mai's heart is still very strong and she will continue on the same strength drugs.

After leaving GOS, we made our way to UCLH to settle down in preparation for Joni-Mai's vas-cath fitting in the morning. A VAS-CATH is a Venous Access Catheter - similar to her PICC line, it allows access to her veins so that they can take blood out and also return it at the same time (by means of blood transfusion).

Tonight, Joni-Mai has spent most of her time playing nurses and taking people's blood pressure and temperature. She has decided that she wants to be a nurse when she's older and I don't blame her. She's looked after by the best nurses I have ever met and they are brilliant role models!

A very "FUN" run

SUNDAY 11th DECEMBER:

Today was the Fun Run - For the Love of Joni - over at the Harrow Lodge park boating lake. It was cold and damp but we were ready to run 5k for Joni-Mai. We all wore Santa hats and Joni-Mai T-shirts, Joni-Mai's daddy wore a back carrier and carried Joni-Mai the whole way round. It was hard work, given that we'd had NO training and are not runners but we did it.

There was a good turn out and someone from the local paper came out to take some pictures. We even had a runner who had travelled all the way from Wales!

THANK YOU TO EVERYONE that ran and helped out and to those who came to cheer us on! We don't have a grand total for money raised, as yet, but as soon as I know, I will update you all!!

Transfusion Talk

FRIDAY 9th DECEMBER:

Last night, we were told that Joni-Mai's blood counts were very low and she would need to have a blood transfusion. Joni-Mai copes very well with having to spend time in hospital and also quite enjoys having a transfusion. Her body seems to like the transfusions, too! It is an incredible thing to see, her lips go from being very pale pink (bordering on grey) to a beautiful bright red. Her energy levels shoot up and she turns from being freezing cold to toasty and warm. Although it's sad to think Joni-Mai depends on blood donations from others, it is amazing to see the transformation in her.

The video, below, is Joni-Mai's take on blood transfusions!

Transfusion Talk

SUPER HIGH G-CSF!

SUNDAY 4th DECEMBER:

Today see's the start of a 10 day course of G-CSF, this time the dose is more than double what it is normally because Joni-Mai is due to have a stem cell harvest next week. G-CSF stimulates bone marrow production of stem cells, which once produced, are released into the blood . Once released into the blood, they split and form into other cells, these are mostly important in Joni-Mai's case for helping her blood recover from the chemotherapy. The higher dose is to ensure that there are enough stem cells in her blood to harvest and hopefully they will only have to run one harvest - which lasts 4 hours. The higher dose of G-CSF stings Joni-Mai more than it does normally, but it is a necessary evil. Especially if it helps prevent a stay in hospital with infection!

VIDE 3

WEDNESDAY 30th NOVEMBER:

Today saw the start of the 3rd round of chemotherapy. The anti-sickness program was altered this time, again, because Joni-Mai does not tolerate her chemotherapy too well. It makes her very sick and despite being on a high dose of anti sickness medicines she still gets very poorly. The week went by fairly quickly, with Joni-Mai presenting the ward with gifts that she'd bought for the play room and other children to use at their beds (with money that Gramma had raised by shaving her head!!), there were some Nintendo 3DS consoles, lots of toys from the Disney store and LOADS of activity packs for children to use at night time when the play room was closed and the play specialist had gone home. We also went out while Joni-Mai was in for her medicine and bought some 3D games for the 3DS (with money from Francesca's Boutique!!!).

Joni-Mai tricked us into thinking that her new anti-sickness program was working. It wasn't, though. Two days in and Joni-Mai got VERY sick, this - in turn - made her not want to eat or drink and we had a battle on our hands. By the time Saturday had arrived, and we were due to go home, Joni-Mai was refusing any food and drink and the Doctors at UCLH had decided to transfer her to Queen's to administer more anti-sickness and possibly fit her with an NG tube (Nasogastric tube). Unfortunately there was not a lot left that I could do to persuade her to eat or drink and I was slowly resigning myself to the fact that we were going to spend yet more time in hospital. This was until one of the magical nurses, Shola, whispered something into Joni-Mai's ear and she slowly started to nibble some crisps and gently sipped some milk. This was enough to save us a trip to hospital and an NG tube fitted. Joni-Mai returned home on the 3rd of December, very tired and feeling very poorly.

Joni-Mai and her friend, Elin - another Ewing's patient at only 5 years old, defying the odds!

FRANCESCA'S BOUTIQUE

TUESDAY 29th NOVEMBER:

Joni-Mai drew the winner for the raffle that was held at Francesca's Boutique in Hornchurch, tonight. The prize was a £50 voucher to be used in the boutique and the winner was LIN THOMPSON.

A grand total of £603.13 was raised!

Our biggest thanks go to Jo Henty and her family for raising a mammoth amount!

Joni-Mai with the winning ticket!

A bit of a mess!

MONDAY 28th NOVEMBER:

Today was a long and stressful day! We made our way into London to attend the oncology clinic and start chemotherapy. As we sat in the waiting area for clinic with Joni-Mai's specialist, Maria Michelagnoli, we noticed it was abnormally quiet - we normally bump into a few of our chemo buddies - and after an hours wait for our appointment, we were told that no oncology doctors were in clinic today! After a bit more of a wait, we were seen by a doctor and were told that Joni-Mai would not be starting her chemotherapy until Wednesday because there were no free beds and they simply weren't expecting us (despite us having an appointment...). We returned home - somewhat annoyed and stressed - and decided that we'd enjoy a couple of extra days together.

Long time, no post!

Please accept my apologies for not posting anything on here for a while! There is a lot to catch up with so I will go through and update all of the latest!

Happy Birthday, Daddy!

It was Daddy's birthday on the 25th November and Joni-Mai made a cake with Aunty Sophie. We also went for dinner in Romford.

Happy Birthday, Daddy. We hope you had a lovely day XxX

A very Christmassy a-fayre

Today, we went to the Christmas fayre at Joni-Mai's school - Scotts Primary School, Hornchurch. It was a lovely afternoon and she got to see lots of her friends, all of whom have been truly missed!

We ate cupcakes made by the beautiful Tracy, had cuddles with Father Christmas and had face painting and tattoos by the wonderful FoSA mums. Joni-Mai REALLY enjoyed herself!

To finish my entry for today, I would like to say a HUGE thank you to everyone that came today and raised funds for the school and Joni-Mai (FoSA and Mr Abelado have decided to donate 20% of funds raised to Joni-Mai's cause)! Scotts is a brilliant school, we are very lucky to be a part of a wonderful community. Everyone cares and we have had so many lovely offers. If I could thank you individually, I would. Thank you, you are all helping us through this hard time.

A CALL FOR HELP!!

As you may or may not know, there are lots of people rallying around to raise funds for Joni-Mai and the hospitals in which she is treated.

A very beautiful lady, Lauren Browne has decided to run the Barcelona Marathon for Joni-Mai. If you would like to support Lauren, please click HERE!

Our very good friend, Katy Lille has vowed to throw herself out of a plane for Joni-Mai. If you would like more info, please click HERE!

A lovely, yummy mummy friend of ours is holding a raffle for a £50 voucher for her boutique "FRANCESCA'S BOUTIQUE" in Hornchurch. If you would like some tickets please get in touch via HERE!

Our good friend, Tracy - who makes extra super yummy cakes -will be running a Prize Draw to win a Christmas Cupcake Class from now and until her final Event in December. It will be £1 to enter and all monies raised will be donated to Joni-Mai's fund. If you can't make it to an event and would like to enter, please contact her on t-cakes@hotmail.co.uk


A fun run is being organised at the boating lake in Harrow Lodge Park, Hornchurch on the 11th of December, if you would like to take part, please click HERE!

WE NEED PEOPLE TO HELP!!!

we need stewards (high vis vests provided) we need bottles of water and we need people to hand out flyers and go into shops to ask to pop up posters, and we need people to Run/Walk 5 or 6k...

 

IF YOU CAN HELP, PLEASE CONTACT ME or go to WWW.JONI-MAI.CO.UK

Thank you, all!!

NEW WHEELS!!

THURSDAY 24th NOVEMBER:

Today, we went to pick up Joni-Mai's new wheels!! Because she can't walk too far and because she gets tired, Whizz Kids have arranged for her to have a super snazzy wheelchair. She LOVES it, particularly spinning around in it - she certainly IS a Whizz Kid in her new set of wheels :-)

Thank you to Andrea Goldsborough for cheering Joni-Mai up today! Whilst waiting for the wheelchair, we bumped into one of Joni-Mai's friends mummys, who has invited Joni-Mai round to their house for tea, one evening. She's a very excited little monkey and looks forward to her evening of fun with Millie. Thank you!

MRI

WEDNESDAY 23rd NOVEMBER:

A trip to UCLH for Joni-Mai today for an MRI scan. She was very excited to see Emma - the play specialist and she was also excited to see if any of her friends would be there, too. Fortunately, some of her friends WERE there and she was pleased to find out that they'd be there again next week when we go in for VIDE 3 - her 3rd course of the VIDE combination of chemotherapy drugs. (Vincristine, Ifosfamide, Doxorubicin, Etoposide) VIDE is also complimented by Mesna.

We are pleased that she is looking forward to going back in to hospital next week. Although she gets terribly poorly she still remains so positive. Joni-Mai is inspirational in ways I cannot describe!

Blood counts and Christmas wreath's!

TUESDAY 22nd NOVEMBER:

And so, another day in Queen's hospital! Today, we went in so Joni-Mai could have her final G-CSF for this course of chemotherapy and so she could have blood counts taken - to see if she would need another blood transfusion as her Hb count was dropping again after her first transfusion.

Joni-Mai spent a lot of time waiting around until, Jan - the teacher - came by and gave her something to do...

A Christmas wreath made entirely of bits of material! It will live in Jan's school corridoor until after Christmas, whe Joni-Mai will get to bring it home.


After having spent 5 hours waiting around, Joni-Mai was given the thumbs up to go home. She didn't need a blood transfusion and she was well enough to go out!! She didn't need to stay indoors any more, so we went to Lakeside for some much needed retail therapy... And an ice-cream.

And yet MORE hospital!

MONDAY 21st NOVEMBER:

A morning in Queen's hospital was enjoyed by all, Joni-Mai had to return for her 9th G-CSF. Her specialist nurse, Carolyn administered the jab via her insuflon. Carolyn is very caring and made sure she gave the hormone how Joni-Mai liked it - slowly and gently. We spent another day back at home, watching films on TV!

She's coming home!!!

SUNDAY 20th NOVEMBER:

Joni-Mai's blood cultures returned negative - this is to say, no bacteria grew from the blood that was taken from her PICC line which also meant her PICC line wasn't infected! She was still hugely neutropenic, she had no platelets or white blood cells and her haemoglobin (red blood cells) were decreasing but, she was carrying no infection and so she was allowed home. She was to stay indoors until her blood counts had returned to a suitable level, but we were happy to get her home so she wasn't confined to one room.

She was happy to come home and saw her cousin Leah when she got back. We spent the afternoon with Nanny, Grandad Bill and Uncle Matt and spent the evening with Gramma, Grandad, Uncle Sam and Aunty Sophie.

And yet MORE time in hospital...

SATURDAY 19th NOVEMBER:

After days of being stuck in room on her own, Joni-Mai was fed up - and rightly so. Daddy was fed up because things weren't being done as they should have been, the medical staff (MINUS A FEW EXCEPTIONS!!!) on Tropical Lagoon were not following protocol and kept fobbing us off with poor excuses for not doing things as they should have been done. Joni-Mai needed her dressing changed on Tuesday and it still hadn't been done on Saturday - leaving her vulnerable to infection developing on her PICC line (which goes straight to her heart...). Daddy got hard and told them it HAD to be done, and thankfully, someone changed the dressing. It was annoying but it isn't a CLIC unit and so, they aren't used to the discipline that is needed while dealing with an oncology patient. There were a few exceptions to the rule, a kind student nurse - Simon - was very good with Joni-Mai, taking obs on cue. A really nice oriental male nurse who was very gentle with Joni-Mai and gave her the G-CSF slower than anyone and in more of a friendly manner than anyone else ever had. Joni-Mai spent a lot of time with the teacher Jan and Viv the play specialist. They helped her through what would have been a boring time had they not been there!


Today, we were expecting Joni-Mai to be allowed home, her blood cultures had been with the pathology labs for over 48 hours, more like 54 hours. Daddy kept asking where the results were and no one could answer the question. It wasn't until the late afternoon when someone told him Joni-Mai couldn't leave until she had her blood culture results but that could take some time and mean an extra night in hospital because the Pathology Lab's computers were down.

Joni-Mai ended up staying another night in hospital because of a computer fault.

Transfusion

THURSDAY 17th NOVEMBER:

We spent today, in a side room. Joni-Mai started her blood transfusion quite early in the day and it ran over 4 hours. She coped surprisingly well with being attached to a drip for the 5 hours (4 hours for blood transfusion and an extra hour for a flush to go through the line). She had no reaction and she even told the nurse off because she got a little bit of blood on her bed sheets. Immediately after having the transfusion, she had warmed up (low RBC was the reason for her being cold at Jo Jingles!!) and her cheeks and lips returned to a beautiful rose colour. Her bloods were showing no signs of infection but she was still neutropenic. She was not to leave hospital until her blood cultures had returned from the labs. These would take 48 hours so she was due to stay until Saturday at the earliest.

The afternoon saw Joni-Mai going for an X-Ray on her chest, to see if they could find a cause for her heightened temperature - as they were'nt seeing infection in her blood results. The doctors were slightly mistified because she was so perky and looked so healthy even though she was severely anaemic and she was showing no symptoms of anything like infection but she'd had a high temperature - which is an indicator for infection!

Daddy and Nanny came to see us on their lunch breaks, they both work just down the road in Romford. Joni-Mai enjoyed her guests and spent the afternoon still in her side room, watching films and making Christmas decorations for the ward. We were told that she was to stay in the room as there were lots of children with highly contagious illnesses. Unfortunately, this meant that she was unable to go to the play room or the outside play area and was confined to her small side room with only a TV and a few craft activities to keep her occupied - unfortunately, there is no CLIC unit nearby so each time Joni-Mai ends up in hospital, she will be confined to a room on her own which is sad, but it is necessary if we want to stop her from catching any horrible bugs.

 

Joni-Mai having her blood transfusion!

Back to Hospital...

WEDNESDAY 16th NOVEMBER:

Joni-Mai had a good day, today. She had a visit from the community nurse to give her a dose of her G-CSF - the dreaded jab. G-CSF stimulates the production of white blood cells (WBC). In oncology and hematology, a recombinant form of G-CSF is used with certain cancer patients to accelerate recovery from neutropenia after chemotherapy, allowing higher-intensity treatment regimens.

After the nurse left, we quickly got ready to go into town for Daisy to go to Jo Jingles. Joni-Mai was thoroughly excited to be going to Jo Jingles and seeing her best friend's Mummy, Lynne. When we got there, she was a little subdued as there were lots of people in the hall, her nerves soon wore off and she was singing and dancing with the other children. She kept complaining that she was cold but, it was cold outside and I thought nothing of it. I cuddled her until she was warm again and she continued to play happily again.

Once we got home, Joni-Mai ate us out of house and home. A welcomed chenge to the refusal of food that we'd been enduring for weeks. Three lots of lunch, that's what she'd eaten! After her lunch, I took her temperature and it was slightly higher than it should have been, which set me off monitoring it hourly. Each hour that passed saw her temperature creep up a little higher and by a quarter to 6, her temperature had peaked up to 38 degrees. A no-no while she could possibly be neutropenic. Over the course of the hour, I monitored it further and the only change to be seen was increase, no decrease. This meant ANOTHER HOSPITAL TRIP FOR US!! We dropped Daisy to Gramma and went straight to our local hospital, Queen's (Romford). Once we arrived, we were put in a side room to stop Joni-Mai catching any nasties from any other children on the ward. After assessment, we were told - to EVERYONE'S surprise - that Joni-Mai's RBC (Red Blood Count) was 5.2 and she was needing a blood transfusion ASAP. She was also Neutropenic and had nothing at all in her blood to fight any infection and we were going to have to stay until she was better enough to go home! A side room was found on the inpatients ward "Tropical Lagoon" and a course of antibiotics was started.

Happy days!

SATURDAY 12th & SUNDAY 13th NOVEMBER:

A very uneventful and restful weekend was spent at home with family. Our good friends; Craig and Jane popped in to see Joni-Mai on Sunday with their two lovely girls - Sophie and Brooke. Joni-Mai spent hours playing with her Hama beads and made a princess for Brooke to take home with her. Joni-Mai's big cousin, Lauren popped in to see her too. Joni-Mai was a very tired girl but the sickness had passed so she was able to rest. She even slept until 10am on Sunday morning!! Mummy and Daddy thought all their Christmases had come at once.

Joni-Mai & Brooke's Hama Beads

GOING HOME!!!

FRIDAY 11th NOVEMBER:

Today is the day we go home! After a very restless night, the doctors were worried that Joni-Mai was going to be too dehydrated to go home. She had been so sick in the night that they were going to put her on an extra rehydration drip and extra anti sickness via her PICC line, it would have put her home time back by at least 3 hours and would have meant another night in hospital, in isolation! After arguing with her that drinking would be the best thing to do, she gave in and had a drink of water - VERY RELUCTANTLY!!

Almost an hour later than anticipated, we were allowed to go home. Our tired princess was fed up and ready to return to normailty. Uncle Eddie took us home in his posh Mercedes, Joni-Mai was very happy to spend time with her Uncle Eddie when we got back home. He played with her and Daisy and they had lots of cuddles before a very tired Joni-Mai and Daddy fell asleep in Gramma's living room.

We had a lovely message from someone very special that would like to meet Joni-Mai after reading her story in our local newspaper, hopefully, he will be coming to our house on Sunday to see us :-) We can't wait!!

Isolation!!

THURSDAY 10th NOVEMBER:

This morning, Joni-Mai was moved into isolation. She had a bit of a loose cough which worried the doctors - passing infection onto another cancer patient could be devastating - so they thought it better to be safe, rather than be sorry. She was put in a side room and the door was to be left closed. People coming in had to wear aprons and had to wash hands thoroughly before leaving the room - to stop the spread of infection.

School was a no-no today. Unfortunately, there were musicians coming in to play for the children and run a music workshop for the children but thankfully, the teacher's assisstant had thought of Joni-Mai and arranged for them to come to her room and play some music for her. When they came in, they told her the story of The Grasshopper and The Ants - an Aesop Fable.

The piece of music was called La cigale et la fourmi, you can listen to it on this video:

Joni-Mai really enjoyed the music workshop and was a very happy girl for the rest of the afternoon. She spent another evening being poorly, her medicine is making her very sick and all the anti sickness medicine is not helping her at all. After an evening with Daddy and watching "Johnny English" she went to sleep (in between being sick and running to the toilet...) ready to return home in the morning!

Thank you to Gramma, Nanny & Aunty Linda for coming to see us today and for bringing Daisy to see her big sister, too!

Tom's Birthday Party!

WEDNESDAY 9th NOVEMBER:


Today, Emma - the play specialist - threw a party for one of Joni-Mai's friends, Tom. It is going to be his 11th birthday on Sunday 13th November. Tom and Addie are going home tonight, so today is the best time to have his party. There was lots of party food, the children all got to play on the Nintendo Wii and most exciting of all... FACE PAINTS!!! Everyone got to play with the face paints - the children painted the grown up's and vice versa. Mummy painted Joni-Mai and Joni-Mai painted Daddy. Daddy was a rabbit and Joni-Mai was a clown:

As soon as it got to half past one, Joni-Mai wanted to leave the party and go to the school room (they must be doing something right in there for her to want to leave a party!!!). She stayed for the afternoon and as soon as school had finished, she climbed into bed and slept for the afternoon!

After waking, Joni-Mai wasn't so perky. She spent the evening being sick - one of the side effects of her chemotherapy drugs - watched about 20 minutes of "The Nightmare Before Christmas" and then fell asleep... Again!

Joni-Mai also had some visitors today! Thank you to Uncle Matt, Uncle Neil, Uncle Dave, Aunty Sally and Kerry-Ann for coming to see her :-)

Poorly poppet

TUESDAY 8th NOVEMBER:
So, last night I was informed that Joni-Mai wouldn't be starting her chemotherapy on time due to her file being lost. Computers were saying they were somewhere they were not and everyone was searching frantically for a file that was nowhere to be found.
Today started with yet more searching and profuse apologising, lots of people in different parts of the hospital looking for a file that didn't want to be found. Without the file, they couldn't start the chemotherapy as there were no consent forms, so, after signing a new form and expressing my worries (about her anti sickness drugs more than anything else) they started her medicine, 24 hours later than originally planned! Joni-Mai had a nice easy day, she spent the morning playing with the other children on the ward and the afternoon in the school room. She had some visitors today (thank you Nanny & Katy) and got to spend some time with her baby sister, Daisy.
Our ongoing battle with food and getting her to eat has once again, decided to rear its ugly head. We spent over an hour at lunch time trying to get her to eat and about the same, again, at dinner time. She has even started to refuse Macaroni Cheese, which is somewhat disheartening -particularly as it is about the only thing that she has decided to eat for the last month(ish). So we are welcoming any food ideas to try with her - please send any suggestions my way!!!
After everyone had left and Joni had settled, she began complaining of a tummy ache. The dreaded sickness has returned, despite being on a higher nausea management program. The poor dot was very poorly. It seemed that all the time we spent getting her to eat today was wasted! We had started to watch The Nightmare Before Christmas before she got sick but she went to sleep shortly after taking some anti sickness medication.
She's fast asleep now, I have just watched Sleeping Beauty on my own without so much as a flinch from Joni-Mai - I know she's poorly if she won't watch a film with me!
I have also had news on some fabulous items for the fundraising event, if you would like more info on how to get involved please go to

FOR THE LOVE OF JONI 

Or to purchase raffle tickets for a £50 voucher to spend in Francesca's Boutique in Hornchurch, please visit:  

FRANCESCA'S BOUTIQUE

Thank you all for all the support and for reading about Joni-Mai x

She's famous!

Joni-Mai has made the local paper! Please click HERE for the article.

The piece also mentions a fun run and other fund raising events, for more info on how you can get involved, please visit:
For the love of Joni

Back in hospital!

MONDAY 7th NOVEMBER:

Today we are back in the hospital (UCH) for the second course of chemotherapy. Joni-Mai had a fun weekend to take her thoughts away from going back in to hospital for the week, on Saturday she went to the pictures with Gramma, Laura and Harriet to see TinTin and on Sunday we had some good friends over for tea. Our visitors on Sunday were particularly special - Katie, Anna and Monique - as they are members of a wonderful group of acting, singing, dancing and quite frankly magical storytellers called Tiger Tales. They arrived with a ukelele and lots of songs to sing to the little monkey, we had a wonderful evening and our minds were relaxed and refreshed after singing and listening to Anna sing and play the uke.

After a peaceful sleep, we woke to get ready (which is always a stressful rush in the Stevens household...) for another week in hospital for round 2 of the chemotherapy. We arrived in London with lots of time before our appointment in clinic and so we went for a hot chocolate, Joni-Mai preferred to drink grandad's Lilt and eat biscuits. After our clinic appointment, it was time to make our way to ward T11, the ward upon which Joni-Mai is being treated. She spent the afternoon in the school room and once school had finished, she chilled out on her bed playing games on phones and on her Nintendo DS. While she was chilling out, we heard the voices of excited patients talking about meeting Justin Bieber! On investigation, I found out the he had indeed been on ward T12 (the adolescent ward, a floor above us) and some of the patients had gone from our ward to see him. Unfortunately, Joni-Mai wasn't invited because she wasn't a teenager - the visit had been arranged by the Teenage Cancer Trust - which is actually quite mean (in my own honest opinion). I know it would have made her the happiest girl alive, and it was sad that her friends got to go but she never!

Never mind!!!

We spent the evening playing with her new friends, learnt how to play Uno and ate copious amounts of sweeties.

Oh, and we aren't starting chemo today - they can't find her notes!! D'oh!

Only a couple of hours on...

Daddy, Grandad and Uncle Sam had their hair chopped off so they could be just like Joni

Baldylocks!

FRIDAY 4th NOVEMBER:
Joni-Mai has lost even more hair since last night. Our little Rapunzel is no more!! Probably by the end of the weekend, she will have no more hair.

FRANCESCA'S BOUTIQUE

Our lovely friends over at Francesca's Boutique are holding a raffle in Joni-Mai's honour. The prize will be a £50 voucher for the boutique and tickets will be available from the boutique itself. For more information, please get in touch with myself or the beautiful Jo.

FRANCESCA'S BOUTIQUE

Psssssst... If you go to their Facebook page and like them, they are offering a 10% discount until tomorrow evening. Have a look, they've got some smashing bits'n'bobs as seen on catwalk during Essex Fashion Week. 

If you'd like to get involved in any fund raising, please follow this link : For the Love of Joni

Going bald!

THURSDAY 3rd NOVEMBER:

Today Joni-Mai has lost a lot more of her hair. The chemotherapy is starting to take effect on her hair, and it makes her look even more ill! She took Gramma to get her 'Flu jab - Gramma was a very brave girl and she didn't cry. Joni-Mai also had a visit from Occupational Therapy, who prescribed a bath stool, board and step for her. She'll soon be the proud owner of a new toilet frame, too!

Joni-Mai's new hair!

CAKES!!

We received a lovely gift of personalised cupcakes for Joni-Mai from the wonderful Tracy's T-cakes

Tracy makes some awesome cakes, please do pop over on the link below and have a look at some of her creations - they taste as good as they look!

Tracy's T-Cakes

Back to school!

WEDNESDAY 2nd NOVEMBER:
Today, Joni-Mai returned to school. Before leaving for school, I warned her not to pull her hair out in front of people as it may upset someone. She gave me her word that she wouldn't and we set off for school, when we got there she was greeted by a chorus of excited 5 year old children calling out "JONI-MAI!!". It made me smile knowing that they had missed her and she'd be looked after by her class mates.

At lunch time, she came home for lunch - sporting a few new bald patches. I asked her "Have you been pulling your hair out, Joni?", she looked sheepishly at the floor so I repeated the question. Joni-Mai replied with "Yes, Mummy". I asked her why she had been pulling her hair out "because everyone wanted to see!", who am I to argue with that? She then informed me that she'd let other children in her class pull her hair out too!!! Little monkey, she makes me proud with her strength.

After school we spent some time with Sophie - Joni's best friend - and her family. It was lovely to see the girls play together after almost a month of near constant hospital trips. We left and came home for another dinner of macaroni cheese - we've turned into a family of macaroni lovers since Joni's hospitalisation (by Joni's choice!!) - and a visit from Aunty Sophie. When it got to bed time, Joni-Mai developed another temperature. Not wanting another hospital stay, we stripped her down to her tights and vest and thankfully her temperature came down.

She went to bed looking forward to another day at school.

Can you help?

Lots of people have been asking of there's anything they can do to help. Soon there will be a fundraiser for Joni-Mai and for the ward on which she is being treated. If you would like to get involved, please do so!

There are some very kind people taking part in Movember for Joni-Mai and lots of other people offering services for the raffle on the day amongst other things.

Please, please if you can help in any way (however large or small) it would be greatly appreciated. If you can't then just sharing the page and this blog helps more than you could possibly realise.

Thank you so much for reading and spreading the message.

FOR THE LOVE OF JONI

Please follow the above link for more info on how you can get involved.

Holly x

NO MORE G-CSF... FOR NOW!

TUESDAY 1st NOVEMBER:

Today saw the last of the dreaded G-CSF jabs (for now), Joni-Mai's blood counts have reached a level that the doctors are pleased with and so she can also stop taking her antibiotics. To celebrate, we went shopping and Joni-Mai is now fascinated with The Nightmare Before Christmas after watching a clip in the Disney store.

Joni-Mai has discovered a new party trick, today! She can pull out great big clumps of hair without it hurting her. Her funny quote of the day, today was to Daisy - while presenting her with two hands full of her own hair and laughing - "LOOK!!! Soon I will be a baldy head, Daisy!!!".

Her positivity absolutely astounds me!

A long drive home

MONDAY 31st OCTOBER:

Today, we drove all the way home. With one stop in Truro for a G-CSF and a blood test. We left Cornwall with a sigh of relief and decided not to go on holiday again until Joni-Mai has finished all treatment and is all better. It was a long hard week but it was worth it for the little time we got to spend all together as a family.

Today, we also noticed that Joni-Mai was starting to lose some hair. Every now and then, she'd rub her head and plumes of hair would shower down gracefully. It was hard for us to see and it was decided that she needed to be told. When the subject was raised with her, Joni-Mai responded with "I don't care if my hair falls off, Mummy!". She's so very brave, she fills all of our hearts with absolute pride.

FINALLY!!! A DAY OUT!!!

SUNDAY 30th OCTOBER:

Finally, a day we can smile about! Today we made it to the National Seal Sanctuary, Joni-Mai had her insuflon changed, without even flinching. She had her G-CSF and then was allowed to go. The plan was to go to the Seal Sanctuary, have dinner and then go back and watch a film with some popcorn and treats.

The Seal Sanctuary was lovely, however, it decided to rain as soon as we got there. So, our trip was cut slightly shorter than we had anticipated. We were all damp and cold but we were not bothered because we were enjoying a day out. Off to find somewhere for a nice roast dinner... Was slightly harder to find than we had imagined it would be. In our minds, we would find a nice cosy country pub and have a good old fashioned roast dinner, in reality we drove for about an hour from pub to pub to find nobody serving a roast dinner... Until we got all the way into Penzance, we stumbled across The Lugger Hotel after popping into four other pubs. It was a tad strange, but the pudding was nice. When we got back to the car, there were piles of kelp on the pavement where we were parked, it turns out the sea was going slightly crazy and the waves were very excited. Maybe the great Sea Cat had something to do with the waves? It was very funny when Daddy was strapping Daisy into her car seat and had to duck down to avoid being soaked by a big wave!

The drive home was something rather special, the fog that had descended upon us was unreal. Possibly like something from a war story, maneuvering the country lanes with 0% visibility was interesting, particularly as we reached the house with its cliff side road... I'll leave you to imagine how scary that was for us all! We finished our disastrous day with fireworks and "The Princess and The Frog" on DVD. Everyone went to bed happy after having had our first and last day out in Cornwall.

HURRAH!!!

SATURDAY 29th OCTOBER:

After a restless night for Joni-Mai and her Daddy, we were told that her blood counts had miraculously boosted to a level that the hospital were happy with. The fluctuating temperature had gone down and her blood cultures had shown that there was no infection in her PICC line. Joni-Mai was allowed to leave the hospital!! After another G-CSF, we were allowed to take her back to the house, where we had a halloween party - to celebrate!

Joni-Mai and Daisy played trick or treat in the house, knocking on all the bedroom and bathroom doors to receive goodies from us all.

A brilliant end to a rubbish week!

Another day in hospital

THURSDAY 27th & FRIDAY 28th OCTOBER:

Joni-Mai remained in hospital, after numerous blood tests and doses of antibiotics, her low blood counts were not moving upward. We were told that she would have to stay in for the weekend and that she may have to have blood transfusions to help boost her levels. The level of infection in her blood was also increasing which was worrying for us. Joni-Mai was missing her holiday and was spending yet more time in hospital, understandably, she was getting very grumpy and fed up with everything. As much as we tried to keep her spirits up, not very much was helping - not even watching Tangled!!

The Mousehole Cat

I thought I should share this with you all, our reason for wanting to visit Mousehole so badly is because of beautiful children's book called The Mousehole Cat.

Please watch the video post to experience the story for yourselves, the illustration is just stunning and is very true to the little fishing village.

Things not going quite to plan...

WEDNESDAY 26th OCTOBER:

Today, we had planned to go to the National Seal Sanctuary. We got up nice and early, had a lovely full English breakfast (Mummy cooked full English breakfasts for 8 people!!) and got ready to go out. We had to go to the hospital, first - Joni-Mai needed another G-CSF jab to help her blood. We arrived at the hospital slightly later than on previous days and had a slight wait. We didn't get out of the hospital until quite late and had to get some groceries on our way back to the house (to collect Sam, Lauren and Sophie). By the time we had reached the house, it was quite late in the afternoon and therefor was too late to go to the seal sanctuary. Instead we went to the beach and played in the sand for a while. Joni-Mai and Daisy wore their new welly boots, Uncle Sam jumped into the sea fully clothed and Mummy and Gramma got caught out by a wave that came in faster and further than they had anticipated. We all had a lovely time but had to cut our trip short because the tide decided it was time to come in. Joni-Mai thoroughly enjoyed her time out on the sand and did not want to go back so soon. Daddy suggested that perhaps we go to Mousehole (we've wanted to go there for a very long time) and when Grandad suggested we go out for dinner "Mousehole for chips" was the suggestion that won the vote.

A wonderful evening was had by all but when we reached the house, it all started to go a bit wibbly-wobbly... As part of her post-chemo care, we are meant to monitor Joni-Mai's temperature very closely, we take her temperature as often as we can as a temperature could mean infection, which - after chemotherapy - could be very dangerous because of the lack of white blood cells. Unfortunately, her temperature was above 38 (deg. C) which is too high. We stripped her off but it was still too high for someone who was neutropenic (basically an extremely low neutrophil count). After a telephone call to the hospital, Joni-Mai was to be taken in and admitted for monitoring and possibly for antibiotics.

Our little princess was confirmed to have an infection and had to stay in for a course of antibiotics, IV antibiotics and oral antibiotics. More blood samples were taken - including some extra for blood cultures to see if she had an infection within her PICC line. She was to stay for at least 48 hours, something we had not anticipated for the week of her holiday.

Another day, another jab!

TUESDAY 25th OCTOBER:

Today was nothing spectacular, we got up and pottered about the house and got ready to go to the hospital. Today, Grandad came with us - so he could see how brave Joni-Mai was when she has her G-CSF. We drove into Truro and headed straight to the hospital. Today, Joni-Mai was very anxious about having the jab in her special button (insuflon), she knew that it hurt and was very reluctant to let anyone near her! We promised Joni-Mai she could have ANY dinner of her choice if she let them give her the jab, and of course she chose a roast dinner with all the trimmings! After a set of blood samples were taken and a few ear drums had been burst with her screams while they jabbed her, she left the hospital smiling and joking.

Grandad took us all for breakfast, Joni-Mai decided that she and Grandad had to have EXACTLY the same thing for breakfast - much to Grandad's dismay - and her choice was to be: scrambled eggs, bacon, beans and hashbrowns (Grandad HATES hashbrowns, we managed to get her to allow him to have chips, instead!). Joni-Mai also decided that she'd like pudding after having breakfast. She wanted ice-cream and only ice-cream would do, unfortunately we had left her coat in the car, so in order for her to have ice-cream Grandad bought her a brand new coat!

After our morning in Truro, we went back to the house. Mummy cooked a full roast beef dinner for 9 people while Daddy and Grandad went fishing and Gramma took Joni-Mai and Daisy for a walk and to play with bubbles on the terrace. It was a lovely day (minus the jabs!!) for all, followed by a huge roast beef dinner!

Holiday!

MONDAY 24th OCTOBER:

Today we woke to the waves crashing against the cliffs below us and lots of rain. We had to go to hospital in Truro to have a G-CSF and to have the dressing changed on the PICC line. Joni-Mai was anxious but the doctors were lovely, they assured us that she could be treated here should she fall ill whilst on holiday. Joni-Mai's appetite appears to be returning, too. She hasn't stopped eating today - eating lots of bread and butter and requesting macaroni cheese and McDonalds.

After returning from the hospital, Daddy, Joni-Mai, Daisy, Gramma and Grandad went exploring and played on the beach down from the house. They all got a bit wet but enjoyed themselves. We will pop some pictures on when we get the chance to.

Oh and for anyone wanting to know just how close we are to the edge of a cliff...

GCSF and LOOOOOOOOOONG car journeys

SUNDAY 23rd OCTOBER:

To help Joni-Mai get better after her chemotherapy, it is necessary that she has daily injections of G-CSF. G-CSF lowers the risk of infection developing within the body - as chemotherapy kills off white blood cells, leaving you prone to infection. To save Joni-Mai having daily jabs, she has had an Insuflon placed in her thigh. Our day started with a trip to our local hospital - to administer her first dose of her G-CSF and to have her Insuflon fitted. She wasn't pleased, starting her holiday with an injection but, she doesn't understand the risks of being without the help of medicines. Her Insuflon will be used to administer daily shots of G-CSF while we are on holiday. Again, to lower the risk of infection.

After leaving Queens Hospital, we started on our way to Penzance. A long car journey with lots of stops. It took about 7 hours to get here but we have arrived at our cliff-top castle for a week of family fun.

You can see pictures of our holiday castle, here.

The first view of our holiday home for the week.

The whole family relaxing, after a whole day of driving (L-R: Grandad, Daddy, Aunty Smoph, Daisy, Gramma, Uncle Sam, Lauren & Joni-Mai)

Cuddles!! Daisy & Joni-Mai