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!