Joni-Mai

In 2011, when Joni was just 5 years old, she was suffering with an intolerable pain in her right thigh. After taking her to our local polyclinic, who told us she had a haemotoma, we decided to sit on our hands and follow the Dr's advice. The weeks went on and the pain came and went, I was not happy to go on any further watching her suffer, so a return visit to our own GP beckoned. What happened after this was beyond imagination, a whirlwind of hospitals and then a bone biopsy for poor Joni. After just over a week of waiting, we were informed that Joni had what was known as Ewing's Sarcoma, a rare sub group of primary bone tumours (around 30 people are diagnosed, each year, mostly being teenage boys...). A hard and gruelling year for all of us, Joni had 14 rounds of chemo, various minor operations, a stem cell harvest and had her whole right femur and part of her hip removed and replaced with metalwork. The year was followed with being put into remission and lots of physiotherapy to get her moving properly, again, and getting back to normal family life...We returned to our normal life, relatively quickly. Enjoying holidays, going back to school and work and just enjoying 'normal'. We celebrated a year in remission in Disneyland Florida, her wish that was granted by Make-a-Wish. A whirlwind trip of a lifetime, that was shortly followed with the return to school. With normality, however, came a bunch of various niggles and trips to the GP for different aches and pains. All of which were seen as normal... This is where things go a bit blurry! Joni bumped her head, a normal thing for a 7 year old to do (albeit a clumsy 7 year old!!! It's in the genes, you see!), especially when playing about in her bedroom. A bump appeared, which after a couple of weeks, did not disappear. It went down a little, but did not disappear. We informed her oncology team, they suggested that the placement was a particularly hard part of the head and if it were not causing pain, it is probably taking its time to go down. Again, we waited but checked it daily, myself growing more anxious, I decided to call her oncology team after it had been there for 6 weeks. They called her in for her oncology review a few weeks early and told us that they should be worried as she was presenting with a shadow in her chest scan that very morning.Another week of scans and a week later we were told that Joni had relapsed, her cancer has indeed returned to various sites which are all bone, one being the bump on her head.We are now faced with yet more chemo, but, we don't know how much. She has also had radiotherapy too. Joni has endured so much in her seven years and to be honest It's all very scary for her and us too. The rest all depends on what happens with the next lot of scan results. As you see, we have a tough time ahead of us, so we really appreciate all of your love and support at this horrible time for Joni and also her little sister Daisy, who will spend a lot of time away from mummy and daddy in the coming weeks.

 

UPDATE! SEPTEMBER 6th 2015!

 

With hearts full of deep and true love, we have to say our saddest goodbye to our most precious treasure, Joni.

Our beautiful and tremendously brave girl fell asleep last night after a beautiful day of Bath bombs and sunbathing. She fought so incredibly courageously right until she left us, last night.

Remember MooMoo with love and happiness in your hearts.

 

Have courage and be kind...

 

 

UPDATE! APRIL 2015

We've been quiet, recently. Things have been a bit stressful and hard going for us as a family.

After finishing her 8th course of the last combination of chemo, it was decided to have a treatment break. Give her a chance to recover and feel better before deciding what to do next. Unfortunately, her break wasn't very long before we started to see changes. For some time, Joni had been complaining of pain in her head above her right eyebrow. We had managed to keep on top of the ...pain but, it was progressively getting worse. Her eyesight was suffering, seeing double occasionally and intermittent blurry vision. For us, this was worrying, so we took Joni into her treatment centre where they kept her in to work out a pain management regime.

After she had been home for a while we noticed a very small lump on the top of her head. So small that it could only be seen when the light shone on it at a certain angle. Another few trips into the hospital and an MRI scan has shown that she has further disease spread.

She does have a new spot on the top of her head, another spot above her eyebrow which was causing the pain, her existing tumours on her head have also grown both above and below the bone. This, in turn, is pressing into her brain and is pinching her sinus tube.

 

UPDATE! NOVEMBER 2014

 

Sadly, Joni has yet ANOTHER tumour next to the existing tumour on her skull. Despite the area already having been treated with Radiotherapy, this new tumour grew very quickly and soon overtook the existing tumour in size. This new growth has triggered a re-think to Joni's treatmen and it was agreed that the area needed yet more  radio therapy and Chemo. The tumour is now pressing on her brain. This news was devestating to us all and it is clear that we are very near to the end of our options here in the UK!