Updated: Sep 11, 2018
Miracles DO happen! In the middle of August, Jorja received the news they were told would never come... she has gone into remission after being told there was NOTHING more they could for her! There is still a chance that cancer could come back, but for the now, she is completely cancer free! She’s been here once before and has been battling cancer for SIX years, such a brave girl! Jorja is still desperate to break the world record for the biggest giraffe collection. She needs 2000 more items! Can we PLEASE help her? This can be stuffed giraffes or ANYTHING giraffe inspired...
JORJA'S STORY: Jorja was diagnosed with CML, Chronic Myeloid Leukaemia on the 31st July 2013 at age ten. I had to give up work with the intention of going back at a later date, and dad had to use holiday and all of his days off to travel to hospital appointments; we got by.
CML isn’t a common childhood leukaemia, in fact it is more common in later life (OVER 60) and more common in men, and almost of unheard of in children, even more so in children under the age of 15. Sadly, it is not curable but with the right drugs can be managed.
Jorja’s first drug which we had high hopes for only worked for 18 months, but in some it can work for 10 years. The second drug worked, but not as well as it had been predicted, which may have been down to the fact it took over six months to get funding and approval.
Jorja’s CML became out of control and a BMT, Bone Marrow Transplant, or donor stem cell bone marrow transplant, became our only option. Jorja had her BMT on the 10th March 2017; we were told if she didn’t have it then she wouldn’t make it to the end of March Luckily Jorja’s middle sister was a good match, so we didn’t have to look or wait for a donor to be found.
Jorja’s dad had to give up his job to in the end as work couldn’t accommodate his need for set days off, even after dropping to only part time. They kept wanting him to work on hospital days, and with no holiday left and Andrew being the only one able to drive, as well as my health problems becoming unmanageable, he was only left with one option and that was to give up work.
So we have no income and all of our bills etc., as well as constantly traveling to different hospitals. Benefits take a long time to sort out, so you borrow from family and friends, miss payments on your bills. This then adds to the stress, if that is even possible to comprehend.
BMT patents with CML can have a much harder time; more complications, side effects, and Jorja had a harder time than they thought she would. At the work up before the BMT we were told of possible side effects from the higher levels of chemo at conditioning, and the transplant itself. Jorja had them all PLUS one extremely rare one, which had to be documented because it was so rare there was no photos or case reports; it doesn’t even have a name. The doctors just called it ‘white fish netting’ because that’s what it looked like.
We live in North Norfolk and the BMT was done in Bristol, so we had to keep two homes running for nine months. Jorja had so many complications that she was in isolation for a large part of our time in Bristol. Money becomes stretched so thinly between the hospital, our temporary home and our actual home. Jasmin and Megan stayed at home, as Megan was in the last year of school, and had to complete her GCSEs as well as pick her next step in education.
Jasmin was also made redundant just before we left for Bristol, so that put more strain on us to spread the money, as well as having her boyfriend move in as well so she would not be on her own. Jasmin has had problems with bipolar for a long time and needed someone to help her with Megan, to try to keep everything as normal as possible, and to support her at what is a stressful and scary time, without all of the extra emotions of the ‘what ifs’ and ‘maybes’ of the CML and the BMT.
We had to constantly buy Jorja new pyjamas as her weight dropped or because of the constant washing and tumble drying to keep everything up to BMT standards, as well as a constant supply of soft blankets and v-pillows for comfort. Everything has to be fresh and clean every day. So two sets of cloths and sheets (can’t use hospital sheets because she is allergic to starch, and the laundry service kept messing up, so it fell to us to supply everything she needed); two clean sets of everything, every day, for nine months. These things don’t last long and once stained they couldn’t be used.
Then there is the constant cost of living at the hospital, having time or any means of cooking goes out of the window. In Bristol hospital you have an M&S, or a news agent. Unless you can find time to pop down the road to one of the tiny ‘high street super markets’ the cost slowly adds up, and it still ends up being microwave meals. You have no real storage space either so you buy as and when you have time, but it’s the cost that gets you.
Don’t get me wrong, we got by and made do, but we had to rely on Grandma keeping them fed at home when we couldn’t find the money to feed us or we had bills to pay.
At home things still happened as normal: school meals, prom, getting everything together to start college, text books, school trips, new uniforms, getting the washer or dryer fixed, the phone bill doubles, the pets, vet bills, even little things like, pens, paper etc. for school, new shoes… all of the normal stuff.
People don’t realise that the help is not there for families; to lighten the load, to help to keep a roof over the family’s heads and food on the table. At one of the hardest times the families have to rely on charities like MY SHINING STAR, set up to help when you need them most. Even they can’t help everyone, as the pot is only so big.
Without MY SHINING STAR Jorja wouldn’t be able to keep in touch with her friends and family, sharing in the things we take for granted.
Jorja’s IPad stopped working, and we couldn’t find the money to replace it. An IPad for Jorja means so very much. She uses it to keep in touch with her friends, sisters, even to take part in school when she is unwell.
MY SHINING STAR helped us get Jorja’s story out, as well as helping us tick more things off Jorja’s bucket list by sharing her story, and because of their dedication to the children and families they help we have ticked some of the bigger things off Jorja’s list.
MY SHINING STAR have helped us more than any other charity, and I don’t mean just money, I mean sharing Jorja’s story, asking if anyone in their contacts can help, but also by giving us their time talking to us helping put us in contact with people that can help if they can.
Some families are in financial ruin, living hand-to-mouth, desperate by the time they ask for help. There is no way of predicting what is going to happen, how much cancer will turn your life upside down. You can’t plan or budget for it. Every child, cancer, and treatment is different, how much it will drain the savings, or how to still work and be there for your child changes for every family. The average treatment is three years, and that’s as long as it goes to plan. That is three years of treatment, traveling to and from hospitals all over the country, sometimes even the world. It’s also the things you don’t think about, like food and drinks, PJs as constantly washing them as well as the staining from treatment, blood etc., extra sunscreen as the child’s skin is so much more delicate. Before Jorja was diagnosed we would use a bottle, maybe a bottle and a half if it was a long summer; but before the transplant the amount increased to two and a half to three bottles; now after BMT she has to wear it everyday rain or shine.
Children are constantly growing and needing new clothes and shoes. Some of the treatments cause weight gain, weight loss, swelling, as well as skin problems and sensitivity of the skin, meaning some fabrics are out of the question. The creams and lotions used can stain everything: clothes, bedding, towels, PJs, even socks and shoes. The washing machine is always on and so is the dryer, all eating money; sometimes even the things we us every day have to change: toiletries, cleaning products, washing detergents.
The bills all increase: phones, water, electric, gas, food, travel, even the up keep of your home and car. The has to be kept in a constant state of readiness as things are constantly changing. You can’t put off anything in the home as the child needs change, for example if the heating doesn’t work you can’t make do till you can afford it, it has to be done ASAP because you have to keep the house just right to help avoid some health problems, plus if you are unwell you always feel the cold more. I could go on but I hope this gives you an idea of why MY SHINING STAR is so important and that the work it does is so important to so many.
Story kindly written by Jorja's wonderful mum Leeann on behalf of her and Jorja's dad Andrew. Thank you so much for your kind words and sharing Jorja's unbelievable journey. We are so humbled we have been able to support you all x
Jorja with her 7353 'Beads of Courage'. Each of these represent a procedure, test, chemotherapy; each bead has a set colour linked to a group of tests, procedures etc. White is chemotherapy, yellow is a stay in hospital, black is every time a needle breaks the skin etc. They help children map their treatment journey, a visual diary. It really does help put how much these amazing children go through into perspective.