Love for Annabelle
Kathie and Adam have made the decision to travel to Mexico so Annabelle can recieve intra-arterial chemotherapy treatment combined with Immunotherapy.
Annabelle will need to have the chemotherapy treatment every 3 weeks for an undefined period of time with each treatment costing around $25,000 and will need the immunotherapy also for the first few bumping the cost up to as much as $45,000 on each occasion.
The family will leave on the 12th of June so they can celebrate Annabelle's 4th birthday at home with loved ones.
We thank you for your continued support of Annabelle and her family.
***UPDATE MAY 4TH 2017****
Last night Kathie and Adam received a call from the Doctors in London where the CED treatment is based. They have had a closer look at Annabelle's MRI and the tumour is growing out of the pons which means the CED treatment will be too risky at this stage.
They have said the radiation may continue to work on shrinking the tumour so it isn't completely ruled out, however not wanting to waste any time, Kathie and Adam have been exploring other options - one of which is an intra-arterial chemotherapy treatment combined with Immunotherapy in Mexico.
***UPDATE MARCH 21ST 2017***
Annabelle has recently been accepted in to a clinical trial in the UK which is called Convection Enhanced Delivery which delivers drugs directly to the tumor. This method involves the surgical implantation of very fine catheters into the brain using a dedicated robotic technique. Early indications are that treatment costs in current trials are in excess of $250,000. Annabelle and her family will need to travel to the UK initially for the surgery and then every 4-6 weeks for infusions at least 6 times so the decision to redirect funds to cover the associated medical costs has been made.
We cannot thank you all enough for your generosity and support through this tough time. Kathie and Adam's main focus now is to buy as much time as possible for Annabelle while we all pray for a miracle.
On the 30th December 2016, our beautiful 3 yr old niece Annabelle Potts, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a highly aggressive and difficult to treat brain tumor found at the base of the brain.
Annabelle was rushed to the Sydney Children's Hospital at Randwick the same day as her diagnosis for further assessment but the prognosis is grim.
The news came as a huge shock to us all but especially to her Mum and Dad (Kathie and Adam) who not only had to come to terms with the initial diagnosis but the fact that they will most likely lose their beautiful little girl. They will no longer be able to look forward to seeing her graduate, get married or any other milestone that those of us with healthy children often take for granted.
Now with Annabelle requiring her parents by her side Kathie and Adam are unable to work and the family are faced with increasing financial pressures because of loss of income and medical expenses.
We decided to establish a Go Fund Me account so Kathie and Adam can focus all their attention on spending as much quality time with Annabelle as possible without the stress of worrying about working or paying the bills.
We love Annabelle as a niece, sister, daughter, granddaughter and friend and your support through this difficult time will mean more to Kathie and Adam than you can ever imagine
Please share xoxo
What this means we will need to do, is bring treatment closer together again. We have had a beautiful three months of ‘normality’ with no travel and treatment, after the wonderful news that Annabelle’s tumor in the brain stem is inactive, but we will need to really get back into fight mode again.
For all of the Canberra locals, we are holding a dinner for Annabelle on the 30th June if you would like to come along so we can meet you and thank you for your support in person. It should be a really fun night
As always, lots of love and thank you for your support
Kathie and Adam
Adam's summary of the meeting is:
‘Dr Francisco went through some of the PET scan pictures with me and the tumour did not absorb any of the three tracers. This means the tumour is not feeding/active. Dr Garcia and Siller are saying even though the tumour can be seen, there is no evidence of disease. Currently the main concern is swelling, so will be looking at treating this as a priority.’
This means the tumour is dead and there are NO active tumor cells detected.
IS ANNABELLE CURED?
No, Annabelle is not cured. The tumour is currently dead and we still need to continue with the IA treatment as all it takes is one tiny tumour cell for the tumor to have a chance to grow. The amazing news is that we will be able to stretch these treatments out again. Our current plan is to look at doing treatment every eight weeks to start, and then, all going well, every three months. It is much more financially sustainable and our family won’t need to be split up as often.
WHAT DOES THE SYDNEY CHILDREN’S HOSPITAL HAVE TO SAY ABOUT THIS?
We have been in contact with the SCH and waiting to see what they have to say. Two weeks ago they said Annabelle was in progression. And one week ago they couldn’t agree if there was tumour growth or just swelling. We have asked to be put in contact with someone who can interpret PET scans and provide advice on the tracers used to verify all of this for us.
WHERE TO NOW?
We need to get Annabelle’s swelling down and stay on top of it all. We need to continue fundraising more than ever as we know that this treatment is working. We need to continue to raise awareness! We said from the start that we would keep Annabelle going as long as possible, not impacting on her quality of life, to give Australia a chance to catch up. There needs to be a treatment in Australia!
We need to relax a little and enjoy life, I do think for now, Adam and I can breath
We can not thank you all enough for your love and support. Every dollar, every post shared and every beautiful message has gotten us here. We will never be able to show the full extent of the love and gratitude we have for you all.
Lots of love
Adam and Kathie
Adam and Annabelle are off to Mexico next Monday for Annabelle's 8th Intra Arterial treatment. It has been eight weeks since Annabelle's last treatment, even though the doctors recommended 5-6 weeks between treatments. Unfortunately we had no other choice as flights over Christmas were ridiculously expensive and long (40-50 hours each way). We are extremely anxious with the unavoidable delay in treatment, but unfortunately, it is one of the things we have to do when the only available treatment is half way around the world.
2018 WILL be a better year! Annabelle will be starting preschool in a few weeks and it will be the year that we show brain cancer who is the boss! We are of course planning to keep going with Annabelle's treatment this year.
Thank you all for your love and support through 2017! We would honesty not be here without it.
Lots of love Kathie and Adam xo
With Christmas coming up, I have so many mixed feelings. As a parent with young children, it is such an exciting time of year, but I can't help but feel sad. Will this be Annabelle's last Christmas with us? According to the doctors in Australia and DIPG stats on the internet, Annabelle's time is already up. Yet she is still running around, playing, going to childcare and preparing for preschool next year. She is still able to be a little kid.
This time last year, we had seen our doctor a number of times. Annabelle's wakeful nights were diagnosed as night terrors, despite my protests to the doctor that it wasn't, and that she was waking up to seven times a night, sometimes awake, sometimes not, sometimes just walking around. I was told that her slurred speech, was just from been tired and having hay fever. I was told her behavioral changes were because she had anxiety. The doctor recommended that Annabelle, three years at the time, see a psychologist.
By mid November, her dizzy spells were were explained by a middle ear issue and her random vomiting was from numerous tummy bugs despite the rest of the family not been affected. At my insistence, a full blood test was done. The doctor said we were looking for a brain tumour, worst case scenario. Tests came back all clear, only for us to find out later that blood tests can not detect many brain tumours including DIPG.
Throughout December, we carried on as normal. The doctor had told us that Annabelle was fine. I asked for a second opinion. In the referral to the paediatrician, the doctor felt the need to write 'mother is very anxious about her daughter'.
As it was Christmas time, we dragged Annabelle here, there and every where thinking she was just tired and run down from the end of the year. She fell asleep in the car wherever we would go, but the doctor had told us she was fine, the blood tests told us she was fine.
Looking at our family Christmas photo from last year, it is obvious that she was not fine. Her face is drooping. About two weeks after that photo was taken, Annabelle started to limp and then the doctors started to listen. An MRI was done on the 30th of December 2016, six months after her first symptoms.
This year has been such a roller coaster. In February, we were sent home from the Sydney Children's Hospital with no hope and told there is nothing they can do. We need to 'make memories and enjoy the few months we may have'.
The treatment in Mexico fills us with so much hope and we have been so blessed to have such a wonderful supportive community around us who not only give us love, encouragement and moral support, but are financially making this Mexico treatment a possibility. For this, we are grateful.
Please continue to share our story. We need to continue to raise awareness. There is such little awareness around childhood brain cancer that our Doctor was unable to recognise the symptoms of a brain tumour or know how to test for it, despite brain tumours been the number one killer of children in Australia. This is not good enough!
Hi family My name is Tamara and I own a Jumping Castle company in Queanbeyan and I would love to donate a Jumping Castle for your family to enjoy for a day to smile on your beautiful children's faces. If you are interested please Call TBC CASTLE HIRE 0406451414
Hi guys I'm so sorry this is happening she's a beautiful little girl! My husband and I went through this last year with our 2yr old son who had a brain tumour and we lived at Randwick Ronald for 10mnths. It's a tough road but you can get through it. We are doing a big fundraiser in feb for Randwick house after all the hard work they do looking after families there. Take care of your selves and no matter what the situation always stay positive and strong, kids are amazing and they surprise you even in the hardest of situations xx
I pray to God and the angels above that this little princess kicks this illness in the butt and lives a full happy fulfilling life beside her family and friends.. I have children of my own and I really hope you get through this kiddo. Much love , prayers and heaps of cuddles.. from my family to you and your family darling xoxo
Hi, Such a heart breaking story. I beg you to look into the "ESSIAC TEA" This tea along with a organic natural, preservative, sugar free diet has saved so many cancer sufferers. The product is not available in Australia at the moment. New Zealand and Canada is where we purchased my friends supply. ^6 years cancer free now!!!! Sending love, light and heaps of healing energy xxx