Zoé's Story

Like every little girl her age, Zoé likes her friends, dancing, pink, princesses, Disney, craft activities, drawing and above all getting dressed up! She’s a happy, funny little girl, a little girl full of energy!

However, following a severe case of the flu and high fevers during the week of 7th March 2016, we noticed Zoé had developed a light squint (right eye) accompanied by a vacant stare the following week, both of which then recurred every morning. The fact that Zoé’s eyesight systematically returned to normal between 11am & 3pm each day seemed reassuring and we hoped the problem would be temporary (growth, tiredness, virus, etc.), as did those around us. At the same time, Zoé was systematically waking up every night between midnight & 4am, unable to then go back to sleep.

The initial appointment with the ophthalmologist, on the afternoon of Monday 4th April, showed no signs of weakness with Zoé’s eyesight; her vision was good and her eyes healthy. Her eyesight had however returned to normal at the time of the appointment.

The second appointment, at the Southampton Eye Emergency Department on the morning of Monday 18th April, allowed the medical personnel (nurse, ophthalmologist & consultant) to witness Zoé’s eyesight problem, without being able to explain it. Nonetheless, her eyesight remained good and her eyes healthy. In the meantime, Zoé’s teachers had noticed the problem and its impact on her schoolwork and activities (closing one eye to read & write, writing big letters, concentration, etc.)

It was only after obtaining exactly the same diagnosis a third time, at an appointment on the afternoon of Thursday 12th May at the Southampton Eye Unit, that an MRI scan was suggested and scheduled for Sunday 22nd May.

Zoé had never complained of headaches before Sunday 15th May (a single instance of neck pain, which didn’t last long), and then in the morning on Thursday 19th & Friday 20th (3-5am), at which point the pain became so intense it lead to a trip to A&E on the morning of Saturday 21st May. As the MRI scan was scheduled for the following day, Zoé underwent the same tests she had done previously, and we were sent home at the end of the day.

 

The MRI scan turned out to be a traumatic event for Zoé (no food or drink until 4pm & no anaesthesia due to a lack of time, contrary to what we had been told), and our entire lives were turned upside down upon hearing the initial diagnostic that Sunday evening - Zoé was suffering from a brain tumour of moderate size - and a first night in hospital, followed by the second, final, diagnosis on the Monday morning, by the full consultant team, of an inoperable and also incurable tumour, with a life expectancy of between 9 months and 2 years.

 

Deeply upsetting news.

 

We were left distraught… “It will be a daily struggle . . . There will be ups and downs . . . Try to live normally and enjoy life as much as you can . . .” Those were the words of the consultant that Monday morning. Words that still resonate… We couldn’t show our distress or our sadness.

 

We would have to fight for our little Zoé.

Sunday 22nd May marked the beginning of Zoé’s treatment, with medicines & several general anaesthetics to prepare her for 13 sessions of radiotherapy under general anaesthetic, every weekday from Monday 6th June to Wednesday 22nd June, at Southampton General Hospital (UK). Our little Zoé, who never made a fuss over taking her medicine and was always very brave in the face of all the treatments she’s already received. Our little poppet who went to school every time she could (every afternoon after her radiotherapy sessions). An absolute delight, even in sickness. Two days after completing the radiotherapy sessions, Zoé contracted chickenpox, which delayed our departure for France, where we were to spend the holidays with family & friends. This lead to some extra stress, but also some extra observations & medicines.  

 

Our well-earned holiday finally started on Thursday 30 June. Although initially tired, Zoé perked up very quickly. We made the most of every day in July and August when Zoé was feeling well: swimming, pony rides, camel rides (that’s right!), cinema, boat/pedalo trips, teepee camping, water parks, zoo, etc. We were always in great company, thank you all for those wonderful moments. September was very busy, but also very positive, starting with an MRI scan upon our return, on the 2nd, which showed a slight reduction of the tumour… Zoé also started Year 1 at school… We received some fantastic personalised trainers for Zoé from Supershoes UK… Make A Wish UK kindly organised a 4 day trip to Disneyland Paris where we shared some magical and unforgettable moments… Zoé was also lucky enough to be transformed into a real life princess for a day… Thanks to the UK charity Hannah’s Holiday Home Appeal we escaped for a weekend to a holiday home in the New Forest, and had an exceptional trip… We were also delighted to have family and friends from France come to visit us from October to mid-November, such wonderful company did us all good. In December, thanks to friends & family, we visited Father Christmas’s village at “Lapland UK” near London, and also Father Christmas’s Hamlet in Haute-Savoie (France). And l’Association Princesse Zoé even managed to send us back to Disneyland Paris for 4 more magical days! And that’s on top of all the gifts we’ve received since Zoé’s diagnosis, the donations, the thoughtfulness of friends & strangers alike, and all the messages that warm our hearts!

We must also mention the positive role played by Zoé’s school, St Monica Primary School; the entire staff (headteacher, teachers, teaching assistants, nurses, dinner ladies, etc.) and also the parents have supported us since the beginning and we cannot thank them enough. No rules for Zoé: she goes to school as and when she can, at any time of day and for any length of time. Her activities and meal times are arranged based on her needs thanks to a teaching assistant. She is always welcome. We are grateful for the flexibility. She attended every day until the end of October, at which point it was recommended we keep Zoé home due to a number of viruses at school. Since the start of January, Zoé goes to school from 10am to 1pm, 2 to 3 days a week.

 

On the medical side, Zoé underwent a quick scan on Monday 7th November, following the onset of nausea in the mornings, and intense nausea at the weekend, which revealed no notable change in the size or appearance of the tumour. Nonetheless, Zoé started taking anti-vomiting pills in the evenings, and since 8th December, mornings & evenings. Our next MRI scan was scheduled for 9th December and psychologically, the wait was more difficult as the results, expected on Monday 12th December, would determine whether or not we would be able to leave the following day to spend Christmas in France. Thankfully, the size of the tumour was stable. After a few motivity and coordination tests with the consultant, which turned out to be fine, we were finally given the go-ahead to travel, to spend the Christmas holidays with family & friends. On Sunday 4th December, but especially during our time in France, Zoé lacked strength in her legs on certain days. She seemed more and more to be walking on tip-toes (on eggshells) and at times in an off-balance or disjointed way.  She also seemed to struggle more to articulate words and therefore to speak.  As a result of these new symptoms, another quick scan was scheduled on Monday 10th January, which again showed the tumour seemingly to be stable. It is however worth remembering that it is not the size of the tumour that needs to be kept under control, but the symptoms.

It’s now been 6 months since Zoé completed her radiotherapy sessions. Her eye problems have decreased, although they occasionally resurface, especially when she’s tired or concentrating. Zoé’s temperament has changed: she’s still growing up, but alongside her illness we’ve noticed a loss of self-confidence. She has become very shy and seems less at ease in group settings. Now extremely sensitive, she cries very easily. She can be overwhelmed by stress and panic at the slightest change in routine, which can lead to sudden bursts of anger.  As for food, she has become very fussy. Smells (toast, coffee, soup, etc.) are another problem that we have had to adapt to.  If all goes well and no new symptoms develop, a routine MRI scan should be scheduled for early March.  

 

The results of the MRI Zoé had on March 17th show a slight growth of the tumour. However, after checking Zoé’s motricity and coordination (she is finding it harder and harder to walk and can only walk short distances now, but her balance is fine and she does not fall or bump into things...), the consultant thought Zoé is very well and just as “stable” as she was in December, which is “good” news and is what needs to be controlled really. We had two handrails fixed by Zoé’s physio just by our entrance to help her coming in or out of the house and they have been very useful. She gets very nervous for everything and has developed OCD. We cannot put anything away without her consent or she will get mad at us... or anybody else! She does not want to go out for fear we will be putting her toys away or will not have any time left to play. One morning at school has now become a bonus!!

 

On a positive note, we have more appetite at the moment and eat various food unlike in the Summer but we need to make sure the food does not get mixed together on the same plate... Zoé will be having re-radiotherapy on Monday 15th May and for 4 days. Although Zoe had it under GA the first time in June last year, the hospital thought it better not to have it this time. Therefore, we attended the hospital 2-3 times a week for the last two weeks to try and get Zoé familiar with her mask (she made it herself), Lego machines and then the real machines. Every time, the medical team came up with all sorts of ideas to try and reassure Zoé, whether it be a long ribbon that both mummy and Zoé would hold to show her I was not far, or presents, cupcakes. etc. Most of the time, Zoé came dressed up and both staff and patients absolutely loved it!

Just like so many other DIPG children and their families, we looked into experimental and extremely expensive treatments like immunotherapy and intra-arterial chemotherapy treatment that is currently only available in Monterrey, Mexico.

 

Treatments, medical fees and living in Mexico would cost around £300,000. With the help of family and friends, we have already been fundraising for a year to make Zoé’s wishes come true, but at this crucial moment, we will need greater help. We are very thankful as LOTS of you have donated and/or helped us raising money.

 

We will still need your help, we will also need to mobilize the community to reach more people. Failing that, our little Zoé does not stand a chance to extend her life and increase the quality of her life.

 

Time is of the essence.

Update 2 July 2017

After contacting the consultants and sending them MRI results and clinical reports, we found out on May 31st that Zoé was accepted. One would expect we would have jumped for joy with such news, but we were suddenly beset by apprehension with so many unknowns ahead such as when to leave and how long for?

Where to stay?

 

Will we have enough money? 

 

They expected us to be there on June 6th, which was just unrealistic…

Zoé had just had her second round of radiotherapy. We knew she had benefited a lot from her first round in June 2016 being nearly symptom-free for nearly 7 months and we were hoping that would also benefit a bit from that second round. Communications with Mexico were short and rare. A misunderstanding with Mexico made us believe that we would be able to travel to France to visit our families and friends for a bit whilst she would be on good form before heading to Mexico. We were wrong. We had just booked our tickets to France (11-28 June) when we received a text from Mexico the next hours or so saying we would have to be there within the next 2 weeks. Failing that, we would have to provide them with a new MRI scan, which might not be to our advantage this time as the tumour was likely to be swollen from the recent radiotherapy. We had no choice but fly to Mexico and have those treatments for Zoé. Especially as it seemed as though most DIPG families were flocking to this promising treatment in Mexico, with some of them being denied treatment there... It was a once-in-a-lifetime opportunity we could not miss.

 

It was OUR chance to help our little Zoé.

So after booking our flights to France on June 5th, we cancelled them on June 7th, and we then booked new ones for Monterrey, Mexico for Monday 12th June! We had our first appointment on the Wednesday with Dr Siller and Dr Garcia, and we were booked for an MRI and our first treatment of Intra-Arterial (IA) Chemotherapy the following day at 8am… As soon as we entered the hospital we were stunned as were shown the way to a proper bank desk to make a first payment of £3,780 just for the MRI and for staying 1.5 day in hospital (this fee does not include complications). We also made a second payment of £8,615 for the 1st treatment of IA chemo. At least, everything went well for Zoé. Most medical staff would not speak English - which sometimes makes it really tricky to communicate - and yet they all remained very caring & friendly.

Zoé only had a couple of headaches and tummy ache over the last two weeks following her fist IA chemo. However, whether it is the radiotherapy or the IA chemo, Zoé is much better already, which was confirmed to us when we saw Dr Garcia on June 27th for our follow-up. First of all, no more vomitting… Smells had become a big issue lately, and she is not as sensitive now. She eats more - although she tends to eat the same things over and over. She is livelier, has more energy and more strength in her legs and she now eats/goes to the loo/has a shower without assistance…!! She is clearer when speaking, and we have our Little Miss Chatterbox back with us!! She even sings! again!

There is a minimum of 17 days required between every treatment so our second IA chemo is scheduled for July 6th. We will also have our 1st Immunotherapy whilst Zoé is asleep. The latter requires for Zoé to have 150ml of her blood drawn 7 days before (June 29th), but also 2 days of light chemo (July 4th & 5th) prior to the Immunotherapy itself. All that for a total of £24,745 (transaction fees not included).

All being well and everything going to plan, we are hoping Zoe can have the 5 recommended IA chemotherapies along with 4 Immunotherapies up until September 4th. Subsequently, depending on how Zoé and her tumour are doing and assuming she is fine enough to travel (and also if we have enough money), we might have more IA chemotherapies, every 5 weeks this time. Time will tell...

We would like to use this page to also thank you all for your support and all the help we have received so far. We cannot find the words to express our gratitude in the face of such generosity. We could not have gone that far without you all!

 

 

#allwithzoé