News

Positive

May 30, 2018

We were able to discuss with the doctors the images that we saw yesterday. There is indeed a deficiency of about 40 % of one of the brain veins but this is not critical and does not require surgery. If the cause is unknown, it is not directly related to intra-arterial chemotherapy which is delivered via different arteries. So we're going to be able to do it again very soon (Zozo won't be very happy to return to the hospital) and we will treat this vascular problem with aspirin as prevention, which is sometimes more effective than putting a stent, as indicated by our doctor.

Thank you all for your continues support and love and Zoe's birthday wishes.

 

Thank you for all your regular prayers that we need so much, and then also all your prayers and special thoughts like those of today that help us.

Shock

May 29, 2018

If the tumour seems to be stable on the images of today's MRI, we discovered, however, on the scans of March, April, and  now part of Zoe's brain is not receiving enough blood flow and therefore a critical situation casuing a possible stroke risk for Zoe. She looks in shape with energy here in the sun with daily exercise in the pool. So much more energy than in England.

This is a real shock and we are obviously very concerned. This kind of image is new to the hospital, we can't tell  if it is a new condition of Zoe.No one knows. Zoe will not receive her 12th treatment of intra-arterial chemo tomorrow and instead a specialist scan has been recommended to us to know a little more.. Unfortunately, we do not know more about the procedure, the deadline for obtaining results, the rest, etc. 

It's a hell of a blow to morale and very hard psychologically, but we have to stay strong for Zoe.

MRI

May 28, 2018

The MRI went well. We all went back to the apartment. We're resting. No results until tomorrow. Thank you for your messages of support and love and thank you for keeping us in your prayers

Mexican Party

May 28, 2018

We all know birthdays are meant to be special days. Zoé’s 5th and 6th birthdays were definitely special with all of our amazing friends organising them for us in the UK, and Zoé‘s 7th birthday away from our family in Mexico with our new caring and loving friends was certainly no exception.

We had all been looking for that milestone and the big event. Back in April, our Mexican friend Cordelia simply asked Zoé what she wanted and she made notes. A Princess and Pirate-themed party. I remember we adults were smiling as most of the things Zoé wanted were either ‘big’ or they came right out of fairy tales and like only provided by companies. For spending time with Cordelia and seeing how much she loves Zoé I should have known she would take the “request” seriously. If at the time I thought Zoé was funny and definitely over the top, it was certainly underestimating Cordelia’s family’s enthusiasm in making everything happen, and probably also the Mexican culture and the fact they certainly know how to party!!

Oh my. It was all about princesses and pirates indeed. It was colourful, with everything arranged with good taste and details. It was beautiful. There was everything Zoé asked for. It was incredible. It was ‘wow’ here, ‘wow’ there, ‘wow’ everywhere non stop. It felt like we all went to Disneyland for the afternoon. Little and ‘big’ (it doesn’t sound right here 🙄 - adults I mean) princesses and pirates everywhere, as wished by our Princess. Our close DIPG friends (we wish there had been more who could attend…) and Cordelia’s large family and friends. Friends everywhere. Lots of smiles and laughters, despite the circumstances… And the day was such a beautiful day - 38°C. We all loved everything and had such a blast all together. However ‘excessive’ and almost surreal it might all look, it felt so good and it felt like life was ‘normal’ again in a way even if only for a few hours. You just did not want the magic and the smiles on everyone's faces to stop.

One year ago, we were about to be accepted for treatments in Mexico. If it was the destination of ‘hope’ for our DIPG kids, I must admit we parents were not too sure of such a remote and unknown destination, and yet we had to try and follow our hearts. Little did we know at the time we would make so many good friends and grow so fond of the country and its culture. Little did we know some friends would become like family to us. We would like to thank Cordelia for putting everything together and so beautifully and perfectly. We would like to thank her family for making Zoé’s dreams come true for her special day. We are and will always be so grateful for those fantastic fun moments and those new memories we have made again. 💝

We would also like to thank everyone who came, thank you also for your lovely presents. 

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Happy 7th Birthday Princess

May 26, 2018

Zoe's happy and very proud to be 7 And when she's happy, we are just as much!

Two Years

May 21, 2018

.Today, 22 May 2018 is another special day and milestone in what it marks 2 years since Zoe's diagnosis.

Today, 22 may 2018 is another special day and milestone in what it marks 2 years since le's diagnosis for Zoe and our family.

The sunday where we were going to miss a birthday party to get an MRI in the hospital hoping to be reassured.

Hours of delay before being taken, and then finally our MRI without anaesthesia to save time, as desired by the doctors. Zoe being terrorized.

Sylvain and I were in the big waiting room. Sylvain was watching football on one side of the room,  I'm watching Britain''s Got Talent on the other. Without knowing it, we were living our last moments in "normality". and then the doctors came to pick us up without talking to us and take us to a small room. Zoe had a brain tumour, that's all we wanted to tell us that night. Zoe was going to spend the night at the hospital for observation. The medical team was going to meet and we'd see them again the next morning with Dad. In another small private room with always those handkerchiefs at hand.

And it was the morning of 23 May that we were hearing for the first time about this monster - one of the worst pediatric cancers.

Sylvain asked " when do we operate?" . We were told that it was not possible as where the tumour was it was impossible. We are offered radiotherapy which will only save a little time, 9 months on average, hence the need to return home and create memories. Also the importance of trying to live normally...

Our "Medium-sized tumour" that we were talking about the night before was actually 5 CM. I still see them asking us repeatedly " you're sure Zoe never had headaches?"

It was in English and yet it would have been Chinese. It would have been the same and completely incomprehensible because it was impossible to ingest. Cancer only happens to others. Not the kids. Not our little Zoe, not our little Miss Sunshine. Not to our pretty family. Not to us. We had a healthy life. We were too happy. We had the chance to live abroad, we were bilingual, we loved too much life... and yet, it's our princess that cancer has chosen... 

Two years post-diagnosis is great, but it's not enough when you should have your whole life ahead of you.
We're still fighting princess. Already because Zoe in Greek means "life". and then also because life only makes sense with you.


We will never give up. We all love you too much Zoe.

Lemon Face

May 09, 2018

Have you done your 🍋 Lemon Face Challenge 🍋 yet?

It is fun and it only takes a few minutes and it would help raise awareness about that monster of DIPG. Click on the page above for more information.

Thumbs Up

May 08, 2018

All being well with Zoé's condition, she will have her 12th treatment of IA at the end of May. It is very likely we will now be flying to Mexico on Thursday 24 May. It will be her 7th birthday on May 27th so if you' d like to send Zoé a card, just make sure it arrives before the 24th as we are also likely to stay in Mexico the whole summer and have three treatments.

 

All being well again.

Yippee we can go

May 07, 2018

We can go to school this afternoon, yippee! Someone was happy and we had to get ready quickly not to waste any time!

Garden

May 03, 2018

Today was sunny again so we could have another picnic and stay another three hours in the garden, that was lovely.

Zoé's spirits are still high and she still enjoys a good laugh.


Who would guess Zoé has a fatal brain tumour? And yet, she is slower again and walking seems to be more and more difficult. If she can walk to the bathroom or to the garden with assistance, on the rare occasions she tries walking by herself, she only manages to walk the length of walls to try and reach what she needs. She is not able to stand by herself at the moment as she feels immediately dizzy. She needs someone close by all the time. I just so much hope it is only temporary and she can gain some of her confidence back...

Tears

May 01, 2018

We are desperate to go back to school. We were up early this morning and despite the terrible weather Zoé wanted to go to school. So we both got ready and I rang the school to let them know Zoé was coming. Unfortuntaley there are still lots of germs in the school  which meant no school and a lot of tears instead. Our hair was done and even rabbit was ready! So many tears that we now feel exhausted... We will try again soon hopefully.

Back to the UK

April 24, 2018

Zozo who falls asleep just when we have to leave..

Always with love

April 21, 2018

Today, 22 April 2018 marks 23 months post-diagnosis. Zoe is well here, tired, but here with us.

Our life will never be the same, we know that. Paradoxically, we are living both deep and slow. We adapt as we can and love and always appreciate life, certainly even more.

Exhausted

April 19, 2018

It's hard again today. Zoe stayed exhausted despite a good night, and she doesn't have any strength, she hurts everywhere and is fed up.

 

Zoe ate a little bit, we hope it will stay in her little body. We hope that sleep will help.

Always With Love

April 18, 2018

Everything went well and Zoé woke up a couple of hours ago. As always, she was upset to start with and then relaxed with her aperitif, food and a well-deserved Coke.

She was asleep by 7.30pm again as completely shattered from the procedure and certainly from starving all day (and the heat of course).

We tried a different hospital today as cheaper plus we were also told they would also take great care of Zoé so we wanted to have a go. Although it didn't start well from Zoé's point of view "It's small...", "It smells... (only downstairs though)", "There are no colours...", and "I look like a boy... (with a gown with dinosaurs), we soon realised we were in good hands and would be well looked after with a very friendly and caring staff. Food is also great (I was also starving!). We even got some biscuits for the night if we are hungry and I can go and make myself some coffee any time, which I think is also another good point to that hospital.

We have now solved the problem of the white walls with stickers. Of course, we have asked for permission before and they very much liked the idea.

You strive to make Zoé's life/our life as a family and pretend everything is fine for Zoé. But your mind never is at peace when your child has cancer. It only gets worse with more travelling ahead, more scans looming and another treatment on its way. This time we felt petrified with so many kids struggling and some even passing. I dreaded meeting the doctors yesterday and it was even worse today having to review and discuss Zoé's latest scans an hour before treatment. It's a horrible feeling. Some days are obviously better than others, but whatever happens, good or bad, happy or sad, you still have to pretend everything is fine and carry on for Zoe. We are not that strong or brave, we just love Zoé so much we would and will do everything we can for her, for our family. With positive news today, it is another small victory and tonight life feels even better and certainly worth fighting for.

All being well with Zoé's condition, we will be coming to Mexico again for treatment in another 6 weeks' time. All being well, we will celebrate Zoé's birthday here and 2 years post-diagnosis. All being well, we will spend the summer here again just like last year.

One day at a time... At Zoé's pace... Always with love...

Good News

April 17, 2018

We have been told that the tumour is stable and even a slight reduction of 6,5 cm square to 5,6 cm square. The stain is now a cyst so good news. We're happy! Thank you all for your prayers, your support and all your love for Zoe and our family! We continue the fight.!

Pancakes

April 17, 2018

We finally got out of the hospital at 3pm, to take our aperitif by car because we were so hungry and thirsty! And tonight, it was pancakes, because we wanted to.


We'll finally see the doctors tomorrow at 2pm, just before the 15-hour intervention, 

Thank you all for your support messages, we need so much, and tomorrow even more!!

Sunshine

April 16, 2018

We avoid TV as much as possible with this beautiful weather and yesterday afternoon, it was a walk in the sunshine.

New Furry Friends

April 15, 2018

We are so happy to have found our Mexican friends, these people in the heart who every time make our stay in Mexico so special and make every moment of beautiful memories.

You remember the chicks Blanca, Cordelia's mom, brought back to make Zoe happy? What a nice surprise it was! They're still here and they've grown up already.

And Zoe who told Cordelia the last time she'd like to have a hamster, but it wasn't possible because we were traveling too...and so today we went as a surprise to go and buy a hamster - with a very excited Zoe.

 

Finally, it's not one hamster, but two, which we brought back because they are tiny and cute, And a pretty cage 😊

Yesterday we saw some other DIPG families, around a BBQ and swimming pool. Our friends, kindly invited by Cordelia's family, with the cousin and the neighbours, The good company certainly, but also the weather, the sun, the heat, it does Zoe so much good.. It's so much nicer than watching tv sitting on the couch.

Tomorrow, at noon Mexican time, it is MRI, and Wednesday our 11th treatment.

 

We are concerned with Zoe has more and more difficulty walking without assistance and multiple anxiety attacks. She also has had a urinary infection, as in December. It is painful, even more when you are not at home (even if our host family remains so understanding and supportive). The day still remains sunny for us all.

Mexico Bound

April 12, 2018

On our way again and seeing our special friends at the airport.

Precious

April 10, 2018

"Any day spent with you is my new favourite day. So today is my new favourite day."

Painter

April 09, 2018

Being creative at 9.30 a.m.

Flower Girl

April 06, 2018

Not only did the new Mr & Mrs Dell  invite our family to their lovely wedding  but they also picked Zoé as their flower girl. That was such a kind thought of them and it certainly showed their big hearts.

It was a very emotional day and it made the day even more special and memorable for us. It meant a lot to us, thank you so much again.

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