News

Homeward Bound

January 29, 2018

We will leave tonight with our first flight for Mexico city and our second for London at 23 p.m where we will find Papa.

We have a heart full of beautiful memories and good times spent with our second family here in Mexico and all the friends that we managed to see this time

But for now we're not going anywhere because Zoe is still sleeping.

Well Deserved

January 23, 2018

A well deserved nap and appreciated after so many tears.

Out

January 23, 2018

We have been out for an hour. We cry a lot and we don't know where we are... we want to go home... and we still haven't seen when we've been doing the intra... we are stressed and scream. 

Doctor Zoe

January 23, 2018

We saw the Doctors this evening. Cordelia came with us, which was good as there always is so much information to retain, and company at such difficult time is always appreciated.

Zoé's tumour looks stable from MRI and intensity is 3 out of 15 so quite low, which is good. However, PET scan shows a stain, either new or old they don't know, but which requires attention so they will attack it tomorrow... They didn't look or sound too concerned but we obviously are... 

We will have our 9th treatment of IA chemotherapy tomorrow at 12pm... 

Our next treatment will be in 6 weeks again... , and we will have another PET scan done in 3 months' time...

Today was also our 20th month post-diagnosis. Although 20 months are not much in a life of a child or in a life full stop, it is a long time and definitely a milestone for anyone diagnosed with DIPG and we are very proud of our little fighter and are so grateful for every single day Zoé is with us and we spend with her. 💝

Lost and Found

January 20, 2018

Looking back on our journey… We had a comfortable and safe journey indeed.  Everything went well all the way… until Zoé asked me for her rabbits when going to bed.

Apart from our two old ones we had been carrying throughout our journey ("they can't go in the bag as they are too old and would be damaged.), We couldn't find our Bear backpack and that contained our other 5 rabbit.s It was lost in the confusion of collecting our suitcase.

Everybody who knows Zoé will know how important Pimpinous are for her and the whole house literally went crazy looking for that bag and made numerous phone calls, whilst Zoé and I were in bed…

Until an early phone call on Thursday morning made by the family to the lost property office at the Monterrey airport… with the craziest conversation ever “Have you found a bear with rabbits? A bear full of rabbits in its tummy…” “What?”... The airport happened to have our bear with all the rabbits inside, which made us so happy and certainly made our day!! 

A massive thank you to the whole of our host family for all their help, with a special thank you to Santos for his kindness and determination to find/collect it from the airport for Zoé! And of course thank you to Monterrey Airport for looking after our babies! 

Packing

January 16, 2018

Another day packing and getting ready.


Zoé was well today and she is still very excited to travel again (especially at night) and see our friends again. .

Eye Patch

January 11, 2018

Our oncologist found Zoe in shape. She was pleasantly surprised by her strength in the limbs,. We are 8 months post radiotherapy and we are doing relatively well (our second and last radiotherapy session in May 2017 was to act for about 6 months); our treatments in Mexico must therefore have a positive effect

.

Our visit with the ophthalmologist was endless, but nevertheless necessary. After the tests we made, we were unable to escape the famous drops that sting so much and serve to dilate the pupils and allow to see if the nerves there are healthy. The doctors were happy with the state of our eyes.

 

Finally, the only one who was not happy, was our Zozo, whose view was all confused by the drops and couldn't do anything, and who wanted only one thing to go home to lie down... and of course enjoy her aperitif...  we will even get a bit of Coke=Cola because we will have shown a lot of courage , and rather today because tomorrow is dentist.

Relaxing

January 10, 2018

We haven't been out in the last few days.

 

We'd like to go to school, but with Winter and the illnesses around we need to keep well. Most friends are also sick, so we can't receive them at home either.

So we take advantage to stay warm and rest a bit before leaving next Tuesday... 

Back in Routine

January 07, 2018

We keep in shape despite our left-side facial paralysis that is always present .

We are untroubled with our frozen face... and we keep our pretty sense of humor, we will laugh again and laugh again, we always talk as much and we always sing.

This week we will not go back to school because of viruses and microbes, but we hope to see our friends because we miss them.

Back to the UK

January 04, 2018

We're back home in England.


Thank you for the many Christmas Cards for Zoe, but also the packages.

Thank you all! 

Zoe who bursts out of laughter by getting her hand on the forehead when she sees the pile... " There's enough for me!!" 

Always so much to do (especially sorting!!) but here we are now in bed after this long day without a nap.

A little brighter

December 31, 2017

Dispite a long wait at the hospital for a suspected ear infection and a very dry eye we are a little brighter today.

It is with mixed blessings that a New Year approaches. We dread the exchange of the "Happy New Year" but we thank you for being there for the us and continuing to support our Princess,

Merciless

December 26, 2017

It's always so much easier to write posts when everything's okay....

I'd like to tell you that we spent the most beautiful Christmas on Monday, because at home, it's the 25th... everything was successful; we were all together, we were spoiled, we enjoyed it, Played, we laughed... Unfortunately, the left part of Zoe's face suddenly froze Sunday at the beginning of the afternoon, without any reason and it is still there two days later. We have had signs since the beginning of November and hoped that it would pass.


This new symptom frightens us.  In a second the smile of our Princess has gone, words are less clear and we have more trouble eating and drinking. Thankfully Zoe doesn't seem to realise this change.

We're the sad ones, because it hurts so much to see it like this... we go to bed and we hope every morning wake up with the paralysis that will be gone... and every morning, still in the dark, I know , just his way of talking, that the paralysis is still there.

We were rather "good" before this new test... but the dipg is merciless...

We are now between three countries, without being more advanced as to where to go, what to do and how to do it... our Mexican oncologist recommends a short steroid treatment, which is more than 10000 km from us ... we hope to start tomorrow via the hospital in Lyon. Hopefully this will help.

Reflection

December 23, 2017

On Sunday, May 22, 2016, we discovered with astonishment that Zoe had a brain tumor, so-called "average" to not scare us... just that information and we spent our first night at the hospital.

On May 23, we were told that Zoe had an inoperable and incurable tumour... and we were "invited" to go home and create memories.

That was 19 months ago...

Life is no longer as rosy as it was; it became yellow for pediatric and grey for cancers.

But life is there and we enjoy it, even if differently... no long-term projects for us, we enjoy life day by day, hoping that there will be many more days, many months, Many years... hoping that life will be just long, and without too much suffering... because we love life..

Keep fighting like a "Tiger" little Zoe, stay strong. We'll always be there with you and it's together that we will fight. It's together that we move forward...

You're the little girl we dreamt about Zoe, and we love you so much...

Thank You

December 22, 2017

We will forever be grateful to you all for all your support, both financial and moral, for all this solidarity and generosity towards our family, for all your love... ❤️❤️

Home Sweet Home

December 21, 2017

Home sweet home Chambéry… ❤️

Hoping that everything will be all right now, that we will rest and spend pleasant Christmas holidays...

More travel

December 21, 2017

We finally arrived in England...

Despite a delay in flights we were greeted by friends upon our return to London.

A tree was waiting for us when we came back, presents for Zoe, chocolates and treats for us, and very pretty cards for Christmas from everyone who thinks of us and wish us the best... thank you... ❤️ A lovely greeting after a long, long journey.

Zoe seems to have had a urinary infection for two days. If ever since this summer she often goes to the toilet "still not knowing her body" as she says herself, we have come to the point of having a great deal of trouble... so it is two accidents we have had today. It's humiliating for Zoe who kept crying and apologising.

Zoe is now on antibiotics and we hope that this is a urinary tract infection because urinary problems are unfortunately frequent with her treatment.

On our way

December 19, 2017

Two days of preparation and we are now waiting for our plane to Mexico City.

We are 6 days away from Christmas, hard to believe.  Long journeys ahead we cant wait to arrive.

Packing

December 19, 2017

Today it was time to start the packing for our return journey. Six weeks is a long time and there's a lot to do, especially with gifts and stuffed animals that we're bringing back. Thanks to you all friends from Mexico!

We have been seeing friends again this afternoon, not all unfortunately as time is against us.

 

Of course we are happy to go home but we will miss Mexico.

See you soon...

Full of Energy

December 18, 2017

Today we went to bed early as we had high fever (as expected following to our treatment on Friday) and not hungry... And guess who has just woken up -11pm- hungry, headache free and "full of beans"

Pancakes

December 18, 2017

On Thursday we had a lovely time with our friends who had driven all the way from Saltillo to come and say bye bye to us.

Zoé helped daddy make French crêpes for the occasion and they were a hit. Thank you for the kind thought and presents everyone! 

Awake

December 16, 2017

We're awake!!

No fever for now and we slept well. Without interruptions from nurses, or maybe we didn't hear anything so we were tired!! 

And we're hungry for goat cheese, but we'll have to wait because it's not on the breakfast menu!! 

More Scans

December 16, 2017

A little session with our David followed by a little makeup session with our super nurse Carolina and here we are now in our room.

Dad finally managed to see the doctors: no change in the tumour, no progression, and the activity would be reduced.

They asked us to do a pet scan before our next surgery on January 22: A 2-day scanner that will reveal exactly the level of activity of the tumour and / or show the presence or no tissue.

If we are happy and somewhat relieved, half of Zoe's face once again paralysed once last week, but also yesterday... even if it was a minute, see Zoe as it is completely unbearable, And one minute still seems like an eternity.

Thank you all for your prayers, your support messages, so necessary and so much appreciated!!

Treatment

December 15, 2017

Zoe's awake now. We're very upset because we have bad things, but we look good... we're hungry, that's a good sign! ❤️

Unlike usual, we won't be able to see the doctors between two surgeries, so we don't know anything about the results of today's MRI.

Twenty Six

December 14, 2017

Chamber session number 26 for Zoe today, and the last for this stay. Twenty six mornings six times per week... the slightest cold or any infection and we wouldn't be able to attend. 

Thirty treatments are normally recommended: we may be doing up to 4 meetings during our next visit to Monterrey in January 2018 (9th treatment scheduled on 22 January).

We will have our next MRI tomorrow morning on Friday, 15 December at 11 pm followed by our 8TH intra-arterial chemotherapy treatment.

Yet another opportunity to prolong the life of our little Zoe, both qualitatively and quantitatively... we hope so much.

Another intervention that has a cost, 13208.36 €, we are lucky that our treatments are now fully paid by the money collected from the auction for Zoe by Deborah and André Pierre Gignac.

We do not forget all the continuous efforts of our wonderful association and all our benevolent supporters in France, England and Mexico who have managed to fully fund our first 5 chemotherapy treatments. And 4 immunotherapies this summer, as well as all our flights (except 1, generously offered by David and Regina! ) and all our rents, and most of our medicines... we can never thank you all enough!! 💝

We will still need you and your positive thoughts and prayers for Zoe tomorrow... 🙏❤️

If everything goes well, we will leave Monterrey Tuesday 19 to arrive in London on Wednesday and leave for Chambéry on Thursday, we rest and spend some good Christmas holidays with family and friends...

Precious Time

December 13, 2017

Yesterday was a tough day emotionally. With the unexpected news of, Hadley,  one of our DIPG friends in Mexico passing away, I suppose found it difficult not to think too much about our situation. It’s just so much easier most of the time not to think and just get going with everything and carry on… pretending everything is normal.

I only know too well how precious every day with Zoé has become. That our time with our Princess should never be taken for granted. Once again, sweet Hadley reminds us of it today. He reminds us of the brutality of DIPG and the fragility of life.

We try to make every day special, and it has worked so far and we feel blessed in a way. And we certainly want more days, more memories, more life really.

On Sunday, very special Mexican people like Mariana Gutierrez, Cordelia Elizondo, Bonnie Elizondo, Dayana, Martha, Maria Constanza, and many other local families worked very hard to organise the perfect Christmas party for all of our DIPG kids and our families. A big party for our big DIPG extended family and all those Mexican families who have been there for us and helping us all here in every possible way they can.

It was a success. Whilst we were all entertained and spoilt for 3 hours, it obviously all went in a flash as there were a lot of people to see and talk to… But it was so lovely to see a smile on everyone’s faces with everyone looking so happy. It felt good.

There will never be enough thank yous and gratitude to everyone being there for us and our DIPG community!

Santa Claus

December 11, 2017

Only in Mexico.

Cold

December 09, 2017

A beautiful sun and yet a cold.

Night Lights

December 08, 2017

On Tuesday late afternoon we went to Luztopia with our favourite Mexican friends.

It was lovely to be able to go out "at night" as we get so tired in the evening we never do it nowadays.

It was very exciting in the car as we were sitting (Zoé really...) in between our favourite boys of the moment, those are Bari and Lucas.

It was lovely strolling through the illuminated Xmas decorations. It was beautiful.

It was so much fun that I even asked to walk a few times, which made everyone even more happier!

And a big thank you to Mariana for the tickets.

..

On Form

December 07, 2017

Zoe is particularly fit right now and has a good appetite. Long may it last.

Extra Special

December 05, 2017

Every day following a DIPG diagnosis becomes special but some days are extra special and today was one of them...

This afternoon we were given the opportunity to do a free photoshoot.

We had the perfect dress for the occasion, and early Xmas present from some lovely friends 

Altgough we joke about Zoé's hair most of the time, really we are not allowed to touch it. But she does like her hair to be straightened, like my mum has done many times in the past when we were in Chambéry. So instead of arguing and in order to avoid panic and tears, we took Zoé to another Mexican hair salon and she loved the idea of being pampered. Mummy mentioned she was offered a Coke last time so we made sure we took a Coke with us to avoid any disappointment.

Although she was very excited about our plans for the afternoon, Zoé got tired after a few shots, as expected. She can't smile on command anymore, it has to come naturally and heartily... It's like her face muscles are going numb, which is sadly part of DIPG's symptoms.

And yet she just looked adorable and perfect... And no doubt she was happy about everything and the good company...!! And we were too! ❤

Thank you everyone and their generosity. 

Dear Santa

December 01, 2017

Already prepared for his visit

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