News

Some Normality

January 31, 2019

The last few days have been quite traumatic for all of us. It was lovely to laugh today and take Cordelia's family dog for a walk. 

Injection

January 30, 2019

We already knew, but she's a pretty brave little girl, our little Zoe, and patient

By experience, we knew that finding a vein at Zoe wouldn't be easy, A first attempt for intravenous missed, and then a second by hand 30 minutes later, missed too, finally a third, successful, thank you ! Thanks to our very sweet and very quiet nurses.

Zoe will have been afraid of it, but will not have fought or cried. I tell you often but we're so proud of you Princess . 

Tired

January 28, 2019

Unfortunately, Zoe is still very tired and her deterioration is worrying.

While our doctors in Southampton had prescribed us 3 extra days of steroids the time of the trip, always in order to optimize Zoe's state and its travel conditions, we unfortunately have to recognize that once the steroids are over, Zoe is in a great state of fatigue and weakness. If since Christmas she no longer uses her right hand, it is now her right arm that has become almost completely stiff and paralyzed. And for a few days, her right leg that she can hardly bend.


Wearing it is like wearing a goat log as they say, when she loves it so much. But still, sitting in her wheelchair becomes complicated while she's completely stiff. In the bed, a little caress on my arm, and that's the sign that we need to help her return. On the couch, the finger pointing up the sign that it must be traced back as it falls. Difficulties to talk too, and therefore to hear it, while according to the moment of the day, it may be a single word that it will whisper and we will have to understand, often after a few attempts. And we drool a lot, especially when we're focused. We spend our time sitting on the couch watching tv or playing our tablet. We don't play much more, not really surprising when we can't do anything. And when we move alone, it's on four legs, and that's just impossible for me to watch.

 

One step at a time. One day at a time, always.

Here in Monterrey, waiting for our treatment, we have the chance to be well surrounded and pampered by our wonderful friends Cordelia and her family who wanted to welcome us. All together, we're still laughing, we still love playing with flour when we look at others making cakes, and we still love the little cousins of our Mexican family, so "cute".

But for how long? Every day, every waking up, every moment less well for Zoe, every little cough at the time of eating or drinking and it's fear that goes up, the heart that gets packed. How many times a day I say " it's okay Zoe?"... and how many times I wonder...

Back to Mexico

January 25, 2019

We are on our way.

Questions

January 17, 2019

 We had an appointment in Southampton today. Questions and more questions.

 

As we explained to our medical team we were informed about the necessary medicines and quantities, the precautions to be taken for flight, pre-treatment and treatment in itself with always this importance of staying hydrated, we have seen our Team very listening and understanding. All these decisions that we parents have to take while we are not doctors are complex, they are worrying. Almost impossible, however, they are necessary, and any support is so appreciated. Whether our doctors believe or not in these Mexican treatments, we will not move forward. Still, between the day before yesterday with Great Ormond Street hospital in London and today with Southampton, we can say that we felt our distress heard, that we felt somewhat supported, and so a great booster For morale.

What we're sure of is that we won't give up, ever. For almost three years, we have lived in fear with only love and hope to save us from madness, that would be to ask us the impossible to give up now. We'll fight to the end for Zoe. To honor her courage, her strength, her joy to live despite the circumstances. To honor her fight, to her journey. We love you so much

More Strength

January 15, 2019

Steroids seem to work while this afternoon we were much better with full energy. We wanted to cook, play, write, do a stained glass activity with stickers that Zoe will have glued on her own, and then these beautiful drawings of the right hand please while with fatigue we do all with her left hand. We will also have moved from one couch to another, so it is not much but without force we did not want to do anything anymore and let alone walk or even stand up. And then tonight we washed our teeth all by ourselves, like before Christmas, without me insisting.
Sure, when our kids get better, we're better too. Hope it lasts... 🙏💖

In the meantime, we still consider it possible to return to Mexico and I would like to check with our medical teams in London, Southampton and Mexico on the procedures to be followed in relation to the medicines required for Zoe.

Tired

January 11, 2019

We started steroids on Wednesday.

Zoe was tired on Wednesday, and even more tired on Thursday Thursday, I had to change her several times while she was focused on her computer and drooling a lot (if too much tablet and tv tired your cuties, that's what makes us less tired when we don't have enough Strength to do something else right now...). Today we were less tired even if always so angry / frustrated and impatient. We sleep early at night with Zoe getting tired fast and at 7pm we were already in bed.

Last night, we finally received the report of our visit of 13 December to our London hospital Great Ormond Street hospital. I immediately sent it to our Mexican doctors with the report of our last Tuesday visit to Southampton to read them and, depending on the current state of Zoe, whether or not they would recommend another treatment very soon. We wait for their return...

" I hope it gets better tomorrow..."
" yes, me too..." 🙏💖

Southampton Meeting

January 08, 2019

There are days we cursed, life too when it can be so cruel and unfair.

We had our appointment at Southampton today. Please read full update here

Father Christmas

December 25, 2018

We hope you all have a good Christmas. As we expected, Santa will have spoiled Zoe " Santa Claus, he will spoil me because I always take all my medicine and I am very brave."

The day will have been good and certainly better than last year where Zoe had her facial paralysis since the day before, but Zoe remained extremely tired physically today, to the point of not being able to really enjoy her toys or even just talk or move. It gets complicated to get up or move on your own. And yet, she's been wise all day without ever complaining. Even in her little world, she stayed happy. Nice gifts, more or less original and bulky. Thank you Santa! And thank you for this new Christmas always so special, together, with our Zoe! ❤️️

A particular thought to all the incomplete or in-fighting families we know, families families or other diseases. #Toussolidaires
 

Happy Christmas

December 24, 2018

We wish you all a happy Christmas Eve and we all kiss you all💖

Back In France

December 18, 2018

So much cuteness in such a little body! ❤️

Great Ormond Street

December 13, 2018

 

As always, we were apprehensive  but our appointment today went well. We have finally met not 1 SPECIALIST BUT 5, including the neurosurgeon. Zoe who will be staying with one of their specialized nurses who are busy doing activities allowing us to express ourselves and better listen to specialists. Doctors who knew our file and were prepared. We will of course have mentioned Zoe's journey, the evolution of the disease, our feeling about the benefits of Mexico's treatment of Zoe's state of health and this artery blockage, which according to these doctors could be well linked to radiotherapy.

Our facial paralysis from December 2017-March 2018 linked to our tumor. Our 2 recent facial paralysis rather related to our artery because very short (less than one minute each).

A possibility of operation according to our neurosurgeon, nevertheless not recommended at the moment, while Zoe is generally doing well without showing too many symptoms and that such an operation involves risks and would commit her vital prognosis... one step at a time. One day after the other...
 

Today we found ourselves in neutral ground and it felt good. No miracle, but some solutions though. This is our 30 months post-diagnosis that almost holds the miracle... thank you life! The road is still long when we don't know where we're going. I still believe that we live today the "best of the worst" with Zoe. That the more we get away from may 2016 and the more things will get complicated, but as long as there's life there's hope, right? 💖

London

December 15, 2018

So tomorrow we'll go to London for our 11-Hour meeting at Great Ormond Street. What are we going to say, we don't know. What are they going to do or even there is something to do, we ask. What are we going to do, we don't know any more.

As usual, we'll need you. Your thoughts, your prayers, your support, etc. For Zoe, but also for us who find us somewhat overwhelmed by the complexity of our evils.

Zoe, she continues to be happy and smile at life. She'll have laughed a lot today. As for tomorrow, she knows we're going to see doctors and ask what they're gonna say... and as for Mexico, she's asking to prepare her bag of rabbits thinking we're going to leave for a few days... Our "normality" for 16 months is not so long ago...

Present From Mexico

December 04, 2018

Our special guest from Mexico is here!


❤️️ Cordelia ❤️️

Waiting

December 03, 2018

Tomorrow we will have a very special visitor staying with us until Friday 🤔. We will post a picture when we are reunited 😍. We can't wait as we can really do with some company at the moment...🙏💖

In the meantime, night night everyone and thank you very much to all of you for your very precious support! ❤️️

Please reload