News

Lost

November 22, 2018

" We don't know... but we're worried." that's unfortunately what we were told this afternoon.

Zoe's case is a "Complex case".

The tests have confirmed the gravity of the situation with  our artery that is still extremely narrow in one place, exposing Zoe to the risk of stroke.

We listed together the possible reasons for this problem without pointing the finger at the person (Radiotherapy, chickenpox, chemo, cholesterol, etc).

And now? Two possibilities: Medical (medicine) and surgical.

Medical side, the worst should be avoided with the anti-platelet, but for how long? While too many of these medicines and if used in the long term, they will create bleeding at the tumor level.


Our Southampton team is now in contact with the cerebrovascular team of Great Ormond Street in London for a third opinion (the second being with a British Professor In Neurology). Their meeting going on Wednesday, hopefully we'll know more at the end of next week or the week after.

The decision to return to Mexico for another treatment is therefore ours. On the one hand, this artery problem, on the other hand, our tumor, which is likely to wake up because either way, we're stuck. But deep down, I think we know very well that we have to take into account the opinion of our English doctors and that traveling Zoe so far under these conditions would not be reasonable. We don't like to wait here, but we need to make good sense for Zoe. And Christmas coming in big steps and the more time passes and the more the prospect that Zoe benefits from a 16th treatment goes away...

There was only one test on Monday to observe the arteries and blood vessels and not an extra MRI as we thought. So we didn't learn anything about tumour. We don't worry until Zoe shows new symptoms.

Tonight we find ourselves lost...

Update

November 22, 2018

This afternoon at 3 pm we should have results and some answers from our arm of Monday.

This long-awaited information that should enlighten our doctors on the state of our artery, the origin of our problem, help them determine an action plan, and help us plan our next treatment in Mexico. That's at least what we hope for our meeting. We are nevertheless beginning to know the complexity of the brain and fear to hear again " we do not know... but we are worried."

With This MRI we should also know more about the condition of our tumor, 7 weeks since our last MRI and while our warrior princess reaches 30 months post-diagnosis today!

Having to fight DPIG was not enough, it was necessary for an equally fatal artery problem to be involved. Hard to believe by looking at this photo of Zoe taken yesterday, and yet Zoe's life remains threatened, and we terrified.

Today again, if you could think of us, pray for us while we hope the best of the worst really... from the bottom of the heart, thank you 🙏💖
 

Pyjama Day

November 20, 2018

Today was pajama day, for everyone including Dad.

We took advantage of being home all three to make our Christmas tree that we always do in advance while we normally go home for the holidays, and we can enjoy to the maximum. Accompanied by Disney Carols / music, it was sad but it's still part of Christmas Magic...

 

Tomorrow, if we're okay, it'll be school at home...

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Tests

December 19, 2018

That's it, we're on our way back!!

We'll see our oncologists on Thursday hoping to have some answers

In the meantime, thank you all for all your messages of support and love for our Zozo! 💝

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School Photo

November 16, 2018

It's arrived

School

November 12, 2018

We're not going to the hospital today but at school, for Zoe's greatest pleasure and ours! Thank you life! ❤️

Letter To Santa

November 12, 2018

At work for two hours, and surprises in the choice of gifts! Metal detector......

Overwhelmed and Lost

November 09, 2018

Zoe's good enough, but we know it's only in appearance and we don't know when we're going back to Mexico.
There are stages in the disease where you feel overwhelmed, lost, and that is still the case today..

A week now lost whilst we await further information . English side but also Mexican with these treatments we need pending, as we reach the 7 weeks without treatment on November 21, day of our next treatment initially planned, and when we should have left this Friday.

Zoe is asking me when we're going leave to show Cordelia the little suitcase we found, or introduce her little dog to her game console.

But we're stuck. Stuck because I admit I'm afraid to travel alone with Zoe with that risk of stroke threatening. Fear of the worst. Also stuck because Zoe is on aspirin and platelet on a daily basis, which are incompatible with our Mexican treatment, and that we cannot take any additional risk without medical advice.

It is very difficult for me to describe what state we are in. Anxiety, frustration, anger, incomprehension, sadness, fatigue, impatience, our impotence, faced with the gravity of the situation and all that inconsistency around, everywhere. If love could save you Zoe, you'd be out of danger for a long time, princess, and you'd live your life as a child and we'd be happy, we'd be really happy.

Last night in bed, Zoe asked me to help her turn her on one side and while I was doing it she added " Why when I was little I could do it all by myself?" her innocent reflection obviously has me pained, and for the first time, I didn't want to lie to her and answered her almost naturally that it was because she was " sick "... and she answered me " Ah ok...", like some kind of acceptance, Resignation. What does she know? What does she think?

School Hopefully

November 09, 2018

Our pretty doll yesterday. ❤️

This morning, if everything goes well, it'll be school at home.

We are waiting for news from our British doctors for, we hope, an action plan... 🙏

 

Thank you so much for your continued donations it's really generous and it touches us a lot.

 

Thank you for your support! 💝

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Beads of Courage

November 04, 2018

A pretty specific bead and a wide colour code for every medical inflicted and every important step. 

Our necklace is now up to date this Sunday, November 4 It has 594 beads... and not less than 6,60 m long..., since its first meeting on Monday, 4 April 2016 (diagnosis on 23 may 2016). 943 days... a bad for a good, that means she always fights... that she's still there... ❤️🙏

"Every pearl tells a story of strength, honour & hope". the story of our little Zoe...

Keep Us In Your Thoughts

November 02, 2018

A very complex situation and all the more difficult to accept when we know that the tumour is stable (which is almost the miracle for DIPG) but that there is now this new artery problem. The artery that can break at any time and cause paralysis of all or half of the body or death. We can barely write that word.

Our British doctors are always trying to understand the reason for this narrowing since April and await answers from our Mexican doctors before they can act. We are going to have a MRA next week (similar to an MRI but more precise and more advanced while it would include the upper part of the body) and thus identify other anomalies.

As our doctors have explained to us, they can now only control the problem with the medicines they have given us. A "control" however in the short term with these same medicines that can cause other problems in direct connection with our tumor. Serious problems too.

So we are facing a terrible dilemma between two countries where we are being treated. With these extremely delicate decisions that we must take for Zoe and which should not be imposed on us, namely, travel to fight the tumor or stay to monitor our artery.

 

A choice we do not wish to take.
 

Prayers

November 01, 2018

Today,we have an oncologist and vascular neurologist appointment. With their team, they had to study together the images of our 3 October scan. We don't know any more.  We are knots in our stomach... again, we will need your prayers and positive vibes in these difficult times. 🙏 in advance thank you all! ❤️️..

Halloween Thoughts

October 31, 2018

Halloween and his deadly decorations are scary, it's funny. Here, our radiotherapy mask recycled and decorated for the event.

Pediatric Cancer and brain tumors are deadly, and this fear is real for our family.

Behind every mask, there's a face. Behind every face, a story, the story of our 7-Year-old girl.

Come and see her face on our page, come and discover the pages of her story.
Come and follow her journey,
Come and share his fight as well as ours as to the awareness of DIPG and more research in pediatric cancers.

Because Halloween Fantasy is one day a year, and our reality is every day.
 

Pink

October 30, 2018

❤️ October Rose. In Pink I pose! ❤️

Twenty Nine

October 21, 2018

Today was visiting our physiotherapists and our speech therapist who had a good time all 4 together and found Zoe in relatively good shape... 👍

Today also marks our 29th month post-diagnosis. If again this is great in the world of of, it remains too little for a child who should have all the life ahead of the,. And too little for us too parents, family, friends, etc. To life. To our children. ❤️

Hospital

October 17, 2018

This morning, the hospital called  and ask me to come to the hospital earlier, that our oncologist won't be here, but someone else will be there. I think it's to make Zoe look after yesterday's incident, and whatever the oncologist is, it's important.

Except that the person in question was not an oncologist but our vascular neurologist and that if zoe was able to stay most of the time with grandma and auntie, dad wasn't there, and it was alone that I found myself with this specialist " then tell me everything you've done..."
And I started saying we started our intra-arterial chemo in June 2017 and...
And he " you started what?" he didn't know anything... I had to tell him everything, explain in detail from the beginning, dates of radiotherapy sessions, number of sessions, number of treatments in Mexico, conditions / description. A real interrogation, which lasted almost 2 h30... not once I cried. Not that I didn't want to, far from there, but I didn't have time. I had to keep the course and answer even if it was frankly unbearable and our conversation totally surreal for any parent.

It is now up to our specialist to analyze the images of our xray from May and October and to check some suggestions made by our Mexican doctor specialist. Hoping for solutions...

If we have already been warned that we have to wait a few weeks before we receive a written report from our consultation today, we obviously hope to have news well before that...

If all goes well, we'll go back to Mexico on November 12th, but all of this is still far away... one day after the other...

Our Warrior

October 17, 2018

How to tell you, if our day started well with school and this super nice teacher for Zoe (both worked nonstop this morning for an hour and a half and Zoe was thrilled), while we were going to lunch and Zoe was looking for something head down in her trunk, a part of her face froze, just like last winter and it shocked everyone to see her like that for a few seconds. Of course, we try to reassure ourselves that it must be the fatigue of concentration, the accumulated fatigue due to the time lag, the head down too long, hunger, etc. But we also remain aware of the risk of stroke for Zoe that famous poorly irrigated vein... we alerted our oncologist and hope more than ever that RV with the one last and a vascular neurologist...

It's hard to calm down the rhythm with Zoe that stays in shape overall (she walks at her pace, but she's moving on) and doesn't want to sit there without doing anything or watching She's already limited in everything, hard to tell her no when she wants to be active, try, explore, join us, etc. On the contrary, we can only encourage our little warrior. If I look at her regularly, I didn't leave her eyes this afternoon to make sure everything was okay with the " it's okay zoe?" who go with and Zoe " stop worrying!" because I am Recalls that too well when that same face had already frozen on December 24th for three months... this non-stop envy I had to caress her face, massage her to unlock it and Zoe who didn't seem to To report nothing... details we don't forget.

Tomorrow afternoon, we'll go to our hospital for our quarter visit to the ophthalmologist. Hoping everything will be fine.. 🙏❤️

PS. This photo souvenir of our princess of October 2016, in schoolgirl like today again 💝

Home School

October 15, 2018

From this week and due to two mornings a week, on Wednesday and Friday from 10 am to 11 pm, Zoe will receive a teacher at home, for Zoe's greatest joy but also ours!

If it seems that we have now recovered from our time lag (that since yesterday...) and we could go back to school the other mornings, it seems unfortunately compromised that Zoe will receive his flu vaccine only on 3 November and that the one remains very dangerous to send it without, to Zoe's great disappointment... we will therefore try to appreciate these two special mornings face to face with our teacher at home! 💝

Pack the suitcases... place to apprenticeship! ❤️

10 Days Already

October 07, 2018

Already 10 days we are in Mexico with our family in the heart and it will be time to leave tomorrow. As usual, we will have been pampered and busy, even if always at our pace. It's always hard to go back because our friends here are going to miss us. We would have liked to see the others but it was too short, next time we hope.

Zoe is slowly recovering from her treatment, she is tired and is therefore often a little stressed and so upset. 

Tomorrow we'll take the flight from Monterrey to Mexico city and then our correspondence to London.

Sleepy

October 03, 2018

We're back at Cordelia's. Zoe's very tired, she's been sleeping since she got out... she hasn't eaten since yesterday and I hope she's hungry when she wakes up. ❤️.

Updates

October 05, 2018

Our angiogram from yesterday confirmed an additional reduction of irrigation in this same vein of Zoe 😔, even though still it was apparently well irrigated around because Zoe is a child (our doctor used a word I of course forgot ... too much stress).

Not much to do unfortunately always according to our doctor expert. Zoe showing no symptoms at the moment, a stunt or angioplasty involves risks, including creating more symptoms / risks and possible complications.

We will continue to take aspirin even if we are not sure of its effectiveness, and we will therefore have to test the resistance of Zoe to this medicine in England. Where and how, I don't know yet, but we'll find out. We will also have to consult a vascular neurosurgeon in England and focus on our vascular problem, perhaps an autoimmune autoimmune disease in addition to our gitc, as if our tumor was not enough for our pain. 😔
 

MRI

October 02, 2018

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This picture taken minutes after Zoe woke up from her MRI.To see her sitting and also happy, who would doubt the harm she is suffering?

And then tonight, we saw the doctors and there is  good and bad news.
The good one is that Zoe's tumor is stable. A small miracle.


The bad thing is that the problem with a blockage to a vein still persists... and despite the aspirin she takes regularly this doesn't appear to have made a difference. It's very worrying... none of the other children treated have this.  Just like in May, our doctors will require a further investigation before any treatment to learn more.

Tonight, my head is full and my heart is big. Fortunately, my friend Cordelia was with me this morning at the MRI, tonight at the interview, and she will be there tomorrow to keep us company and support us. Dad was sleeping on the way out of our interview with the doctors (2 a.m. English hour), he'll discover the news when he wakes up. What a life, my God, what a life... and our little Zoe who is so happy right now!

We will still need your thoughts and prayers for Zoe more than ever. 🙏

Thank you all for your support messages again today. 💖

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