News

Precious Times

March 20, 2019

Thank you Naomi House.

A Little Away Time

March 18, 2019

We have been dreading the word "Hospice" but today we left for a little holiday away at Naomi House.  

A beautiful day that we spent in this great house. An exemplary institution, a beautiful setting, top equipment adapted to the condition of our children, and an adorable medical staff and to the little care with Zoé and all of us. A magical day in fact.

Tonight, I miss the words as we have seen so much more than an hospice and that this first day has been very moving.

While the term was so scary to us parents, the place himself had nothing scary. Medicalised without really being in the eyes of Zoé, very special moments with the importance of spaces, decorations, atmospheres and activities of relaxation, the time dedicated to our children, these hand strokes to relieve us parents, and I Pass.

Again tonight, if i usually sleep in zoé's room, tonight I will be able to rest alone in one of the rooms intended for the rest of the parents upstairs, a real luxury for parents of sick children. Dad will stay with zoé. With a little luck, she will fall asleep quickly after this busy day and dad won't need to reposition her a dozen times and change her layers before she falls asleep.

Hair

March 14, 2019

February 5th was the last time that Zoe had her hair washed. So today with our great nurses it was arranged for Zoe to have a special hair wash.

 

Just a huge thank you to all the amazing NHS teams who support us and are listening and care for our Princess.

To The Moon and Back

March 09, 2019

We love you so so so so so so so so so so so so so so so so so so so so so so so so so so so so so so much Zoé.. ❤️

Visitors

March 07, 2019

Busy days. Always at the rhythm of Zoé. The visits of our professionals who remain many but especially very useful. Of course, the NHS cannot heal Zoe but bring comfort and provide for the "Well-being" of our princess,  Yesterday, we brought us a sheep skin to lay under her in her chair while this one finally turns out to be a little too stiff for Zoé. 👍

Today Zoé had the company of Sian who made her do, always at the rhythm of Zoé, a whole bunch of nice manual activities, thing we hadn't done for more than a month. Both had a lot of fun! 

You are my sunshine

March 04, 2019

No words needed today.

That smile. That strength. This little life.

March 02, 2019

Today. Lifting at 7, preparation of Zoé's medicines / food by the probe for 8 , cleaning of the probe, sterilisation, mattress storage, shower, washing machine, diaper change, arrival of the two colleagues of our oncologist, home delivery of the equivalent of 1 months of food and equipment necessary for Zoe's nasogastric probe, followed by the meeting with one of the specialists of the hospice. Also a little change of scenery for Zoe downstairs.

The colleagues of our oncologist confirmed me this morning that, after analysis of the MRI and Mexican scan of Zoé from last month, her tumour has grown. I also discovered that the tumour has spread in the brain, we didn't know this.While Sylvain was at work all day and I was going to find zoé from one minute to the other, I didn't ask for more details. What would it have served when I see Zoe's condition as well? 

We also had to check out the different medication prescribed for Zoé and the torment continued with an "advance care plan" to fill with these same specialists in oncology. These two adorable ladies of course, simply the circumstances almost impossible, inhuman. These pages I had from the hospital, that I wanted to fill but I hadn't watched yet. A lady to stay with Zoé and the other to help me complete the document. The "surprise", an extra shock by discovering it as we need to reflect on Zoe's wishes / our wishes of her living (Page 5), an action plan in the case or a change of the condition of Zoé,  Come and put her life in danger (Page 7), her / our wishes at the end of life (Page 9), which prevent in case of the death of the young patient (page 14), what to do in case of heart arrest (page 15), and put our "ideas" in written. I just didn't find the strength to answer these questions and I said I'll do it later alone and with Sylvain. These questions that no family should have to answer / complete. These pages that I will send one day to our politicians who are interested in 

wanting to get more money for paediatric research, to those who let suffer and die our children without wanting to find healing. 

That smile. That strength. This little life. Our life. We love you Zoe. ❤️

Home

February 28, 2019

After three weeks of hospital, Zoé had a very good night at her home.

Today we had a good day. Zoe can't do anything by herself if it's not looking at her tablet so dad installed a TV in the room and she was too happy because even we don't have any (and so much better! ) We did an activity with a spa session accompanied by Justin Bieber's songs. We took all our time with creams, manicure, pedicure, nail polish, hairstyle: if it smelled good it was necessarily with us.. ☺️ and zoé to try to humming with little screams from time to time at rhythm of the words. Of course inside I was sad, but also so happy because to see her do and hear her, she seemed happy and that was nice.

We receive a lot of calls and medical visits to help us organize and know our needs because it is true that after so much help in our hospital in Mexico and that of Southampton we meet from day to day only to have to manipulate / use the Pump for Zoe's gastric probe, administer medicines, change her layers, change her, change her side / position regularly, wash her on her bed: it's a full-time. During the night, I often check that she is comfortable and she doesn't need anything while she can't express herself or can't move alone.

Bed

February 26, 2019

Our day yesterday was so stressful that I fell asleep whilst writing and woke up this morning at 9 am. 

Yesterday Zoe had no moral and the only thing she could do was watch TV and is so bored.  It took me more than 20 minutes to understand that she wanted to do an activity. 20 minutes of questions by yes or by no. 20 minutes of mutual frustration while she couldn't understand us, and I don't understand my own daughter anymore. That feeling of relief to us both when I finally found what Zoe wanted. Again the feeling of frustration when Zoé realized she couldn't do anything.

Our oncologist visited and discussed painful questions . The painful question of the takeover that we have also had to address, especially that of CPR, and if we had special requests. None of us were able to answer it, because what to answer to the right one? We didn't know. These words had no meaning, unimaginable, and yet..

 

A hospital bed for Zoé will be delivered to us before our hospital outing tomorrow afternoon. If we first thought about setting up our dining room in room for zoé and so being able to have access to all important pieces while keeping an eye on zoé, we fear too much passage, too much noise while there is no doors. The Large bed will therefore finally be installed in its small room, on the floor, in calm. And we will have a system with a camera to be able to watch Zoe at all times.

Big bed obliges, it's with a heavy heart that I left Zoé  and the hospital last night to empty her room ready to receive the bed. A real heart ache knowing the reason, but also to have to move every toy without her permission while thinking about her reaction by finding her room changed.  A two hour task that was awful.

No doubt that having to sleep again in her room will also be a great shock for Zoé as she has slept with us since May 22, 2016. So, the size of the bed allowing it, it's me who will sleep with her.

This morning, we had an appointment at home with our occupational therapist to order a chair adapted to the condition of Zoé for the living room. And then back to the hospital, with the nutritionist and the speech therapist to make her taste a tiny amount of yogurt and observe Zoe's difficulties to swallow it.

Paws

February 25, 2019

Zoé is slowly recovering from her long trip and regaining a bit of energy.

Since Saturday Zoé has a new tube. It is smaller and on the side and much nicer and more practical.

Yesterday was a good day as not only did Zoé smile more but she also had proper laughters with the sound and everything. It felt incredibly good to hear her laugh again. 💖Special visits from good friends but also from Leo the therapy dog from the hospital, which was fun and certainly a unique experience. All being well, we shall stay in the hospital till Wednesday, the time needed for our local team to help us make the necessary adjustments at home.

Zoe made me understand she wanted me to do her hair, which i did straight away before she changed her mind as she normally doesn’t like it.Not long afterwards she also me for a bath in bed like in Mexico, which also left me dumbstruck as she likes it even less... we will make sure it happens tomorrow. To Zoé’s greatest pleasure, Daddy has taken Zoé for a little ride in the corridor to the playroom to choose dvds for our room. 

Let’s hope tomorrow will be just as good a day as today 💖

We arrived safely

February 23, 2019

I still have trouble realising that we have returned to our house, that we have succeeded such a journey, a real expedition, a miracle in itself really seeing the circumstances. The help of our Mexican doctor as well as that of the staff of Aeromexico Mexico and UK, thanks again to them. And then also this amazing strength that our little Princess has in spite of her young age and who always will be A REAL CHAMPION.

As a reminder, we came out of our Mexican hospital for the first time after being voluntarily bedridden two weeks to better recover, and to go directly to Monterrey airport. A 22-hour trip, waiting, this crowd while our two planes were complete, these seats not necessarily adapted to our condition, our comfort zone to administer medicines and food that was no longer, the many eyes heavy, All this new attention necessary almost constantly.

I have a great knowledge that our Southampton team will not be able to save our Princess and that the days to come will not be easy, I feel such a relief as a Mum to know Zoe is surrounded by them, Framed, in the hands of our oncologists while she requires a lot of attention and care.

Once again, I have to remember that as eager and almost desperate that we are to want to save Zoé, we remain on the " how much " we can " do " and more than ever let's not forget the importance of her well being and comfort above all and the fact that she suffers as little as possible.

We regret nothing about what we have done for Zoé so far, these difficult choices we have always made with our heart. Today, we will once again adapt to its new rhythm. Today, the fight continues even if for now we are going to " follow " rather than the " precede ".

Yesterday was dad's birthday but also the 33th month in the fight of our fighter.. tomorrow will be a new day, 

Time For Thank Yous

February 21, 2019

All be well we fly back to the UK. The organisation as been huge but we are thank you for so much help and support. Please read more details here.

Come On Little Champion

February 19, 2019

And tonight she even said the word "yes". as a reminder, zoé doesn't speak anymore then this little yes in addition to our other little progress of the day is all the more special as he comes to reboost our hopes... Come on champion, you can do it! ❤️

Out Of Intensive Care

January 16, 2020

At 16 pm today we left the intensive care to move to a normal room. Yay!

Not only is our state considered stable but in addition to communicating with the eyes, her face seems less frozen, and now Zoé nods. More than ever, she wants to get out of the hospital and go back to Cordelia, and she cries, strong, and with almost tears this time. She's trying a lot to talk even if she's almost impossible to understand.

And she's hungry, which is a good sign! We ended up understanding that she asked us for something to eat, we didn't get back: so i listed everything she loves: strong cheese that stinks, garlic, olives, salmon, raw ham, sausages, banana, etc . Until I propose shrimp and there her face lit up and and she made yes from the head! She will of course have to settle for her poor proteins through her tube, which will have earned us additional tears. " it's hard life! " as she would have told us.. It's true that it's not just life.

So yes yes these are small improvements but real little happiness in front of this monster of DIPG. Hoping that she always recovers more with time, that tomorrow is still showing more improvement. If only her courage and patience could be rewarded.. 🙏🏻💖.

Intensive Care

February 10, 2019

We're still in intensive care.

This afternoon, while the nurse was trying to administer her medicine through her mouth, Zoe choked again and required an oxygen mask for half an hour. Tonight, she seems to be getting better, but they are worried and need to see another 24 hours for Zoe to show some signs that she can swallow.

And yet, doctors find Zoe overall better today while the numbers on our screens are good, her pupils dilated, her fever fell, etc. And good. For us her parents, the "improvement" is much less obvious we who know her so well and it breaks our heart to see her like that: conscious but so weak, without being able to speak, communicate, or even smile. We miss our princess. Tonight, we will sleep next to each other even if not as close as i wish. Always one day at a time praying for Zoe.

ER

February 09, 2019

E.R. we were feared,  but we finally had to come at the end of the afternoon while Zoe was getting more and weaker over the hours to the point of choking just by swallowing her medication by the syringe and we see her Oxygen rate down to 85 %. So it was around 5pm yesterday that we made the decision to go there, a wise decision while Zoe showed signs of inflammation of the tumour following treatment and some signs of dehydration.

As we expected, Zoe's special condition required the installation of a PICC line and therefore similar to the one on Tuesday. Another anesthesia, so another surgery, even minor. This time the intervention went well and  in the leg rather than on the arm or elsewhere, thus leaving better veins accessible in case of need.

We'll stay in intensive care tonight and certainly at least tomorrow, until Zoe's state gets better. Intensive Care, normal room, house, 3 days, 5 days, 7 days, no one knows, everything will depend on our valiant little princess. We just hope that she will succeed in resuming forces. We hope for her, that she can eat, talk, find her joy to live. For us, we'd find her and then even if it's less important, for our wallet too, while the intensive care service costs 100000 Mxn pesos or 4623.93 € a day and we already paid them when we arrived..

We believe in the importance of this extra care to fix Zoe after this almost last chance treatment. While Zoe was well looked after, we were able to fall asleep a little bit more serene I think even if fear in the belly is obviously not leaving us.

This morning, they have already removed the oxygen mask from Zoe. No fever. She's got her eyes open and they're not red anymore. Her heart rate and pressure look good. She's calm, she's resting.

. We wait, we have time. Take your time darling, we're here with you, behind you. We love you. Other news when we see the doctor and the internet will allow me.

 🙏💖

Procedure completed

February 06, 2019

Zoe came out of the block and back to her room. In time of rest and recovery now... thank you for your prayers and support!!! ❤️

MRI Results

February 06, 2019

As we feared, Zoe's tumor has grown well. Fortunately, if i may say, the tumor remains localized and its spine is not affected. So we'll continue with our treatment at noon tomorrow. Of course, we're sad, but not defeated. And always proud of our Princess.

 

So we continue our fight. In the hospital while we had thought of everything, nothing was easy and above all automatically. A lack of communication from a to z obvious and worrying. Fortunately, all is finally well and Zoe is fine, and this day is coming to an end. Cordelia who will be gone with us this morning and will have left the hospital at 21 pm and whose support (and Spanish! ) will have been very valuable and appreciated!

And  to our Zozo who has now shown extraordinary patience and courage

A big thank you to all of you who sent us private messages or commented on posts, to all of you who support us,

Bath For A Princess

February 03, 2019

Today was a bath for our princess, which is always an adventure. While before we used a little garden chair here in Mexico, this morning it was a small tub and it was much more practical. A little music and we were happy, and we smell good after... 😍 

Then our super hairdresser Naomi made us pretty curls and we loved it. While I'm looking for the smiles - smiles that are getting a little rarer, 

Please reload