News

Joyeux Anniversaire Petite Princesse

May 26, 2019

A huge thank you to all for your messages, posts, comments, we have received hundreds of good birthday wishes from all over the world for the 8 years of our little princess .

Our room was filled with balloons and lovely treats from friends and family.We have been spoiled. Thank you all and everyone at Naomi House .

Naomi house made us a cake that we all shared during a little party with all the other children and their caregivers, it was nice from them once again.

Zoé was still asleep for most of the time today but she also opened her eyes several times, and communicated by blinking of the eyes and it's already good that our champion reacted. As you may doubt, if everything was wonderfully well thought for zoé and her condition, today will remain a very special day at all levels and particularly moving. 💖

Birthday Treats

May 22, 2019

Yesterday our Doctor kindly mentioned Zoe’s birthday on May 27th and suggested that instead of planning a whole day full of festivities we shall plan one festivity a day over 5 days with the play team and carers planning everything according to Zoe’s tastes and what she would have liked to have or do. Wow, we certainly did not expect that, it is just incredible we will not have to worry about organising anything at such a difficult time. 
And today they organised a " Pass the Parcel " with the other kids and carers and it was so nice and so sweet. 


A big thank you to Naomi House & Jacks Place again and their amazing little fairies who always work their magic for our Princess. 💕

Little Teddy Bear...

May 21, 2019

More morphine was given to Zoe last night as her breathing was jerky and she was almost certainly in pain.

If I hoped to reassure Zoé and me by getting closer to her, I had not imagined this psychological torture that it is to have to hear the heart of her little girl beat as fast and this one fight to breathe. Every time zoé's breathing stopped, it's my heart that stopped too. 

This morning, his intestines still don't work and his breathing is always irregular. We are sure to have the lack of plan even if we are unfortunately almost accustomed to it. And this new type of waiting we can never get used to.

Today Zoe seems awake and more react. Her eyes always hinder her but she hears us well and always blink when we talk to her and we tell her how much we love her, how much everyone loves him. This morning, I offered her to tell her the story of the little teddy bear who was going to the forest to look for honey, she loved this story. She blinked her eyes, it made her happy. Then, I talked to her about this beautiful place that is paradise or find all the people dear to our heart that we do not see anymore, this great place where we can play, run, dress up, eat shrimp, drink from Coke, smile, laugh, talk, scream, in all freedom, live her life as a child, without ever having to worry, or suffer. She blinked again.

Thank you all for your thoughts and prayers for Zoé and our family 💖

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One day at a time

May 17, 2019

Yesterday Zoe was fine -considering her condition of course- and we were even able to change her feed slightly and increase the speed rate from 45ml an hour to 50ml an hour, wow I know. Anything that makes Zoe comfortable really.

 

Today was a different day.........

Night Nurse

May 11, 2019

Tonight, we have a night nurse for the first time. We have to admit that they are super well organized and care for Zoé and our family, hats off the NHS 👍 . Our nurse will stay alongside Zoé from 22 pm tonight until 8 pm tomorrow morning and she will come wake up if Zoe is stressing out while she still doesn't know her. I will find my bed in which I have slept 1 TO 2 times only since January 23rd, before we leave for Mexico, it's going to be weird.

 

Good night princess, everyone loves you. 💕

Home At Last

January 10, 2020

Back home . A good day with Zoé.

It's also the nights that become difficult while Zoé just fell asleep (23 p.m.) despite my presence by his side, with moans as soon as I was missing because lying, even less than a meter of his bed . I think we're not going to be able to escape the nurses at night.. 😔

Mexican Visitor

May 06, 2019

Zozo finally have tolerated his energy drink of the night by reaching even 30 ml per hour, it's always that won. Always this same drink today as our milk always has trouble passing by. Belly aches, and always our pesky headaches that don't leave despite our painkillers including two small doses of morphine today. And the side effects of our steroids that are already manifested while Zoé has become particularly bumpy and uncomfortable in the day and totally irritable with our moans back tonight before falling asleep. 😔

Little more of the day being obviously the arrival of Cordelia this morning and the smile-even little it counts-from Zoé by seeing her. And then of course this nap that would have done so much to Zoé but who will have enjoyed others..💕

Bank Holiday

May 02, 2019

We remain at Naomi house while Zoé was still sick this morning, even if a little more alert. Time to adjust quantity and speed of our meals via our probe as well as our medicines. Headaches that we seem to have regularly these last few days. The weekend approaching and Monday being a public holiday here in England it may be better to stay so as we receive time and good care. 💕

Baptism

April 30, 2019

If last night was good, it didn't start well, and the rest of the day of snoozing for Zoé. Always with headaches (not violent but nevertheless certainly awkward).

Zoé was particularly weak today until about 3 pm. We next to her to look at her and try to understand her, always so powerless, and so unhappy in the face of all these suffering inflicted on / for Zoé, all this injustice and cruelty, it's just inexplicable.

It will certainly surprise you but yesterday we meet the priest based in Naomi house and today we agree to have Zoé baptised. And why not, I want to tell you, if it can appease us a little bit of knowing that Zoé can be protected at least spiritually.

Today is also the 1st of may and the month of may as the month of awareness of brain cancer. With the being considered one of the worst pediatric cancers existing, help us get to know this incurable tumor around you all month of May and every other day and go grey in May! For Zoé and all the other children who fight, fought and will have to fight lack of funds, lack of research and inevitably lack of healing.

If Zoe is better tomorrow, we should go home in the afternoon. Otherwise, we will have to extend our stay the time our new medicines / dosages make effect.. come on doll, we believe in you you know, stay strong champion, we need you! ❤️

Water

April 30, 2019

We are still at Naomi House and we have to recognize that our stay doesn't really go as we imagined. A month since we've been there and a month already since the condition of Zoé is deteriorating.

Monday, the taxi ride so far will have been so stressful and exhausting while Zoe will never find the right position in her armchair  and therefore moaned all along the poor, and this despite our two stops On the way and to the kindness and patience of our driver.

As soon as we arrive, to relax Zoe and to make her happy, our ladies at Naomi house organised us directly the pool. Her little muscles of the face tiring, Zoé has more and more trouble expressing her joy, but for us who know her well, no doubt she was happy, and so are we. The hopes that we parents had from the pool that had done us so much the previous times.. disappeared in a second the time our physiotherapist and we realised that she was so heavy with little mobility. At all. I immediately realized it behind my goal, just as I saw dad's reaction, it made us so much pain and her little body that should be so light in the water and still remains so heavy.

Then also if yesterday's night went well, our first night of Monday was also difficult and an additional source of stress for all. Impossible to fall asleep, restless, irritated and that despite our medicine, and then also a headache (new symptom and not good sign), and only a dose of our magic medicine that will have worked that night.
Zoe will finally have managed to fall asleep, so good even that she slept until 15 pm yesterday (intermittently but without great reaction) following the combined effects of our two powerful medicines (Fortunately, our tube will have allowed us to feed), and our headache always present.

Once Zoe woke up, our little Princess wanted to do an activity, and before dinner she took a bath; a moment of happiness that will certainly contributed to soothe her and sleep

And today, we'll see.. because every day is different. And always one day at a time.. 🙏🏻💖

Looking Up

April 27, 2019

Many of you are amazed by the lack of news recently and we thank you.

If Zoe seems less irritable as we have decreased steroids in the last few days, also less agitated thanks to her medicine, Zoé remains extremely tired and any movement becomes harder, whether it's to hold the head, turn it or do yes or no. Communication also becomes more difficult while our questions often remain unanswered but we are getting there. Zoe is still laughing once in a while which is so lovely.

Zoé's left eye remains half closed.. 

What does Zoe know about her condition? What does she understand? I often ask her by looking at her, watching her, and remain silent while I'm afraid to say too much with my questions.. but last night, when I was filming her, Zoé was deliberately watching and checking the ceiling. I asked her if she was looking for / wanted something, . Then after a while, I asked if she was afraid. Are You afraid? " from the dark? " no. " from a monster? " no. " from a bad dream? " no. And there, bearly to ask the question, " to go? " and Zoe to nod. " are you afraid to go to heaven? " Ditto. The fact that she didn't hesitate tied my stomach at one time and yet I knew it was the opportunity to have / be able to talk to reassure her. And everything goes so fast in these situations where we realise that we're not really prepared but we're launching " don't be afraid.., it's a magical place.., there will be grandma mono.. and A lot of people you know.., you'll see.. " in my head, I thought of our other grandmas side dad but I didn't want zoé to believe that there are only elderly people in heaven. I also almost said our Annabelle and Kaleigh but I was afraid to scare him. Zoe made me a big smile to the word "Magic", it made me all funny and it had to see myself on my face because she started staring at me looking at my eyes one after another, like To see if I was sad and cried. Oh I wanted it so much, but there it's like I knew, I felt I didn't have the right and instead, I made her a big smile by stroking her hair to reassure her. I asked him if it was better and Zoe to nod again. I was both shaken and relieved of a big weight. 

Tomorrow afternoon Monday and until Thursday morning, we will return to Naomi house. We hope to be able to enjoy the pool, after which Zoe will certainly want to go home. In any case, we will be well well looked after, that's certain.

Let's just pray that the state of Zoé stabilises as long as possible.. ❤️

Starry Lights

April 24, 2019

Since the time I wanted little soothing lights for Zoé, this was this morning and Mum perched with stepladder and hammer.

This afternoon, it was a bath for Zoe with dad in the bathtub, surrounded by our super nurses. The water does a lot of good to zoé and daddy's presence tends to soothe her too.

In the evening, we are projecting small stories to the ceiling with a little gadget and our phone and that also seems to relax it, and therefore important to continue.

Zoé less irritable today as we gradually grow steroids. Less agitated as well as our new medicine (nothing miraculous, simply a medicine against nausea and vomiting..) seems to make effect but so Zoe even more tired and slow.. also a red eye today and so it's more closed That the other..

If Zoe doesn't complain about her condition, seeing her as weak and changed in such a short time is a real heart- breaking.

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Easter Bunny

April 20, 2019

Less agitation tonight even if always so much hurt to fall asleep. A dose of our famous medicine all the same last night. Asleep at 11 pm awake at 5 in the morning, and there we are resting. With the nurses, we have already had the right to smiles, so to the powers of steroids (at small doses..) to make us a little bit better, we believe it! 🙏🏻💖

A big thank you to the rabbit of the hospital who came to drop eggs in our room and we spoiled ourselves, it's nice! Happy Easter to all of you! 🐣

Medicine

April 19, 2019

Our medicine from last night has done well and Zoé slept all night long. Wanting to anticipate by contacting the hospital for a similar plan for tonight will unfortunately not be enough with our panic attacks, certainly of epilepsy, which came back in the morning. This same drug again administered and Zoé is sleeping. When she wakes up, we will all go to the hospital to review her medication and to be kept in for observation.

Outside, it's a beautiful time: the sun is shining and the birds sing. Certainly the first most beautiful day of the year. But with us, it's the complete calm apart from the needles of the kitchen clock. No one is talking. We're thinking. We're waiting. For what I don't really know. 

Uncomfortable

April 19, 2019

Last night Zoe was very agitated and I had to turn her a good 60 times before she found the right position to fall asleep. And wake up in the middle of the night at 3 in the morning, don't be able to sleep, ask for a kiss from Dad, ask for Mum in her bed, always more side changes and woke up at 10 am this morning.

Tonight, impossible to find sleep, but really, and above all a fear panic, like hallucinations, with when positioned on the side, the arm that is or moves alone, an empty look or at least who seeks something With the head that wants to turn like to look behind. No matter what you do or say, impossible to stop. It was impossible to reassure her.Hoping that the hospital will tell us more tomorrow. This fear of seeing Zoé in such a state, and always this immense inability to have to watch her without being able to do anything or be able to reassure her Me who was tired I'm not anymore.. 😔

 

Tonight, at some point I asked Zoe if she was afraid of something. Among the questions asked to know what she was afraid of, there was " I'm afraid to leave.." your little prayers to all please for a good night this night and the least suffering possible to come.. 🙏🏻💔

Weaker

April 17, 2019

Zoe is getting weaker. Holding her head becomes difficult for , just like finding a comfortable position in his bed. Her empty look are here, even if maybe more in the afternoon and evening. And her smiles, her laughs even more rare...

French Heritage

April 15, 2019

This morning, Zoé was sick again. These new symptoms are so worrying for us. These are long days for us.

These feelings of frustration, fear, and intense sadness that we we have, and then that of anger that amplifies today by seeing the news in France (the fire in Notre Dame) but especially by listening and recognising the reactions. Positive, it is certain with such financial solidarity of the richest and the wonderful speeches of our leaders for and in the name of our beautiful French Heritage. And yet necessarily with a somewhat bitter taste for all the cancer parents that we are and for whom life, our dreams and our future with our children we receive not the same interest and the same empathy of these political personalities and French media.

This cause of the pediatric cancers that I care about and all our families affected and associations have been defending for years. This famous cause to which only 5 million euros will have been granted recently against the 20 million necessary .

As for you little Zoe, don't give up especially because we need you.. ❤️

Practically Perfect

April 14, 2019

No vomiting since yesterday morning, so much better. Tired today as our long nap from yesterday prevented us from finding sleep last night (1 in the morning) and earned a change of position a good number of times.

Two hours of activity this morning with our magical nurse and a nice little visit planned this afternoon and it will be already good for the day.

A little smile from our princess and her new duvet cover. 

No Morale

April 10, 2019

Simple coincidence but since our return from Naomi house last week Zoe has no morale; she growls a lot ( even all the time with us), smiles less and laughs even less. Certainly very frustrated, she has become very impatient and demanding, her OCD does not help in anything (some stuffed animals to place in the bed to the cm near, her little characters that must also be well put in their place, etc. . and when Zoe has an idea in her head, impossible to make her forget, she will growl until and she will not leave you until you find her and it is exhausting, especially when you have a visitor. Ben yes growling fault of being able to talk. No doubt this must be also exhausting for Zoe.

 

Today was easier than yesterday, totally exhausting so hoping for a tomorrow still a little better or at least similar..

H For Hungry

April 07, 2019

Princess is amazing: today, always with her alphabet, in French with " J " for leg and in English with " H " for hungry. One without fault so. 👏

She was as tired and restless tonight, and pretty grumpy in the last few days.. 😔

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Home

April 04, 2019

We are home. 

Although everything was made for Zoe to be comfortable and happy -and busy- Zoe wanted to go home as from Wednesday as she was missing her bedroom and just home really. Truth is we don’t do much at home apart from watching tv/listening to story cds or read stories there. But it is home. She was away from home and stuck in the hospital for two weeks whilst in Mexico and then for another week back in England. And now in Naomi House she could see the other kids, she observed everything, listened to everything and perhaps she realised our magical place is a bit more medical than what it looks and not so much a “holiday” place/destination. Perhaps she knows and understands a lot more than we would like to believe. But what can I say? What am I supposed to explain? Just as we watched Robin Hood tonight she couldn't stop crying because the little mice and rabbits were poor and miserable. Where shall I start as she has got such a big heart and is so sensitive? And she is so young still.

But still everyone at Naomi House did try their best to entertain Zoe and our time at Naomi House was certainly made very special this time again with truly adorable, kind and caring staff to whom we are very thankful and grateful. 

Tonight we are home. She is tired but happy, and so are we. 

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