Yesterday we all felt very down. Niamh spent most of the day asleep. She woke up properly around 4.30pm in time to go for a swim which she thoroughly enjoyed. She stayed awake till about 8pm but it was an effort.
We knew that a few things may explain her sleepiness:
1) she had some nozinan on Monday night as she was a little agitated in her sleep. Nozinan is a type of tranquiliser. She only had 1/2 the amount she was given in A&E 10 days ago but it may have made her more sleepy.
2) it is common for children who have had radiotherapy to have a sleepy phase 6 weeks to 3 months after the end of their radiotherapy treatment. Niamh is right in that period.
3) the tumour. As the tumour grows larger, Niamh is expected to be more and more drowsy, sleep more and one day not wake up.
We feared the worst yesterday. When she woke us up at 6am, we both felt relieved that we were given more time. She went on to have a great morning. She watched a bit of TV in bed with Emilie and us (a bit of a squeeze), played with various wooden toys that have become her favorites in the playroom. We even took the girls for a walk to Cadbury World and spend some time in their free playground. By the time we got back Niamh still had some energy for a bit of coloring. She fell asleep around noon, her usual nap time since we've been here.
We are all feeling a little more positive. We know the end is near but we are just not ready. Will we ever?
hi ya,
ReplyDeletei really just dont know what to say to you. we've both been through it when the dr first gives you the diagnosis and no matter what anyone says it just doesnt add up to how you are feeling. i think that you are all so amazing, yourself, alex, emilie and especially niamh. we send you loads and loads of love, and again if you need to chat then you know where i am. call anytime, middle of the night it doesnt matter. thinking of you all. kate.
p.s sorry if this has posted more than once my pc is playing up again.
Je pense bien à vous,il faut vivre le moment présent comme vous le faites ,l'avenir personne ne le connait(pour aucun d'entre-nous),vous donnez beaucoup de temps et d'amour à vos enfants,c'est formidable .Avec toute mon affection.Bises à vous quatre. Claudie
ReplyDeleteComment pourrions-nous être prêt face à un tel évènement ? En tout cas, vous profitez de chaque bon moment et c'est essentiel pour affronter l'avenir. Je pense à vous très souvent, vous êtes tous admirables... Un soutien amical de France. Christine
ReplyDeleteIt is hard to find words, but you seem to live wisely, with your hearts and your minds, through this time. I hope this stays with you, and send all my love to all and each of you, Niamh and Emilie, Helene and Alex. - Thank you for the pictures from last week (I have been away a little). It was good to see your calm and affection, and some smiles.
ReplyDeleteAstrid
All we can say is that we're thinking of you.
ReplyDeleteAll our love
Ross & Hannah
Don't think the worst, tumours don't grow evenly they go faster and slower. And nozinan really does make them sleepy. It's so easy to panic over evey change. You will have a little more time.
ReplyDeleteWe are all thinking of you so much and still hoping and praying for miracles.
Love Lucy James and Daisy
You will never be ready for such a time but you are doing the right thing, enjoying every second together and sharing special times with Emilie too. You will remember these precious days forever. I wish that time would stay still for you. I loved the gorgeous photo of your beautiful girls cuddling up in bed together from a few days ago. Be brave and know that we are thinking of you and praying for you every day. Love always Kate, Jon and Florence
ReplyDeleteSending you lots of love and praying for a miracle. xx
ReplyDeleteLorna A