Yay! This is great news. My daughter Danae has/had (?) that mutation . Really hope things stay on track for you for Christmas 
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Sorry @Toadmum
I just saw your update. Thatās a bit rubbish re: infection and chickenpox making an appearance. Ugh 
How are you all doing? Hope hospital are getting infection under control and the kids arenāt too itchy/poorly.
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Thank you! They found the infection, think he has two of a similar bacteria. One they picked up straight away and one took a little longer to grow on cultures. He seems āwellā enough and no big temperatures which is good.
I had forgotten how annoying chicken pox is! There are a lot of spots but sheās doing fine. Sheās keeping busy with play dough(RIP carpetsā¦) but glad that the day to day hasnāt been too tricky.
I have not been doing very much. Iāve watched some TV, thrown out various Amazon boxes which were housing Christmas presents and generally got myself a bit more organised. Eaten some nice food, exercised and generally tried to be very nice to myself. Another couple of days ticked. I am reminding myself that I can do hard things, even if I donāt want to do them and that seems to help. Overall, not too bad. Hopeful that he might be home for Christmas as antibiotics should finish later this week but Iāve already set my own expectations and the kids that he might not be home as think that is most practical for us all.
Hope everyone else is doing well? @SarahMum we were pleased with the FLT3 piece! Isnāt medicine just magic!
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Day 5 of the pox here and we seem to quickly be scabbing which is wonderful.
Husband doing good. We think a potential discharge on Friday. Iām happy with as close to Christmas Day as they can get to reduce chances of him being back in over Christmas.
Not setting any expectations about Christmas, the day itself or the holidays so if heās home, great but if not, much prefer that heās being cared for and not poorly.
Expecting to be back and forth for blood products and platelets over Christmas if he isnāt back in anyway. Looks like white blood cells / neutrophils may start to slowly rise although they do go up and down from 0 and 0.00s so will see but hopefully see that trend upwards over the next week. The theoretical plan if his levels have risen enough is to do bone marrow biopsy on 29 Dec or very early Jan if not ready at that point. Then into second cycle of FLAG.
Iāll keep posting but wishing everyone a very, merry Christmas and importantly, a happy and healthy 2024.
We finally heard back from our critical illness insurance. Eight weeks is a long time in my view so glad to close that one out. Reminder to all of us to have critical and life insurance if at all possible, although appreciate that being on this site may mean itās too late.
Today I am grateful for Christmas films, play dough, family and friends and all of you who have taken time to post and/or read along on our journey.
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Oh @Toadmum it sounds as if you are being realistic about the festive season.
Perhaps you can celebrate it anytime.
If the monarch can have 2 birthdaysā¦
As I have heard it said it is just a Sunday roast dinner with tinsel.
Enjoy your Christmas films and family and friends are priceless.
Please do keep updating us and take it as it comes
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Hi @Toadmum
Glad to hear chickenpox is on the way out and youāre all getting set for Christmas 
I hope your husband does get home and you can enjoy some family time.
Wishing you all the best x x x
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Thank you for the lovely well wishes.
As of yesterday, we are free of the chicken pox, all scabbed over. I went to the hospital yesterday to hang out with the husband. Heās in good spirits and looking forward to hopefully coming out tomorrow after a top up of blood and platelets.
We donāt have the best track record so far with going home so weāre hoping that by leaving it late, we might make it through Christmas Day. His levels seem to be starting to rise which is great, hopefully this will continue.
Finding Christmas both enjoyable / relaxing / stressful and worrying all in one go. Taking it a minute, hour, day at a time. Thinking of everyone over this time and hopeful for some good news for us next week when we do the bone marrow biopsy.
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Yes, @Toadmum I have my fingers and toes crossed for you all and that your husband gets home and stays the course this time.
They are also crossed for some good news next week although everything seems to grind to a halt between Christmas and New Year.
7 yrs ago I had a hysterectomy at that time and I was let out of hospital on the evening of New Years Eve, I got home and snuggled into my lovely bed and went to sleep and was rudely awakened at midnight by fireworks going off!!!
Your mixture of emotions sound par for the course to me.
Yep, a minute at a time sounds good to me.
I will be thinking of you all, I hope you can relax and enjoy as well. xx
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I was diagnosed with Acute myeloid leukaemia (AML) in Oct last year, had intensive chemo and a stem cell transplant this May. I decided to keep a journal and so glad I did. I read parts of it now and realise how far Iāve come. Take each day as it comesā¦good luck!
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Hi @JillBarke so glad you have posted and it brought me back to re-reading the notes I had taken over the years.
My experience was exactly the same as mine.
My thoughts and emotions were all over the place.
Let alone it was so interesting reading it, yes, I have come so far too.
Taking each day at a time is so difficult, but helps so much, sometimes it is an hour or minute.
Look after yourself and please do keep posting as I look forward to hearing more about you.
Hi all,
I donāt post on here much, but I just wanted to say that I find real comfort in reading everyoneās experiences and ups and downsā¦from both the point of view of the patient and the carer.
My 82 year old dad has Acute myeloid leukaemia (AML) and I would never wish this on anyone, but itās a comfort to know we are not alone.
Iāll be going to spend Christmas Day afternoon with my parents, then on 27th we have an appointment with his consultant to get his latest bone marrow test results. Iāve got a sinking feeling that it isnāt going to be good news, but I will try to treat tomorrow as a normal Christmas in the meantime. No matter what happens we are booked to go to panto at the London Palladium on 29th, so will have a smile and a laugh despite what may be.
I wish all of you the happiest Christmas you can have. And will be thinking of everyone going through tough times.
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Hi @Ilona a good philosophy.
Please do let us know how you get on.
A good panto laugh is the best medicine.
Perhaps write down your questions first and make sure that you get answers.
Please do let us know how you all get o and be kind to yourselves xx
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Hi @Ilona I also find huge comfort from following others journeys and experiences. Sometimes I am looking for hope but sometimes I think Iām just needing reassurance that it isnāt only us walking this path - and also the wonderful tips and tricks that everyone has posted both for Acute myeloid leukaemia (AML) but also for other blood cancers.
Will be thinking of you over Christmas and hope you get some good news.
Husband has made it to Christmas morning without a temperature which is my Christmas miracle. I canāt speak for the rest of the day but he has been able to be here this morning to watch the kids open their presents and last week when he caught his last infection, I just didnāt know if heād be able to get home to do this.
Sending lots of love to everyone who needs it.
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Oh @Toadmum what a true Christmas Miracle.
Perhaps just go with the flow today, you donāt have to be āthe hostess with the mostestā just enjoy.
You have had to be Father, Mother Christmas and Santa this year, perhaps you are the miracle too.
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Hi @Toadmum
Great news and a small victory / miracle for Christmas I hope you all enjoy some lovely family time 
you all deserve it.
@Erica ā¦ Merry Christmas to you & yours , youāre a constant on here , always giving the best advicešŗ
Much love to all x x x
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Hi @Fifimac a very happy Christmas to you tooxx
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A very merry Christmas to everyone. I agree completely - thank you @Erica for the time, wisdom and compassion that you offer so many people on this forum. Your kind posts have meant such a lot to me.
We have had a somewhat successful day. He managed to get through this morning for presents and Christmas dinner but got a temperature late afternoon so I drove him the hour back to the hospital. Our daughter was terribly upset which was heart breaking. As is the way, by the time we got there, his temperature was absolutely fine. They checked his bloods and have taken the cultures and for now started him on oral antibiotics. They did talk to us about him coming home but heās in a private hospital which is around an hours drive and I did not feel like I could safely drive home and get him back again if I needed to tonight as I am so exhausted. Hopefully with any luck he can come home tomorrow and they can keep an eye on him tonight which should let me get a good nights sleep. I sobbed whilst driving most of the way home and felt better after that. So bittersweet but trying to be thankful for the good things that we did get to do today.
There was also some lovely news when they checked his bloods. His platelets are flying, and for the first time in 9 weeks he is not neutropenic - his neutrophils were 1.0!! Weāve never got above 0.20 before and that was last week. During the first round we never got above something like 0.08. His white blood cells are doing good too. Hopefully that will continue ready for his bone marrow later this week.
Iāve just had a piece of cake, laying in bed having had a nice bath. Im going to go to sleep and sleep as long as I can. I had to leave the kids with their grandparents to get a move on quickly to the hospital but I think they have had a nice evening and also means I donāt have to be woken super early.
Another day ticked off.
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H @Toadmum
So sorry to hear Christmas Day was somewhat cut short for you all !
Hopefully tomorrow will bring some better news. Glad to see your husbandās counts are on the rise.
Iām sure youāll enjoy a wee lie in tomorrow, make the most of your me time.
Onwards & upwards again , much love x x x
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Oh, what a day @Toadmum I was just exhausted reading about your back and forth day.
I really do hope you got a lie in today, you really deserve it.
I have blubbed all over our car in the past and yes, I found it therapeutic too.
Please do keep posting and all of you take so much care of yourselves.
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I slept very well and had a little potter this morning and a tidy. I collected him back again late morning with some oral antibiotics just incase and a clear streak of temperatures since weād set off for the hospital. Heās chilling today and we go back again in the morning anyway for checks. Iām hopeful for a peaceful night but I feel less āpressureā now as Christmas Day has passed.
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