Gosh @Toadmum so much has happened in almost three weeks.
You have also come so far.
Have a lovely weekend and try and have a bit of a rest as well as all the things that need to be done.
Enjoy your family visit tomorrow
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Hi @Toadmum
Good to see you are still fitting some normality into your daily life. Itās tough on both you and your husband. For him , adapting to hospital life is hard, you kind of feel that you donāt have as much control over your own life anymore.
Equally being on the other side is just as tough. You still want to be there as much as possible for him but youāre still working , looking after your kids and home. It really takes it out of you, mentally itās draining.
Iām sure if his counts are at a safe level he will get home for a break before next treatment. Itāll be good for you all. I can understand your apprehension however.
I was scared Iād become unwell while at home and get in a mild panic thinking of things that could go wrong.
Of course, I was fine and enjoyed being home , my own bed , food , general home comforts.
Iām sure heāll be excited for the kids & yourself visiting today.
Take care, best wishes to your hubby 
x x
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Hi @Toadmum
Sounds like quite a lot has happened so keep on trying to focus on the positives and taking care of yourself and the kids.
We have been thinking of you
@Fifimac - you go girl! Great news re: MRD. Time for that new immune system to start doing itās thing
@Erica I hope you are feeling brighter? I donāt like to hear that you are having a rough day. You are ALWAYS looking after everyone on here. Do make sure you be kind to yourself xx
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Hi @SarahMum
I hope Danae is keeping well, still munching on the hula hoops and all the other goodies that she enjoys.
Also hope youāre getting some bike rides squeezed in to your schedule.
Love & best wishes to you both 
x x x
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Hope you are all having a wonderful weekend. We had a good visit today, and some child related activities this morning. I also managed to squeeze in some exercise so that was really nice.
My husband experienced his first infection last night, albeit mild from what I can tell. A spike in temperature that they picked up very quickly followed by lots of antibiotics and monitoring. They thought it could have been from his PICC line so swabbed and flushed it with antibiotics but not sure it was that. He also had a chest X-ray today and a lovely stool sample. In some ways it was very reassuring to get an infection under our belt. I know that sounds odd but we knew it was a matter of time. His temperature is back to normal today and feeling well but the antibiotics and close monitoring will continue.
I am very pleased it is still Saturday, looking forward to a day of rest tomorrow.
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Yes, as you say @Toadmum unfortunately infections are par for the course, but I am impressed that the hospital picked it up so quickly.
I am glad that you got time for some exercise today, what did you do?
A day of rest sounds good to me, it will recharge the batteries.
Take lots of care @Toadmum and family xx
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Hi @Toadmum
Yesterdayās visit will have done your hubby the power of good. Seeing the kids will have given him a lift.
Infections 
yep I think weāve all experienced a few of them at some point.
I used to think , my god they are almost guaranteeing that Iām going to have at least one infection. I had a mild one to start with , infact so mild , I didnāt even know about it ā¦ it was just my temperature that alerted them.
I also had an infection in my Hickman Line also later down the line.
They are well prepared for the infections thankfully.
Glad he is feeling ok though.
Enjoy your Sunday off 
I hope you have some sunshine. We have a mild frost but nice and sunny.
Best wishes x x
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@Erica me too, although heās currently in a private hospital so I donāt know if this has anything to do with it, the ward is very quiet, itās pretty much just him at the moment.
I did a core workout on a little rebounder trampoline. I donāt know if it does much but itās fun and thatās what counts!
Hope you are doing well this weekend and making time for yourself too!
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He really enjoyed the visit @Fifimac and we did too. We canāt go every day now with them as itās a bit of a drive so takes too long after school but seeing him at the weekend, for now, seems to tide them over through the week.
Thank you - had a good weekend, we also had frost today and noticed the temperatures really lowered from yesterday afternoon! Hope youāre having a good one.
Not visited husband today but he is in good spirits and seems to be feeling well so in my spirit of one day at a time, appreciating that.
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Hello!
Itās been a pretty non eventful few days, thankfully. Husband is doing well. Currently neutropenic still and relaxing in hospital. We think his counts might start to rise from later this week.
Kids are doing good, and I am doing OK. I had a lot of tears on and off over the weekend but I feel a little brighter again yesterday and today.
We seem to have found a bit of a routine and rhythm at home, which has helped and some of the initial shock or feeling out of sorts / routine / kilter has worn off.
Hope everyone else is doing well today. Lots of love!
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Hi @Toadmum a lot of tears is OK and I think very natural, a lot better out than in.
Your bit of a routine sounds good for all to me.
Give yourselves time and be very kind to yourselves.
Please do keep posting
I will!
Hospital is starting to prepare us to think about him coming home for a visit. Trying not to panic at the thought. Any tips welcomed for making home welcome as well as anythingās to think about or bear in mind!
Lots of love to everyone
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Oh @Toadmum
Firstly everyone is different so ask your husband
In my case just have the bed turned down ready, there is nothing like your own bed and expect perhaps that your husband might be very tired and perhaps not ready to be bombarded by too much all at once.
Obviously the children will be excited to see him.
There is the sanitising side, but donāt make too much of it.
Perhaps healthy, germ free visitors and by invitation, some people give them time slots when your husband would like them, they are lovely, but can be exhausting especially if they outstay their welcome.
Make life easy for yourself but perhaps donāt sit there peering at your husband and asking if he needs anything or is OK!!
Relax and be led by your husband your usual lifestyle.
Enjoy
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Hi @Toadmum
Glad youāre feeling better , a good cry is definitely needed at times. Everything builds up inside us and letting it go can be a relief.
I always try to stay strong & put on a brave face as I hate people feeling sorry for me ( why I donāt know )
Anyway, as for your husband having a home visit , I bet he is like the rest of us patients. Just to sleep in his own bed , spend quality time with you & the kids will be enough.
My only bit of advice would be , try to discourage visitors. As hard as that sounds , my Consultant always told me I had to be selfish ā¦people mean well but itās so easy to pick up an infection at this stage of treatment.
I used to FaceTime family & friends. Not as good as face to face but itās still keeping in touch.
I was issued with a thermometer to keep tabs on my temperatureā¦ any sign of a raised or lower temp then I had to phone immediately to the ward. Thankfully I never had to.
Best wishes x x
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Hi @Fifimac
So sorry I didnāt see this sooner, I was decorating and then a few things went wrong at home causing quite a bit of grief (car, boiler, washing machine and lawnmower!) so have been having a quiet (offline) time since the chaos of sorting things out.
Ah, thatās disappointing to have some cells still showing up in the test. Of course, everyone wants the 100% negative result for this one. Of course you do. However, I think itās fairly common to have a few cells remaining - Iāve read of people saying so on different sites, and they continue to go on and get better. Once the cyclosporin is out of your immune system and no longer suppressing it, hopefully your immune system will sort the cells out via the graft-versus-leukaemia effect. That should kick in any time soon. The donor cells - no longer suppressed by cyclosporin - should recognise something on the surface of the lekaemic blasts as āforeignā, and mount an immune response to get rid of them. This effect is relied upon by the medics to clear up any MRD. So fingers crossed it naturally resolves itself once your immune system fires up a bit.
Itās so natural to look at the negatives in this situation, @Fifimac - dont be hard on yourself for doing so. After all, we had one of the most negative bits of news possible, initially. Every bit of negative news thereafter feels like it is possibly on that scale. I certainly felt as if it were. When I was told I had heart damage, for weeks I thought I was going to die of heart failure any time soon, because I was sent to a āheart failure nurseā (great name to instill confidence in patients, huh?) and no-one would really clarify whether I was in danger of dying from the damage. It felt nearly as disastrous as the Acute myeloid leukaemia (AML) diagnosis! But actually, Iāve recovered from the damage. I really think some medics need to spell out very clearly how serious issues are - anyone whoās had a terrible diagnosis is possibly seeing the worst in all the bad news thereafter, understandably.
Well, I hope this week has been better for you, and that youāve done some nice things. Todayās beautiful here - very crisp and autumnal - so Iāve just had a lovely walk with our dog. Hooe youāre getting out in some sunshine too. Xxx
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Hi @Toadmum
So glad to hear your husband has been feeling ok through the chemo, and that youāre looking after yourself too. It sounds like youāre both doing very well in the awful circumstances- thatās a really great start.
Wonderful the children were able to see their dad too. That must have been good for you all.
And even though itās daunting, itās great news your husband may have a week at home. All I can suggest is that you perhaps monitor his temperature daily, and feed him up with whatever he fancies. Oh, and I felt enormously cold at home after hospital because I lost weight, had no hair, and hospitals are so warm. So cosying up the house might be required, if so. Otherwise, I hope you can just relax and enjoy it. Be a bit indulgent, and hunker down to enjoy family time together.
Fingers crossed for you all. X
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thank you all for the lovely advice! As I anticipated, our first visit out did not go smoothly.
We drove home this afternoon and were probably home for an hour or so before he spiked a little temperature so I had to drive him all the way back again. Iāve done a lot of driving today with the kids and backwards and forwards to the hospital which is an hour ish twice so Iām now tucked up in bed. I think he was sad that he didnāt get to do his visit home however glad to be back in his room in the hospital and getting the IV antibiotics etc. A mixed set of feelings I guessā¦
Iām trying to be thankful for a few things 
- He went home for a few hours and saw our dog
- I noticed when something didnāt look quite right and kept taking his temperatures despite him being somewhat annoyed by me doing it
- I successfully navigated first return to hospital
- It wasnāt 2am on a Friday night and we didnāt have to go into A&E locally
His temp is going down slowly and is in the best hands for monitoring and care.
I feel exhausted both physically and mentally and hope I will get some time over the weekend to rest.
Hope everyone has a nice weekend.
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Oh @Toadmum You must all be absolutely exhausted and I hope you all got a good nights rest.
Yep, your husband saw the house was still standing and is now back in the best place with a temperature
If I may say so you are also really getting to know yourself and your needs so well
I am impressed with your gratitude list and you were brilliant.
Make yourself time to rest over the weekend, just do the essentials for you and your children oh, and the dog.
Look after yourselves
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Hi @Fullofbeans
It sure sounds like youāve had your fair share of faulty home & garden appliances , I hope everything is in working order again ! Last thing you want is a faulty boiler especially coming into winter.
How is the decorating looking , has that been a success ?
I am doing ok , as I say, physically I feel really good. I will have a repeat bone marrow test on Wednesday then itās the waiting game !!
Your heart problems certainly sounded scary, Iām glad that didnāt get any worse.
You look back and wonder how the heck have we come through all of these ups & downs , but we have thankfully.
Hope everyone else is keeping well
@Erica
@GemmaBloodCancerUK
@SarahMum
@Toadmum
@LauranBloodCancerUK
Thank you all for being there when we all need a wee chat.
Have a good weekend ( well what is left of it )
Bit damp up here in Bonnie Scotland 
but still beautiful.
Best Wishes x x
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Hope the bone marrow goes well on Wednesday!
Husband doing well, will stay on antibiotics until the 7 days is up. New PICC line also at that point, then bone marrow and prepare for chemo early next week.
Thankfully he is feeling well so hopefully a non eventful few days. His rbc and platelets are on the up so weāre hoping we will see some movement in his white blood cell and neutrophils in the next few days.
All OK with me. I didnāt visit over the weekend as I had a cold etc but have been today which was really nice. Always feel a bit better having seen him and find more of my negative thoughts pop in when Iāve not visited.
Hope everyone is doing well today and have a lovely week.
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