I doubt they are changing the chemo as the induction protocol has been standard for years. Three days of idarubison for the days and ariC day one thrush seven of my chemo brain serves me right. It it's probably too early for the cryogenic tests to be back, so treatment should be standard. At this point the labs are to check for toxicity and counts. . My floor was dedicated for leukemia and lymphoma treatment so no plants or flowers were ever allowed. Ask of the rooms had negative pressure and severe hygiene precautions were always followed.

As far as visiting, that is so individual. I believe I mentioned my husband had his job and three young girls to take care of so visits were infrequent. My girls did not visit until two weeks due to cold s. They came up the day I shaved my long hair to donate to locks of love. We made it a party and my hubby shaved his too.

I would ask Jamie how much time he needs. I actually did fine with alot of alone time. I read my bible and chatted with my nurses. I also had a visit everyday from the doc, a pa and a social worker. For me time went by quickly. The tv options were bad, no dvr and direct tv , I'ma huge documentary lover especially ww ii so iI watched dvds.

You two need to come off with agood balance, everyone is different. Praying for remission and good cryogenic for jamie

Julie

Good questions ... he will hit bottom a few days (maybe up to five) AFTER the chemo. Bottom is when his numbers (WBC, pletelets, RBC, neutrophils, etc. bottom out. It takes a while for the chemo to kill the cells -- if it did not it would kill him -- so it could be viewed as sort of a light poisoning and very targeted. But when he starts to get side effects it will be not of the chemo directly but of the low numbers. You body needs good blood -- all of the organs, and when it is denied it does not like it and starts to yell. The first thing to go it the digestive system -- it needs LOTS of good blood, and when deprived there will be effects from the tip of his lips to the ... well lets not go there -- could be constipation or diarrhea -- I had both (not at once of course), but it hits different people in different ways. Let us know what he is running into and we will try to give some advice -- like for sure his mouth will get very tender -- see if they recommend a salt and baking soda solution -- that works quite well and can be used like every hour on the hour -- or whenever he goes to the bathroom, which will be more frequent than that because they are probably flooding him with saline solution to keep the chemo from damaging his kidneys. Also, he should up his drinking of water and perhaps some other liquids.

Visiting -- you really need to get into a regular schedule that fits your work. This is a LONG term proposition -- not just a couple weeks. Perhaps they did not tell you. You really need to know -- it could well go on form months. Please don't let that get you down. It becomes a routine and you adapt to it. So, try to work it in and save your vacation for later on. They might keep him in the hospital -- they did me -- until they finish induction (that is getting him into remission) and then perhaps a break and a break between consolidation treatments. So, save your vacation time for those breaks and just for now try to get into a regular schedule since it sounds like the hospital is not to far from your work (I hope). In my case it was about two hours, so there were days my wife could be there and others she could not. She was the only one I would allow in the room (other than the hospital people of course), and my grown kids came to see me a few times but they live across the country so were not there that much. Point is, isolation is necessary and staring now is good. He is not neutrapenic yet (that is when his body cannot even fight of the normal things that we fight off every day. The reason I would recommend you starting it now is that the last thing he needs is someone bringing him the flu or a cold right now. So good you are starting now, and sincet you are the care giver, you need to be very careful yourself.

They do a blood draw with his port every morning -- I would expect he has a port by now ... if not he needs to get one. Not sure what they do with it but for sure they watch the numbers and see how they are dropping -- and if things get too low they will give him a transfusion -- blood and platelets. Don't be concerned about that -- he will have a dozen or so before he is done -- that is routine.

First week -- he will think he is superman because no many side effects. Hey, this is a piece of cake ... NOT -- wait until about five days after the end of the chemo. That is when things will get bad. Just be ready for it and when it happens don't get upset -- it is normal for this treatment.

Can he use his computer? I never stopped working but that is because I am a technical writer and they let me have my computer and they had a great network that they let patients log into. He needs something to pass the time one way or the other -- this will depend on his nature and what he enjoys ... it is important to find something to pass the time so that you will not feel like you have to be there all the time. So give that some thought with him and see what you can come up with. I never got bored myself, but that only because I could keep doing what I always do. Some people have a real hard time with boredom.

Good start -- keep asking questions -- we are here for you and Jamie. Take care -- dave

Noodles, (sorry I am terrible about giving nick names)
Yes on the pressurized room noticed that right off, they did mention no fresh fruits and veggies but nothing about cheese as I had read on here. I am sure his day is full seems there was always someone in the room for something so I am sure he is not bored, he is a history channel junkie so he always seems to find something to watch. I suppose my conflict stems from loosing my mom to cancer years ago, I kept working not wanting to jepordize my job, she went very quickly I thought I had more time I just dont want to make the same mistake. He understands I want to be there but he is a realist and realizes I have to keep things up here, I live about 50 miles from the hospital and going there requires me having to also make arrangments for my animals if I choose to stay in the room with him like I did the first 3 days. What a wonderful donation, locks of love, Jamies daughter is having her hair cut saturday for the same thing.

Thank you little d, I will take that advice, yes they told us 4 weeks in the hospital for induction, then a break then back again they said about 6 months. Yes he had the surgery to put the port in on Saturday. Jamie is a contractor, builds custom homes. He does have a laptop there and has used it to contact social security but that is about all. By the way he mentioned he can taste metal like I read in your journal, but repirts he can mask the taste with a mint.

If mints work, that is great. I believe the sugarless one are easier on the mouth. Hard candy of any sort wears out my mouth even without chemo, so he has to be very careful what he puts in there. Perhaps some of those chocolate covered mints would be great for him -- easy on the mouth. No toast -- too rough. The softest toothbrush you can find and no flossing. The floss can cut into the gums. It is hard to get all of this at once -- the people on this list got it over months.

Potential idea -- there are these house design software packages -- I bet that could be something he could get interested in. I used one to design my new house, but would search all over -- I did not particularly like the one I got, but it was too late once I got into it. He has the background for that and perhaps even for specking out what materials to use and things like that. I would think that there is a big demand for that -- perhaps he can use his time in the hospital to train for something like that. I know most custom builders now have to have someone to spec out the design and it is not something that most people can do. Do I sound like a college professor?

The taste will be there for a while, so if there is anything he can do to live with it, that's great. I doubt it will go until well after his numbers get back up and we are talking weeks for that. Don't get too anxious -- have to be patient.

Hopefully you are getting into a schedule that you can live with -- it is very important that you take care of yourself. If you come down with something you will not be able to go see him and that would not be at all good. So eat right and stay away for germy people -- you may have to do a bit of isolating yourself.

You are doing great -- Jamie is so lucky to have someone as dedicated as you are. You are a gift from God. Take care, we are praying for you and Jamie -- dave

just catching up on posts from when I have been away looking after mum, sorry if this is too late

Also being a carer not someone who is getting the treatment I had to use my sick leave and luckily not too much of my annual leave.

I used mine when mum was out of hospital, then I could cook and clean and go walking with her to build up her strength for the next round. I thought whilst she is in hospital she has people looking after her, best to use my sick leave when she was at home.

Hope that helped a little :)