So still trying to get her into remission -- we will be praying for that to happen. At that point they might do some consolidation rounds, or in some cases I have heard them going straight to transplant so as to take no chances. I am sure your med team is totally on top of things and that they will make the right decision in this regard. Thanks for keeping us up -- daveB

They're definitely talking about going directly to BMT, sending her home for a week or two to get some rest, then right into BMT

Sounds like things are progressing quickly which seems like a great thing. Beat the aml beast into oblivion once and for all. Praying for a cure.

Blessings
Julie

Thank you for your support as always. I need some substantive advice regarding the BMT now. We had a conference with the BMT clinical social worker yesterday. We were informed that we must have a 24/7 caregiver in place for a period of 3+ months (100 days) before they will schedule the BMT. We're obviously not there yet, but I want to be ready, and as I mentioned before I'm not going to tolerate any administrative delay if she's medically ready to go. Can anyone tell me from experience the level of care that is required at home after BMT, both initially and as time goes on? I assume its more intense in the beginning and easier toward the end, if all goes as planned. We've also been told that my sister's home in San Ramon is too far from Stanford, and we will have to rent an apartment close to the hospital (they apparently have some available on an ongoing basis). We are planning on having family out there at least for the first couple of weeks (my wife is an RN and will handle the beginning), not as the caregiver but to supervise and make sure the caregiver is working out.

Everyone's journey is different my son had his wife and mother in law (lvn) with him and he didn't need anything other than to be driven to the clinic for his blood tests. They actually released him to return to his home 100+ miles away at week #3 after release from the hospital, but I know others needed alot of help. I would say figure on giving alot of help and care.


Hugs and prayers

Karen

I agree that it depends. The first month after transplant I needed someone with me most of the time. I was too weak to do anything. I assume she will need help in buying food and preparing it, cleaning, sometimes she may need help bathing or just being there with her at night.
There are also many medications to take and probably driving to and from the transplant center a few times a week.
I also think that the emotional support is very important.
The individual experience can really vary. I had my husband taking turns with my nieces and brother, and had someone with me most if not all the time.
I think it's also because the first 100 days are when serious complications can occur and so close monitoring is really important.

I am not in the U.S. but when I was thinking of the option of getting the transplant in the US, I was told by some centers that I'd need to stay nearby for 100 days and others even wanted me to stay near for a full year... And yet I was back at work before my 100 days. So it's super personal and individual.
The first month is the roughest, in my experience.

Good luck!
Abby

Abby,

So great to hear from you. Back to work at day 100 days, you are such a warrior!

Blessings

Julie

Abby
I agree its good to hear from you.


Karen

I would advise you to get all the necessary information for 24/7 home care and prepariation if the home for your sister.
Take Heed, it is a arduous task, you yourself will need at least some relief help.
Breathe, take one step at a time....and make LISTS.
Extensive home Prep includes eliminating anything that can create problems ie: dust, plants , No Clutter...even no furry pets the more simple the environment the easier it will be to keep it immaculately clean.
I would suggest having a thorough clean of everything with special anti germ cleaner (usually the hospital will recommend products )
I recommend an IQ Aire Cleaner, which is amazing for clearing air of dust, fungal spores and pollens of every kind.
Keep hand sanitizer everywhere. Stock up you will use that constantly.
Protective gloves for sister and other help. KEEP CONTACTS TO MINIMUM
You will need some med supplies..thermometer and such.
Keep a few binders and logs for All meds.
This is extremely important...you may find meds are changing quite often as situations may crop up.
You will be the Main person who can give an account t of every detail of minutes and hour of the day....if a fever, or any other obstacle crops up.
The doctors at the hospital, will rely on YOUR DETAILED ACCOUNT Of what was the precursor leading up to that fever or obstacle...
Helps ghem deal with things faster
.
Food is Extremely important. The hospital will give you a list of
OK and ABSOLUTELY NOT OK FOODS. Preparation and handling of food.
Extra Proteins are essential. The Nutrionist will recommend the best for your sister, if she needs a supplement protein.
Please be mentally, physically prepared. It may seem overwhelming,
Reading all of this, however if you are prepared, you will be able to take one step at a time.
I am sure other people will jump in and add their advice.
I want you to know, my family will be praying for your precious sister,
And you, MAY GOD KEEP YOU IN HIS INFINATE CARE,
Love, Sandra
ps. If you have any other question, if I can help you, I am here for you.

Hi. I would say you do need a 24/7 caregiver not because she won't be able to do anything for herself but rather to discourage her from doing things like cleaning up the house, taking care of a pet, and most of all to help with things like getting dressed, showering, going to the bathroom, etc. Again, not that she won't be able to do these things but sometimes she may get a little dizzy getting up or be a little unstable on her feet. At night she may need to get up and someone needs to make sure she gets safely to the bathroom. Someone will need to do the cooking, she really shouldn't do that stuff for at least a while.

Your center will give instructions on how to prepare the home. It's not like she will have to live in a bubble, but she needs to use good sense and take reasonable precautions to avoid germs. Some centers are more strict than others. For instance, my center did not make me relocate my dog, only insisted that I didn't handle or pick up after him.

Between my wife and boys I almost always had someone at home with me. My brother in law works close by and stopped by from time to time also, a great help. And on the rare occasions where I needed to be alone for a short while I wasn't allowed to leave my bed. I kept a urinal handy and a bottle of water and just waited until someone came home. So I think a 24/7 caregiver really isn't overkill, it's necessary.

Good luck and I hope she can schedule the transplant quickly.

Lou

The time varies so much. There is a "dorm" facility a few blocks from UCLA where they housed all post transplant patients ( not just BMT but heart, etc). The team also advised my brother 100 days so he had to have his mother in law fly in as he has kids ages 2& 3 and there was no one to take care of them for such a long extended period of time while his wife stayed with him at the dorm/hotel. In reality he stayed less than one week.

It's better to plan for longer since everyone's situation is so different. Congrats to Abby for returning to work in less than 100 days- it's been over one year for my brother and he's still not in any "return to work" shape.

Thanks all for the benefit of your experiences. We're at day 14 now and still waiting for blood values to begin recovering and then the all important biopsy. I'm currently going through the list of about 20 caregiver companies provided by Stanford, and trying to narrow down to 2 or 3 which can fit our need. Honestly its just good for me to have a job to do, makes the waiting a little easier. Stanford says that the apartment will not be a problem and will not delay us, they can handle that even at the last minute.

Update:
My sister's counts finally began to rebound over the weekend and with her wbc at 1.1 and anc at .5 she is being discharged today after being inpatient at Stanford since June 8, and 3 rounds of induction. She is scared and nervous but at the same time looking forward to being home and seeing her animals. She will tentatively have her BMB next Friday if anc reaches 1.0, at which point we will find out if the third try at induction has achieved remission, and we can move forward with a transplant. If not, I do get the feeling that there wouldn't be another attempt at induction but rather some other course such as clinical trial.

Praying that the third try did the trick.

Karen