Friday, June 8th 8:30pm

Sigh… our meeting ended around 4:00pm..

I know people have been checking the site, and waiting, but couldn’t really get on the site before now. Wanted to wait for Kerrie to go to sleep and she’s sleeping, peacefully, next to me now. It’s just not possible for us to call everyone, and none of us are going to want to say this over and over again so please forgive us if we do not give you a personal phone call. This site is going to be the best and easiest means to get this information out.

Bottom line.. Kerrie was given three options. None of them pretty, and only one involving treatment, so please be prepared for this before reading any further:

Option # 1: Stop all treatment and begin Hospic/End of life care. We would take her home and she would be kept comfortable for whatever time she may have.

Option # 2: Stop all treatment for the GVHD and Leukemia and begin Supportive care. She would come to Henry Ford, once a week, for blood work..possible transfusions, etc. Her tube feedings would continue and she may be able to have Physical Therapy depending on platellets, etc. She could potentially be at home, but most likely would have to go to a sub-accute rehab facility or nursing home. Mom, and the rest of us, would most likely not be able to care for her at home. Because we would not be treating the GVHD or Leukemia, this would simply be Supportive care until she became too ill too continue and would then become Hospice care. Dr. Jana felt she would have the potential to be with us approximately 6 months.

Option # 3 : Dr. Jana will make one final attempt to stop the GVHD. If this is successful she will then need to try to treat the Leukemia. She was very upfront with us and let us know that it does not have a high chance for success. Treating the GVHD only has a 40% success rate.. as for the Leukemia.. they’ve done extreme Chemo and a bone marrow transplant and that didn’t work… but they would try the chemo again if they can get the GVHD under control.

This isn’t as easy as it sounds and will involve some very risky medication. Kerrie would be given 3 doses of a very strong steroid/ antibiotic( Not sure which it is) in an attempt to end the GVHD. Because she is already immuno-compromised, and this medication would make her even more immuno-suppressed, there is an extremly high risk of infection. Kerrie could become very sick, very quickly.. and the situation would be fatal. It will take 7 – 10 days to administer her 3 doses and a total of 2-3 weeks to determine if it has been successful. If it is successful, they must imediately begin chemo for the Leukemia. Chemo is already hard enough.. in Kerrie’s condition it is extremly risky.

Option # 3 is her only option for treatment.

Kerrie was given her three options and has decided she has to at least try. There isn’t really a choice. If I were faced with the same decision I think I would do the same.. but what kind of decision is it really? No treatment and have the possibility of a few months…. take a shot knowing that it may mean only a few weeks.This is hard on all of us, but none of us can even begin to imagine what this is like for Kerrie. My sister is so beautiful, so strong… I wish I could be half the woman she is.

After she told us her decision, she polled each of us to see what we had wanted ( she did not know our choice before she made hers). We all said our choice would have been to have her try.. and she said, “Good, I just wanted to make sure you were all behind me on this one.”

Her first dose will be tomorrow. They will give her a test dose in the morning and, if she doesn’t have a reaction to it, they will give her the full dose tomorrow afternoon. Mom and I will be with her tomorrow.. If all goes well, I will head home tomorrow night and be back by Wednesday. Need to get a few things in order at work, but will be back as quickly as possible. I don’t plan on leaving her side, once I’m back, until she kicks me out because she can’t stand the site of me anymore ( Or she has other visitors 🙂

If you were planning on visiting Kerrie, you should do this very quickly. Within the next 2-3 days. Once this medication begins to kick in, she is at such high risk that too many people coming to see her could be extremly dangerous. The rules are going to be very strict!!

Absolutely no more than 2 people in the room with her at a time. Your clothes must be clean.. please be sure to change your clothes if you have been working in them all day, etc. If you have the slightest sniffle please stay away… the slightest tickle in your throat please stay away. If your kids have been sick, or been around other sick kids ( or if you have) please stay away… No hugs.. no kisses..At this point we aren’t looking at gowns and masks, but that could come.

If you plan on coming to see her this weekend, please call us first. Call Mom’s cell phone, Kerrie’s or mine ( if you have the number) we have family members in town, from out of state, and they will need to be given priority. If there are already a ton of people in the waiting room, waiting to see her, and you only have a few minutes… it’s best to call first to make sure you won’t make the drive unecessarily.

Kerrie’s worries that no one will come to see her. The longer she’s been sick, the fewer visitors she’s had, but her family and a few select friends have stayed by her side the entire time and we thank you for that. She really needs you now. Needs to know you still love her, still think of her and that she is not being forgotten.

To sum up the most important part.. this is a risky situation, but Kerrie’s giving it a shot. Visiting her in the next few days is the best option as she will be extremly immuno-comprimised in the next few days.. and don’t forget we are going to be insanly strict about the rules of how many people in the room, sniffles, etc.

Tomorrow’s dose will be a test dose and, if she doesn’t have a reaction to it, her first does will be scheduled after that.

As always, we’ll keep you updated.

Jenn