Shane - I want you to know how sorry I am for the worry that you and your wife are experiencing now. It sounds like you have a good plan in place. Looking forward to to the news that counts have recovered enough that you are able to move on to the next phase of this and get her back home with your sons! All the best to you this Easter, and always.

Robin

Shane,
I too hope that things fall into place quickly for your wife. I know that the waiting game can be so taxing, but things generally clarify quickly. Very often counts edge up with a snail's pace until they reach a critical mass and then shoot up nicely. I see that you have experienced that type of trajectory before. I wish that the treatment center were closer to your home. The long trip takes so much out of both of you. I only live 38 miles from my hospital, yet it can take 2 hours or more to get there in traffic. I can't begin to imagine your trip. I will be making some prayers this Easter for your wife and just know a donor will be available. There are over 15,000,000 wonderful donors on the registry world-wide. My donor lives in Germany. The small world we live in does have its pluses.

Please stay strong through all of this and please keep us informed of your progress and ask any questions that our collective experience might make us able to answer.

Take care,

Cliff

Shane,

The waiting is so difficult. I am sorry you sll hsve to go through this trying time.
I hope things will fall into place for your wife.soon. Once those counts start to go up, they shoot up quite quickly. Then you can move on with the next plan. In the meantime keep strong for your family. We are here for you, all the time. We really care about you, your wife and you boys.

Ben and Sandra.
Sandra and Ben.

Shane,
please forgive me for my mixed up wording. I am tired and waiting also.
Sandra.

Shane,

We all know here that one step at a time is the goal. Your wife is SO YOUNG and that is SO GOOD Never forget that. Andrea's husband says 12 for 400. (What's 12 months of struggle) for 400 more months of love and life. (We adjust that second number according to how long we want to stick around).

We are here. We are all battling in one way or another and we are all your soldiers in the trenches. We got your back.

Ed

Thanks everyone. I've read a lot of stories on here and although I haven't posted I've thought about and prayed for the whole group. Every time I look here I'm amazed at the caring and kind people. Her name is Hayley and she appreciates it also.

Shane

Dear Shane,

My boys are 10 and 12 now, and were about your boys' ages when I underwent treatment (I also have an older daughter). I know how tough this is on the whole family.
I was 42 when I was diagnosed (August 2011). I also know the search for donor (my siblings weren't a match. I ended up not having a transplant as first line of treatment, but still went through the search, as the decision not to transplant wasn't obvious). It takes time. And I too am grateful for those 16,000,000+ amazing people out there willing to donate.
Finally, my counts were always slow to rebound.

Of course, your wife's age is a huge asset in this disease. It's a marathon, as you know, and really tough on everyone around. You sound like an amazing support to her. And we are here to support you in anything we can.

Lot of health
Abby

Shane -- when the counts don't come back right away you really start to get worried. I was a slow recoverer myself but they just told me not to worry. Only in a few rare cases does the bone marrow fail to start producing good blood cells again. I know and feel for the very few on this list and am praying for them. But that is a very rare situation and we can be positive that your wife's will get back up within the next few days. It takes a week to ten days after chemo to really hit the bottom, so she really is not that far behind. In the meantime you know all of the precautions that need to be taken during the waiting game. Please don't take anything for granted and if at possible keep her away from people. I even carried a paper towel with me and did not even touch any surface that I was not sure of. And, of course, the mask, no fresh veggies and all of that other stuff. Keep up hope and your prayers and she will be back in no time. Please keep us up on this thread. -- dave

Shane,

I think we should start calling Dave Merlin, because he is truly a wizard in everything. I have nothing to add, because he is so right. Don't focus on numbers. I say that sincerely, and not because I was strong enough not to when I was recovering from the various tortures. The recovery rate is sooooo different for everyone. Just have Hayley take the precautions that Dave outlined. It's really great that we are moving out of disease season (winter) and moving into a period when people rarely come in contact with the bad viruses. Food is the major issue....you want to stay away from the veggies etc. because they can sometimes harbor salmonella and listeria. I got used to the low microbial diet. Fortunately, ice cream and cake are not on it.

Love to Hayley.

XCliff

Shane,

I'm 37 years old and came out of remission last year. I did a round of chemo in November came home for about 3 weeks then went back for transplant. I'm also a patient of Vanderbilt! I've been fortunate enough to have all my treatment there. We drive about 21/2 hours, so I understand being away from home. The staff and Doctors are all wonderful. She's in good hands. If possible sit back and enjoy the new floor, the rooms are very nice and enjoy the hospitality. Everyone is so nice! I can hear the cleaning lady now, I believe her name is Mrs Hattie. I do hope her counts rebound soon.

Trish

Update on Hayley: induction chemo ended march 13 and as of Wednesday April 24 she was still getting blood and platelets. White count and ANC had been looking great until today and they dipped a bit. Bmb done on April 16 looked clean. Praise god! Dr thinks a consolidation round would set her back even more so they are pressing to speed up the transplant. Going next Wednesday and Thursday for the pre transplant testing. Hope to transplant end of may maybe. Has a bad rash all over her and a biopsy at vandy didn't show anything. Just side effects. It's looking a little better now. Legs and feet are swelled bad. Other than that everything good. Lol. The ups and down of aml. Thanks for listening.

Shane

Shane,
I'm day 105 post transplant. Hayley is in excellent hands. The Vandy transplant team is always a step ahead. The Doctors rotate, but they are all excellent, same with the Nurse Practitoner. My primary NP was Sara, I feel like I lost a friend since I've not talked to her in a week. I hope Hayley's experience is as positive as mine. If I can answer any questions from personal experience just let me know.

Trish

Thanks Trish. We are so glad you are doing good. Yes, we feel she is in great hands. Everything has been a great experience so far. Dr Mohan is her main Dr but even in the hospital we saw many drs and all seemed great. How long did you stay in the transplant area before going to one of the apartments they have told us about? Thx

Shane -- thanks for keeping us up on things. I am chemo only so will not be able to help with any GvHD issues, but MOST of the survivors (as opposed to victims sill in treatment) on this list are transplant patients, so I am sure that they can help you out if she runs into any issues. We are praying for you and great to see things developing positively, Take care -- dave

Shane,

I got an apartment on Dec 31st. My 1st appointment was Jan1 and I started chemo the following day in the clinic. I was admitted on jan 8th (I did the GVHD trial of a drug called AFG) then transplanted on the 11th. I had the apartment from Dec 31- April 22nd. It was great! We chose the Village at Vanderbilt. My Dad stayed with me most of the time and we made it with a 1bedroom (twin beds). It's so close to the Hospital you can walk and I did well enough that my Dad stayed nights at the apartment and walked over in the mornings. It does have better TV then the Hospital.

Trish