Shane,

I just read your post and am truly saddened by Hayley's Dad's passing. This has to be devastating for her and you and I hope that the prospect of her own return to health will bring Hayley some solace.

Cliff

Quick update. We have been at Vandy a week. Hayley has had 2 treatments of cytoxan and her first 2 radiation treatments done. Two more on Tuesday and Wednesday and transplant Thursday. Her donor is a 48 year old female with one child we did find out.

Shane

Shane: Sounds like things are falling in place. We are all praying for Haley. At her age she should do just fine, and she is in the best of hands. Please keep us up on how she is doing -- dave

Shane,

I love the good news. Hayley has already been through the worst and it is all up from here. She will slide through the transplant as if she were on a toboggan and I am just thrilled that things are moving along. Give her my love. I think that her Dad is smiling down on her right now.

Cliff

Shane,
Glad things are going good now. I am praying for smooth sailing through transplant.
Peace,
Andrea

Shane you and Haley will be in my thoughts and prayers tomorrow as she receives her transplant.

Blessings,

lily

Hello all. Hayley's transplant went as planned on June 27th. Today is day +13. Everything has gone perfect other than the mucositis. It's pretty bad. She hasn't eaten or drank anything 8 days. Had a few ice chips and a tiny bit of popcicle the last 2 days. Couple of little fevers but cultures show nothing. WBC still at .1. She has had to have a good bit of insulin. Thanks for all of the encouraging words. I can't name everyone but we have been thinking of you all. And to all of the new folks reading and joining in just keep your head up join the battle.

Thanks
Shane

Hi, Shane -

It is so good to hear from you. Very glad to know that things are going well for Hayley - I am sorry for her pain with the mouth sores, though. That just sounds extremely uncomfortable. Hope they will clear up asap and that engraftment and all that good stuff comes together without a hitch. You sound like a wonderfully supportive husband. Continued good wishes for you and Hayley both!

Robin

Shane -- we are praying for Hayley -- these bumps in the road are fairly well expected. When that marrow kicks in an starts producing some good blood improvement will be dramatic -- at this point perhaps a transfusion would help -- but I am sure they are considering that, if they have not done it already. Take care and be sure to get some good rest yourself. -- dave

Just wanted to say hello and give an update on Hayley. It's day 22 and still in the hospital. 4 days ago the white count started moving and she started eating a tiny bit and drinking some and we were shooting at getting to the apartment today. Her white count had gotten to 3.8, was 2.7 today. Getting platelets every day, 2 yesterday. The mucasitus is better but mouth and throat still hurting and she quit trying to eat and drink a couple of days ago. They scoped both ends of her today to see what's up. Is it GVHD, fungus, infection? Just not sure at the moment but dr that did the procedures said she had lots of ulcers. Real bad at the end of the esophagus. That's what was causing the severe pain when trying to eat. Lots of ulcerations in stomach area and colon area. Giving her anti fungal meds and anti acid meds and just waiting. Her pain and nausea meds are making her talk out of her head bad still so they keep tweaking them. Just one of those speed bumps but its hard seeing her this way. Emotionally she is a wreck right now but it's going to get better.

Shane,

I am sorry that Hayley is experiencing some speed bumps along the road to recovery. May I ask if she received total body radiation prior to her transplant (you may already have discussed her conditioning, but I haven't been on the site that much lately because of sad family issues). I had TBI before my transplant, and even though they gave me a medication (I forgot the name) and I had no mouth sores. Sadly, the medication does not help the throat or esophageal sores and I got to the point that I had to get TPN (total parenteral nutrition). I only got that for at most a week and, although I wasn't eating, finagled my way to discharge and slowly improved out of the hospital. Those throat and esophageal sores are really bad, and it sometimes pays to take some painkiller (I had the self-administered IV type) before attempting to eat.

The bottom line, is that Hayley will get over this soon. Do not worry about the fluctuating cell counts. It goes with the territory as virtually everyone on this site can attest. I will be praying for her (but with you around, she won't need it). She will be FINE. Just keep having her repeat that to herself, because it is 100% true. She needs to focus on her upcoming good health...in fact, to truly picture herself somewhere, doing something that she loves to do. That got me through (and gets me through the dentist without xylocaine or sedation) and got me through all of the tortures of AML. She is at the summit of the hill of annoyances, and now, except for a few moguls, her trip down the other side will be exhilarating.

Love to both of you,

Cliff

Thanks Cliff, your words always ease the worry. Yes she had the full body radiation treatment. She was on tpn for close to 2 weeks but took her off when it looked like she was about to start to eat so they are going to start it back until she does.

Shane,

Don't worry. The aftermath of the radiation was the only time during my hospitalization that I could not eat and was in pain. Now I remember the name of the drug they gave me for the mouth sores....Palifermin. It gave me an awful feeling in the mouth, but protected it from sores. As I said, the throat and esophagus were another story...very bad. But like the rest of the tortures, they it resolved and now I feel fine. Hayley may also have an alteration in her perception of taste. Things tasted very off for quite a few months, and all that tasted good were grapefruits and ice cream (maybe I was pregnant!). My sense of taste is now totally restored, so if Hayley tells you that she too has had a taste change, tell her it will go away slowly. These are all only "speed bumps," and Hayley should always keep her "eyes on the prize."

Enjoy the weekend.

Cliff

Hi, Shane -

I just wanted to say that I am sorry that Hayley is suffering so much from the sores, etc. I know that it is very hard on you to see her struggle, especially as she has already been through so much. I am so glad that Cliff was able to offer such reassurance. His own example gives all of us a lot of hope that these toughest days will be behind us eventually, and that a return to good health and living well are absolutely possible. Wishing Hayley relief from her pain both of you every comfort as her recovery progresses!

Robin

Shane,

my love and support and with you and Haley now. I have throat sores and am in the middle of BMT. It sucks, but listen to Cliff. I can only pray and know this will all be over someday. I know it will. Haley and I will be on our own couches emailing away.

Ed