Sandra,

Planxty has a good idea! We should celebrate many mini-birthdays. For anyone reading this, please post your 100th day birthday, so we can all send birthday wishes.

Ben, hope you are doing well. Happy mini-BD!

CLiff

Ben - Happy mini birthday.
Waking up looking in the mirror is cause for my personal celebration. The cake top for me is when my kids bounce down the steps and say ," hi, mom, good morning, how are you today" makes every day special.

Peace,
Andrea

Andrea,

Every word you say make me smile. You have a wonderful family, and that for sure will accelerate your return to the Land of the Healthy.

Cliff

THIS IS A GREAT IDEA -- we need one thread where everyone checks in let's say every three months (thats a little over 100 days, but whose counting) -- check in every three months and give a short report maybe giving us all a quick rundown of what they went through and where they are right now on things (e.g., for transplant types how their GvHD is coming along). If enough people like this idea then we can set up a separate thread for it -- perhaps call it the 120 day check-in. That would be a great way for us to keep track of what is working and how it is working. What do you all think? -- dave

Planxty,
thanks for remembering Ben's 100 days. It's a milestone, for sure.

In general, Ben is doing well.

We hold our breath until we get those liver biopsy results.


Keeping everything balanced is an issue, I mean the sugars, the magnesium, potassium and all the other level. I never knew all these levels could have such a profound effect on our bodies
. He gets really, really tired, but not as exhausted as the first few weeks post transplant. He's lost a lot of weight, but we took Cliff's advice about stocking up on food to keep his body strong. so he ate like a ravenous pig before the transplant. Great advice!
Ben is on the ball memory wise. He does a lot of crosswords and sudoko i think that helps. I can't get him to post here with the group,maybe in the future ! Cliff, can the all the treatments affect the hearing.? Ben won't admit to it, but I think he doesn't hear as well as he used to.
We are thankful for our Faith in the Lord. I can only say without
Him we would not make it through each day.

,Andrea,

Your sentiments also make me smile, it's the "little" things we take for granted that mean so much. Thanks!
Cliff and Dave,
The 100 day celebs are a great idea.! Other peoples experiences during that time, would be a help to others going through this journey.
Dave,
Your music is uplifting! You sing great! Thanks for all you do to make our lives better.
Once again, thanks for remembering my dear Ben, you made him smile.
Love and prayers for ALL,
Sandra.
Romans 8:28 "And we know that all things work together for good to them that love God, to them who are called according to his purpose.

Dave,

I like your idea of the check-in, but I think that I would not be able to tolerate not hearing from those of us who are in the thick of recovery. Once the rest of our gang are fine, we can all take deep breaths and relax a bit. We need to get those mini-birthday dates so we can be ready to congratulate (+/- harass) those of us getting old with mini-birthdays.

Cliff

Cliff,

It seems you are right about the infection making his liver enzymes shhot up.

It is inconclusive whether it is a touch of ghvd or just the infection he had at the time of the biopsy. Soo....... They are tapering the prednisone down to see how Ben's liver reacts. (That seems like a good thing because of the sugar levels being high) The doctor says voricanizole can also be hard on the liver. They say as soon as Ben's hemoglobin hits 135 they will take some of his blood because of iron overload. What do you think of all that?
Ben otherwise is doing well.! His big concern is lack of muscle,on his legs, did you have that problem?
Blessings to you and yours.

Sandra and Ben

Hi Sandra/Ben,
Interestingly, my liver enzyme jumped and they took me off voriconizole and put me on micofungal drip to see if it changes. I will get conts done again Thirsday morning. My doc was pretty confident it wasn't GvHD, I suppose they just need to look at every possibility.
It appears post transplant, it becomes a delicate balance of drug effect vs. possible GvHD.
Praying thait all works itself out.
Peace, love and hope always,
Andrea

Cliff -- I agree -- then what do we do? -- all just report in every three months after our last treatment and give a little report -- and then everyone else can give them a birthday party. That would work. We need to keep the survivors reporting in. I hate to lost track of them, and we need them all reading and helping others. Every survivor is different and has something that s/he can help with that no one else can. This would be a good way to keep everyone in touch. What do you think -- should we set up a new thread just for this? -- dave

Sarah and Ben,

I was on Voriconazole at one point in my treatments, but didn't get abnormal liver tests from it. Any drug can do just about anything. With regard to the hearing issue, my hearing is not the best and I was certain it worsened with treatment. However, I think it is now back to its bad baseline! Don't worry about things like this. Keep the blinders on so that you see straight ahead with your eyes on the prize. Sounds trite, but it is so very true.

Love,
Cliff

Sandra:

Thanks for the kind words. I have never given a performance or anything like that. The only singing I do in public is congregational singing at chuch, and that is just along with the congregation, no solos. It's just a fun thing that I do. I am thinking about setting up a special page on UncleDavesJukebox.com just for inspirational music dedicated to leukemia victims and their care givers. I am working on "When You Walk Through a Storm" now. I put a button for contributions to the Leukemia & Lymphoma Society if anyone is inclined to give. It is not an ad -- like the one to the right, which I would guess generates some funding for Daily Strength (cannot complain about that). My link is just a free link to them. I have no interest in making money off the site ... in fact, I would expect if I did it would be a nightmare with all of the copyrights on songs and all of that. Its just for fun and maybe to give someone hope and pleasure from a survivor. Thanks again for your encouragement -- dave

Cliff,
YOU ARE RIGHT! i needed to"hear" that from you. All the little things that crop up,take my (Not Ben''s) eye off the PRIZE.thanks Cliff.

The hearing thing seems to come and go. Selective maybe"(smile)
I'm asking Ben what veggies he wants for dinner and he replies "That's a great idea. we can do that tomorrow" I can laugh or get frustrated,
Shalom to you and yours,

Sandra and Ben p.s. I love you called me Sarah it has always a favourite name of mine)

Dave,
I am sure you idea of inspirational music for leukemia patients and their families' will be an encouragement . For sure, the;RIGHT nusic can reach the heart.
You certainly have a labour of love, with your UncleDaves jukebox site.
Until Ben got aml.we all had no clue about leukemia. It gives most people affected by it, a chance to REALLY LIVE and not take anything for granted.
The donation idea is great, Many families young and old are not able to keep up financially, because of this disease.You are a blessing brother!
"You'll never walk alone" is a beautiful song.It reminds me of Liverpool, England, where I was born.

Blessings to you and yours brother,
Sandra and Ben.

Dave,

I don't know whether its coincidental or God talking. But that song "you never walk alone" was my uncles favourite song. He loved musicals and this is from carousel. He was closer than a father to me and I nursed him until his death with pancreatic cancer. This song was sung at his funeral. During my induction chemo one Saturday I was very ill and my husband turned on the tv in my hospital room to take my mind off the sickness, at that moment the musical carousel came on. I always believed it was my uncle taking to me.

I am so happy that you are working on this song.
You rock dave

Sandra,
I hope Ben is holding his own a getting over the bumps on the road. Are you still in the uk I'm in the south of Ireland
Planxty xxxx

Sandra, Ben, Planxty, Lily and everyone -- thanks so much for your encouragement -- you really lit a fire under me. I was working on some other songs as well, but I am going to drop them now and get "You Never Walk Alone" up as soon as I can. It takes a while because I am not that good. I also plan to put all of the more inspirational songs on a separate page for the victims of cancer in general and leukemia in particular. Hopefully music can help in a time of need to comfort and give hope. Thanks again -- you do not know how much it means to me. I will be in touch -- dave