My daughters beautiful tribute to her father
 

Dear All,
In October 2013 my husband was diagnosed with high risk MDS with complex cytogenetics and underwent MUD transplant in February of this year. Unfortunately only 1 month after transplant he was found to have persistent disease and his course has been complicated by severe acute GVHD involving 100% of his skin which has required high dose immunosuppressants and now additionally is battling hemorrhagic cystits with BK virus. The support from family and friends as well as those on this forum has been invaluable during this arduous journey.
At the beginning of this ordeal our daughter, Janna, wrote a song and video to inspire her Dad called "Kick It In," which originated from his marathon running days when she was a little girl waiting for him at the finish line to yell, "Kick It In." She posted it on the MDS Foundation Website, who noticed it and contacted her about it. Apparently, the MDS Foundation is having a Walk/Run benefit in September in NYC to raise money for MDS research and they invited her to attend with her band to perform at the benefit. If he is well enough, of course, he will be there too.
We each find our own ways to help loved ones in times of need. For our daughter among other things she has written an album dedicated to her Dad and hopes to raise awareness and funds for MDS research. This has also has allowed her to help when many times she feels helpless as he deals with the complications of the transplant. The album is entitled "The Show Must Go On," and can be purchased for any amount.... with all proceeds going to the MDS Foundation towards research.

Below is the link (which I am hoping you can clock on it or cut and paste to your browser) to our daughter’s MDS-inspired Album "The Show Must Go On" which includes the song “Kick It In” written just prior to and the song “Dedicated” written shortly after my husbands transplant. If you wish to make a donation to support MDS research click on the “presentproductions” link below, and then the Show Must Go On album, or the Donate Today button, which will take you to the songs where you can click “Buy Now” name your price which will allow you to get the album while donating to the MDS foundation. After you place your order, you will receive the album by separate e-mail from BandCamp to download. Again, all proceeds go to MDS Foundation.


www.presentproductionsmusic.com


If you would like to send it to others who you think might want to help out, (or simply anyone else you know who has been affected by cancer and would enjoy and appreciate the music) by all means do so. For those living in the U.S. the contributions are fully tax deductible.

Many Miracles and Much Strength to all those battling this disease

Wife of Diver Down

I know this response is a little off topic, but are they giving your husband cidofavir washes to try and help with the BK Virus? It is supposed to be pretty effective within a few treatments.

tribute
 

What a beautiful tribute! I look forward to listening to the songs.

re-BK Virus and re- thank you
 

Hello Dan- There was discussion of Cidovafir but more as last resort if conservative measures failed due to it's potential adverse effects. So far he is being managed with red cell and platelet support and increased fluid/hydration to maintain good urine flow to void clots. His urine has improved considerably. The next step will be to cautiously lower his steroids further - likely next week while monitoring the GVH.

Chad
I hope you enjoyed the music - The song "Dedication" truly embodies her love.

We count our blessings every day as slowly we inch forward in a positive direction

So glad to hear that he is improving. I have been fighting off the BK virus for about 60 days now myself, though the symptoms kind of ebb and flow.