Monday, July 16, 2012

Happy Day +100 Dearest Donor...

Today is another huge milestone for Jacob's recovery.  It's usually evident by this point whether or not a transplant was successful.  Each day we can breathe a teensy bit easier hoping that Jacob is actually successfully cured.  Of course, it can still take a year, some times up to two years, for his new immune system to mature enough to fight off germs properly.  But each day from here on out makes it more likely that he will hold onto his new marrow.  For now, we have to keep him away from crowds and other potentially germy places.

We aren't allowed to meet our donor until one year post transplant, and only if she is interested.  However, we can send her a note as long as it doesn't reveal personal information about us.  This is what we are sending to her:

Dearest Donor,
It has been 100 days since our precious little boy was infused with your life-saving bone marrow.  Your cells are happily engrafted and already working miracles for him.  Our gratitude is beyond expression for your generous donation and sacrifice.  There is no greater gift that a parent can imagine than to give their little child a chance at a rich and full life, and now thanks to you, he will have that gift.  My husband, other son, nor myself, were matches.  We are filled to the brim with appreciation and love for you for giving our son what we couldn't give him.  My husband and I are registered bone marrow donors, and we hope that we will one day be able to pay forward this beautiful, heroic gift of life that you have given to our family.  You are our hero!  We'd love to get in touch with you as soon as it is allowed.
Love,
Our Grateful Family

We are still scheduled to be discharged tomorrow.  Jacob's adenovirus result from Friday came back at 40,000, down from 450,000 last Monday.  We will get another viral load update this evening.  He gets another dose of cidofovir for the adeno tomorrow morning before discharge.  Details of our return to California are still being worked out.  Jacob's doctor here (Dr. Carpenter) needs to contact our doctor at home (Dr. Cheng) to see if he will be comfortable taking on everything that Jacob is still being treated and monitored for (adenvo, hypertension, ebv, c diff, gvhd, etc...)  Then he will contact the out patient doctor (Dr. Delaney) to give her his recommendation based on what Dr. Cheng wants to do.  So, there are still a lot of details to work out, but it will work out.  

7 comments:

Lindsey said...

Hooray!! Brought me to tears! I am so happy for Jacob and your family!!

Janice said...

That brought me to tears too. I'm celebrating in your joy today and am grateful for the thoughtful and loving people who willing give of themselves to benefit others. I hope your family is reunited very soon.

Alice said...

Congratulations!!! What a wonderful milestone and a little sigh of relief as J is headed towards complete healing. I am rejoicing with you today. Hope you guys get to go home soon!

Christine Blair said...

Bless the Lord oh my soul, worship His holy name.Sing like never before, oh my soul, I worship your holy name.This is ten thousand reasons to rejoice!

Trisha said...

It WILL work out! Happy Day +100 Jacob!!!!

Jean Arnott said...

Rejoice! Though we try, we cannot appreciate the value of something until we risk losing it. Thank you for allowing us to share, in a tiny way, your heart’s journey. It has blessed and changed our lives. Our prayers of gratitude and for continued progress will continue.

Unknown said...

Dear sweet Long family, Your difficult journey has helped me to remember better what really matters in life. Everyday is a precious gift from our Father in Heaven. A day to be kind, compassionate, giving, and grateful. Your journey has inspired our family to become registered bone marrow donors. (There are 8 of us!) What a sweet letter you wrote to Jacob's donor. I hope that your returning to California to join your husband and son comes quickly and goes perfectly for J. Thanks again for sharing Jacob's story. He is truly a miracle!

Love,
Delanie McKendrick
(Temple City Ward)