David's Story

On June 24, 2008 our 16 year old son David went with his dad Gene to his first blood drive sponsored by the American Red Cross. The law in Wisconsin had changed in 2008 allowing 16 year olds to be blood donors and David would have been the first of his age.  His dad has been a volunteer blood/platelet donor for 32 years and has also helped to save cancer patients by growing stem cells and granulocytes for them.  David wanted emulate his dad’s public service and start to help save lives himself.  He was told the day of the drive that he was unable to donate because he was anemic which had been determined through a preliminary blood screening and that he should try again in a month.  I was a bit surprised but not overly alarmed.  He’s a teenager and doesn’t always eat right but he had been having headaches and recent dizziness so I took him to the doctor.  Long story short he was diagnosed with MDS, a form of bone marrow cancer rare in children and his only treatment option was to have a life threatening bone marrow transplant.

My husband, daughter and I were tested immediately as possible donors.  Criteria of 10 proteins in your DNA are typed for the match. We were all only half matches and unfortunately David inherited a rare protein from me making it difficult to find an unrelated donor.  A global search was done for months and out of 11,000,000 people on the bone marrow registry worldwide none were a match.  I thought that 11,000,000 was a lot to pick from but there are 6.7 BILLION people in the world.  Only 3 0ut of 10 people ever find a suitable donor.  We held our own bone marrow registry with the help of DKMSamericas.org (bone marrow registry) and the Dan Jansen Foundation (Dan, Olympic speed skater, is family friend) trying to find the needle in the haystack for David or maybe for someone else waiting.  David’s doctor was adamant about using me as a donor even though I am only a half match. He were concerned that his disease would stop smoldering and start progressing. He reasoned that I have the rare protein that they couldn’t match, we already have blood, cell, and tissue compatibility (I carried him in the womb), I’m nearby if he needs more marrow and in studies mothers have done very well as donors even if they are not a perfect match. In preparation for being David’s donor and caring for him for several months at the hospital I started my” to-do-list”, haircut, dentist, yearly mammogram.  Long story short again…I was diagnosed with breast cancer and could no longer be David’s donor. I was devastated! Not because of my diagnosis but because I could not be David's donor. David went to save a life by going to that blood drive and ended up saving his own life and now mine.  We have been truly “twice blessed”.  

By the grace of God a donor was found a couple of months after my diagnosis and David had his transplant on February 20th, 2009.  We spent several months in the hospital with him.  Since David’s donor has to remain anonymous for a year I named him “Earl” the night of his transplant until we can meet. We all look forward with great anticipation to the day when David and "Earl" can meet. He is a HERO! 

There is so much fear of the unknown with a transplant.  David is doing well and so am I as my husband and I continue to care for him at home and I go through treatment…six months of chemo, 33 rounds of radiation.  David and I are bald together!!!!  We both still have a long road ahead of us, especially David but we remain positive and continue to LIVESTRONG! 

In October of 2009, eight months after David's transplant he was admitted to Children's Hospital to have his gallbladder removed. He was also due for another bone marrow biopsy which is done every couple of months to keep an eye on his disease.  As long as he was going to be put under anesthia for the surgery the biopsy was scheduled as well. The results revealed that 15% of his disease was back which was very disappointing and scary. It was decided to try a couple of rounds of chemo therapy, a couple of months apart.  The chemo drug that he was given was specifically for his type of cancer.  His doctors wanted to try the chemo first before giving him some of his frozen donor cells.  It is very dangerous to give donor cells post ransplant because the doctors are not sure how many to give the patient. Too few and the disease can spread. Too many and the patients can reject the cells and end up with graft versus host disease (rejection) which can affect the skin, lungs or  GI system and cause death.

David had a round of chemo in November and again in the beginning of January, 2010. The results were great. The chemo knocked out the bad cells that were in his marrow but he still had some of his own T-cells left and those are the fighters and could push "Earl" his donor cells out.  His doctors decided to give him some of his donor cells to push the T-cells out.  Today, May 3rd, 2010, David had his 15th bone marrow biopsy to see if "Earl" (the name that I gave his donor the night of David's transplant) kicked butt! We'll know the results by the end of the week.  The waiting is tortuous!  David and his donor...real name, Ben Walker of Tampa were put in touch with each in March.  The identity of the donor and recipient remain anonymous until a year after tranplant.  We will all be meeting for the first time at David's Donors Drive on June 5th and he'll be at his high school graduation the next day.  What a glorious weekend it will be for all of us.  We'll be meeting our HERO!!!!  The man who saved David's life.

Thank you "EARL"...we love you.

Today is May 6th, 2010. We got a call fom David's doctor. David had a bone marow biopsy on Monday.  His cancer is back and he will be starting chemotherapy on Monday. UNFAIR!!!!!!!!!!!!!!!!!!!!!!  We are more determined than ever as a family to inspire as many people as possible to get registered as a possible bone marrow donor.  All it takes is a simple swab of the cheek.