The Greginator

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Thanks for stopping by!  Gregory came tumbling into our world on June 24, 2005.  February 25, 2009, at the tender age of three, he was diagnosed with  Juvenile Myelomonocytic Leukemia.  JMML is a cancer of the blood. Affecting the production of healthy platelets, red cells and white cells. Our Odyssey began on February 23rd, 2009, when he was admitted for flu symptoms and dehydration. Gregory’s only course of treatment is a Bone Marrow Transplant, also known as a Hemotopoietic Stem Cell Transplant (HSCT).  On April 21st, 2009 we received that magic phone call, notifying us of a perfect 10/10 transplant match.  We arrived in Seattle on Monday, May 11. We spent May 11, through October 11, 2009 in Seattle, WA under the care of Seattle Cancer Care Alliance (SCCA). We were admitted to Seattle Children’s on Monday June 1, to begin pre-transplant conditioning.  (AKA:  Heavy Duty Chemo).  Gregory’s transplant began at 4:10am on Thursday June 11, 2009.  We were discharged after nine long/short weeks.  We were out-patient in Seattle and hoped to be HomeHome by the end of September.  After a minor set-back, we were able to return to the Spokane area on Sunday, October 11.  Gregory and I lived at our family’s place on the water, from October of 2009, until mid August of 2010. In order to protect is very fragile immune system, we felt it safer to live away from the elementary aged siblings.

Gregory is still undergoing treatment for Graft Versus Host and this could continue for years to come.  Trying to teach his new Immune System to not destroy his body.

May 6, 2012 *Update*

Gregory has been able to wean off all of his GVHD medications and currently is only on hydrocortisone for adrenal insufficiency, calcium and vitamin D for osteopenia and his daily vitamin/fluoride!

He does have cataracts from two years of Prednisone, but we are currently simply monitoring them. His immune system has yet to reach full function. His marrow is not producing sufficient antibodies. At this point he is receiving donor antibodies, IVIgG, every four weeks. This lack of antibodies also means that he cannot be re-vaccinated, which leaves him at risk of contracting illnesses that are avoidable through vaccination. We know not if his body will catch up, we are just taking it day-to-day.

He enters our public elementary Montessori program this September. Which is an amazing accomplishment. It brings it’s fair share of anxiety. First grade with 450+ kiddos in the school. *whew* That’s a lot of germs!

The last week of April, 2012, The OffSpring and I traveled to NYC to participate in Gregory’s donor center, DKMS Americas, annual fundraising gala.The highlight of this annual event is a first time meeting between a DKMS bone marrow donor and his/her recipient. Gregory and his donor were chosen for this year’s donor/recipient pair. Here is a little video of our first meeting:

After three years of wondering who this anonymous life-saving donor was, we now have a name, face and new family member. Katie is her name and these pictures are of the two of them together. We love you Katie!!!

Thank you to everyone who has/will touch our lives.  Every one of you will forever be a part of our family’s history.

This video covers the time period between February 2009 through September 2009.

The Odyssey Thus Far from MindiTheMagnificent on Vimeo.

7 Responses to The Greginator

  1. Hi Mindy!

    My name is Stacie Eichinger and I am walking across America for Beads of Courage! I am staying with Patty Hubert for the next two nights and she told me about your son. I would LOVE to give him one of the shoe beads I am carrying on my Walk. If you want to send me your address, I would gladly do that. 🙂

    • Jaqueline says:

      Steph & Manny – You two truly have a talent with the carmea. You both went above and beyond what we expected. And not only that but we had a blast! You guys made us feel so comfortable and relaxed. Thank you so much. We definitely know who we are going to use for engagement/wedding pictures.

    • Kelly,My heart aches for you and your mums predicament. I know only too well the pain of having someone with this exact disease. I had twin daughters and 1 got this hideous disease at just 28mths old. After 3yrs of treatment she relapsed & a bone marrow transplant from her twin was ordered. Alas, we were too late. Her disease was too advanced for a transplant to work. I urge everyone to register on the bone marrow donor list. Time is of the essence and people need our help. Thinking of you and your mumLove Jennifer.

      • Natascha says:

        Story telling is an inehnert part of the human experience. It is how things have been passed from generation to generation and will always play a major role in our lives. The quote in this post is amazing and a good tip for any organization trying to fundraise. The donor is the hero!

    • Carlos says:

      So amazing! My husnabd‘s brother had leukemia as a child so I’ve thought about how it would be if it were one of my kids, too. It’s heartbreaking to think about the parents of this child and how they must feel. This is an amazing opportunity for both of you and an inspiring read for me.

    • Hey, killer job on that one you guys!

    • If I were a Teenage Mutant Ninja Turtle, now I’d say “Kowabunga, dude!”

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