Death of a Superhero

A Family's Story about Courage, Bravery and the Defining Moments of LOVE

Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.

This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.

He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.

People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.

Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.

Wednesday, February 4, 2009

Bone Marrow Basics 101

(By the way......I would have NEVER passed this class in highschool. Unfortunately now - I'd get an A++. I wouldn't have thought in a million years that this would become one of my specialties.) Bummer......but I'm sucking it up.

So the bone marrow lowdown - don't be frightened, it's alot to take in - but it's all good and it's going to save Hunter's life. Obviously we're pretty happy about that!

OK - I'll start with the basics. (Lots of this info was found online).

Hunter has AML Leukemia. For those that aren't really aware of what exactly that is - I found a pretty simple definition.

Leukemia is a cancer of the white blood cells. It begins with one abnormal cell that begins to continuously replicate (clone) itself. The resulting leukemic cloned cells do not function normally. They do not fight infections and, as they build up, they inhibit the production of other White Blood Cells, Red Blood Cells and Platelets. Patients with leukemia may have frequent infections, fatigue, bleeding, bruising, anemia, night sweats, and bone and joint pain.

Below is an image of one type of AML Leukemia. The purple cells are the ones that are replicating and taking over. I refer to them as little shit heads.

So Hunter's Leukemia was found in his Bone Marrow when they did a Bone Marrow Aspirate.

Now what exactly is Bone Marrow?

Bone marrow is the flexible tissue found in the hollow interior of bones. It's a special, spongy, fatty tissue that houses stem cells, located inside a few large bones. These stem cells transform themselves into white and red blood cells and platelets, essential for immunity and circulation. Leukemia can compromise the resilience of bone marrow. Bone marrow transplants are a growing treatment for these conditions that can't be otherwise cured.

Believe it or not........there is a sandwich shop here in Portland that actually has a Bone Marrow sandwich on the menu. We've asked the doctors if we could just have Hunter eat this a few times a week for the rest of his life and skip the transplant. They wouldn't go for it. Go figure.

Below is a basic image of Bone Marrow. It's actually Wilma's bone from the Fred Flinstone website. Who knew she had Leukemia? hee hee

So now Hunter's Bone Marrow is infected with Leukemia and it's no longer doing it's job and therefore he has to get someone else's Bone Marrow to come in and take over. Hence the Bone Marrow Transplant.

Harvesting the Bone Marrow (retrieving it from the donor)

The procedure is minimally invasive and does not require stitches afterwards. Depending on the donors health and reaction to the procedure, the actual harvesting can be an outpatient procedure or requiring 1-2 days of recovery in the hospital. The stem cells are harvested directly from the red marrow in the crest of the ilium, often under general anesthesia.

They are then basically stuffed in a bag and immediately sent off to be transfused into Hunter.

Below is a photo of Bone Marrow being retrieved from the donor.

So to throw another link in the chain. Cord blood may also be used for a transplant. In Hunter's case, when they searched the 7 to 11 million donor database, there were more matches for him that were cord blood options rather than actual donors. Extensive testing is now being done on the 4 possible units that matched and we will know in about 1 to 2 weeks if they are matched good enough to go into our little man's body.

Hunter giving himself oxygen. All fun and games around here.

We are still actively searching for a perfect match just in case these 4 don't pan out. So all of our friends that have come forward and have asked what and how do they get on the list.......this next bit of info is for you. (Unfortunately our family is not a viable option for Hunter, so therefore they are sadly ruled out).

Our lovely friend Jennifer Gendron is going to do a Bone Marrow drive at Cedars Sinai. It is now currently being organized and the exact info is not yet available. I will post it when it's all set and ready to go. According to the info we've gathered so far, there is a small fee for Caucasians, but ethnic individuals are free! Which in Hunter's case, ethnics have a higher chance of being a match than Caucasians because of his mixed background. But we were told that "surprises" do happen and you just never know.

If you'd like to skip the drive and go on your own time - please visit the site - and on the very first page there is a link on how to become a donor. The very important part is that when you go to get tested YOU NEED TO HAVE A SET OF THE RESULTS SENT DIRECTLY TO YOU. Then you need to immediately fax them to me and I will rush them to our Bone Marrow Coordinator. She will be able to compare the results and inform us if you are a match or not. Time is of the essence so the sooner you do this the better. Please feel free to email or call me with any questions whatsoever. You are trying to help save my sons life - so I'll take the call!!!!!

And, on a side note, we are soooo not offended if you don't want to do it anymore based on the information in this post. (You're just taken off the list and won't be invited to our Christmas party). Hee hee. Just kidding. Seriously.

Below is some more quick info that is helpful is seeing exactly what you are signing up for.

Myths and Facts about donating your Bone Marrow.
(info found on

The bone marrow donation procedure is painful.

General or regional anesthesia is always used for this procedure. Donors feel no needle injections and no pain during marrow donation.

All bone marrow donations involve surgery.

The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If marrow is requested, it is a surgical procedure, usually outpatient.

Pieces of bone are removed from the donor.

Pieces of bone are not removed from the donor in either type of donation.

Donating bone marrow is dangerous and weakens the donor.

Though no medical procedure is without risk, there are rarely any long-term effects from donating. Only five percent or less of a donor's marrow is needed to save a life. After donation, the body replaces the donated marrow within four to six weeks.

The National Marrow Donor Program screens all donors carefully before they donate to ensure they are healthy and the procedure is safe for them. The NMDP also educates donors, answers questions every step of the way and follows up with donors after donation.

Bone marrow donation involves a lengthy recovery process.

Due to taking the drug filgrastim, PBSC donors may have symptoms such as headache, bone or muscle pain, nausea, insomnia or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the donor is back to normal.

Marrow donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking. Marrow donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.

Donors have to pay for the donation procedure.

Donors never pay for donating. All medical costs are paid by the patient's medical insurance or by the patient, sometimes with NMDP assistance. The NMDP reimburses donors for travel costs, and may reimburse other costs on a case-by-case basis.

A quick video on getting ready for a transplant.
Bone Marrow Transplant

1 comment:

MKPatrick said...

Dear Lenore,
Thank you for the Bone Marrow Basics. Both Matthew and I are part of that 7-11 million in the database. I'm sure one of those 4 will do the magic!
Sending those good vibes and lots of love and light your way to you, Zen and Hunter.
Mary Kay, Matthew, Luke & Amelia