The Be The Match Marrow-thon is a national campaign from June 8 – 22, 2009, building awareness of the marrow registry and offering an opportunity to join the registry without cost(FREE) to new registrants.
Thousands of critically ill patients search the registry every day hoping to find a generous donor willing to donate healthy blood-forming cells. Today, local patients Victor, Javier, Sean, Nick, Dylan and Matt are all looking for matched donors to help them survive leukemia. Jared, Michelle, Dominic, Noel, and Erica have all survived their diseases because of generous strangers who donated for them. There is a special need for registrants with minority ethnicities.
If you – or friends and family - are interested in joining the registry without cost to you, here’s how and where you can sign up from June 8-22, 2009:
Designated BloodSource centers in Davis, Elk Grove, Citrus Heights, Roseville, Chico, Redding and Merced
Online at www.bethematch.org, with the promo code BloodSource09 and a swabbing kit will be sent to your home.
Joining the registry is easy as 1, 2, 3 and involves:
1.Making a good faith commitment to donate marrow or blood stem cells if you are a match and to keep your contact information updated
2.Completing paperwork
3.Swabbing the inside of the cheek for tissue-typing (if you sign up online, a swabbing kit will be sent to your home)
The Marrowthon is also a good opportunity to share information about other ways to help patients, such as blood donation and blood component donations. Most people in need of marrow transplants are also using blood products. More information is available at www.bloodsource.org or www.bethematch.org.
You could BE THE MATCH to give someone a second chance at life. Join today.
I love being a mom. It has made me appreciate my mom so much more. There is a lot to be said for my journey into motherhood . . . it came hard and fast and it didn't follow the norm. But neither did my mom's journey into nanahood. I can only imagine what becoming a grandmother is like by the way my mom's face lights up when she sees Erica. My mom had only weeks of pure bliss before she was in pure fear, it was double duty for her . . . when Erica was diagnosed she was taking care of me (being the best mom she could be) and taking care of her new grand-baby. So much of how Bob and I got through the roughest patches was because of how my mom made it all possible. I have tears in my eyes right now because there just aren't enough words to convey the care and support that my mom gave to us.
What I remember most is waking up on the hospital room floor; I could always tell when she was walking in through the double doors . . . she was quite and careful, she would wash up and put on her smock and then peak in to see if I was awake and ready for my coffee (that she had just picked up at Starbucks). Then we would talk about the night's activities and how Erica was doing.
For Erica, it was then, as it is now . . . Nana represents FUN! Even in the hospital, Nana would be the first to open a game or toys and proceed to do the very opposite of what the directions would say, like . . . put the crayons on your fingers and sing "where is pointer?" or make up a song about way the cow is pink . . . you see where I am going with this? For me, my mom represented ENERGY, energy that I didn't have at the time. She infused the room with love and vitality.
Nana still comes over two days per week and she does the same here at our home, only now, I think it is how she imagined it always would be . . . thank the Dear Lord! My mom still "takes care of me" and I realize now that moms just do that, no matter how old their children are. I think I understand that differently now that I am a mom . . . and I appreciate it a lot more. Of course knowing what I know now about a mother's love makes me feel HORRIBLE about my teenage years (but that's another story)!
Bob and I have always said that we could not have asked for more; my mom's support has been steadfast and unconditional. When I look back on the journey, as I did in my last post, it is not without total awareness for the supporting cast, and mom ran that show. She wasn't pushy and she never seemed to interfere; she just continues to show up in the most loving ways.
Perhaps many people feel this way about their mom, but I just can't find the words to express my gratitude. It's just too much. And so, I just try to do the best job at being a mom as I can do . . . knowing that, in and of itself, that is a gift to her.
From time to time, Bob and I are asked to share our story with Infant Leukemia to groups, mainly at fund raisers. My feeling is that, if Erica's story can used to inspire support, generosity, awareness, or even compassion, then we are in a position to give. This is our opportunity.
On April 30, 2009, I spoke at the Diamonds Are Forever fund raising event for LLS. It was a beautiful event and Renee did a fabulous job of putting it all together. I am sharing, here, what I shared with all those that attended the event. . . . .
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The talk track seems to change over time. I remember the first time we spoke publicly about Erica’s story; I focused almost 100% on the blessings that have been placed upon us throughout the journey. I didn’t want people to feel sorry for us or think that we were ungrateful for all the support . . . but here’s the deal, I’ve become more comfortable with the situation over time and I can honestly say that I will never be able to convey it all—but if I share our story, I need to share the good, the bad and the ugly.
A couple of months ago I summed our experience with this statement: This has been the most painful experience of our life. It is also the most blessed. It is a life altering, priority aligning, uncontrollable journey.
On December 12, 2006, only 4 months after Erica’s birth, we took her to the ER only to be transferred by the Pediatric ICU Transport team to UC Davis Medical Center. It was chaos, complete and utter chaos . . . only we didn’t know it. I remember it as the calm before the storm, the last moments of ignorance, thinking that it was just as her pediatrician had said, it was the flu. When I think back on those moments now I realize that Bob and I were probably the only ones who didn’t know what was going on with Erica, but the news came soon enough.
The doctor who came in the next day sat down in our PICU room and just spelled it all out. This was Infant Leukemia, this was an uphill battle, we better prepare for war and the odds are not in our favor. He prepared us for a long road, an uneven road but one, that with a lot of prayer, we would endure.
From the time Erica entered into her first remission our biggest fear was relapse. How on earth could any human being go through this more than once? Every once in awhile I would imagine getting the news that “it” was back and I would immediately feel a punch in my gut. When it actually happened, it wasn’t so much a punch in the gut; it was like being wrung out like a wet towel . . . but really slowly. It ached, with every twist I had less energy and less hope and less faith. The month of October, 2007 was the darkest month of my life.
But we rallied, and on January 23 of 2008, Erica had a Bone Marrow Transplant. Her donor was a 25 year old male. If you’re not, become a donor. We will petition to meet Erica’s donor at the end of this year. Words cannot express that what this young man already means to our family; in many ways he represents Erica’s second chance at life.
A benchmark event took place in Erica’s journey in February; she had her Broviac tubes taken out. These are the tubes through which she received her blood, platelets, potassium, fluids, pain medication, chemotherapy, flushes, and last but not least, her new bone marrow.
Even today, over a year since transplant, Erica is on 12 doses of medication per day and she has in injection of growth hormone every night. The meds will taper here and there, some may stay on board for years and the growth hormone shot is new normal, expected to be administered every night for the next 15 years.
What we experience today is manageable and even, dare I say normal. Or, perhaps normal by comparison~
Erica has had about:
50 Blood transfusions
50 Platelet transfusions
Over 100 administrations of chemotherapy
She has spent over 120 nights in the hospital
She has had about 25 spinal taps and
About 15 bone marrow biopsies
And 12 rounds of radiation
Erica has endured more than that, she has:
Experienced multiple infections and fevers
Survived a near fatal liver biopsy
Hypothermia
Hypoglycemia
Vomiting
Chronic intestinal infections
Sleepless nights
X-rays, ultrasounds, EKGs
So many procedures and test that an infant should never be exposed to.
I think the main message here is that we did endure. That we are stronger than we thought. Through it all, Erica has learned to do all the things that babies do: sit, crawl, eat on her own, play, walk, dance and talk. Erica is a joy to be around, she literally lights up the room and there is a “knowing” about her that I can’t describe, but it says – “I am survivor”.
Twenty years ago, and that is not such a long period of time, an infant diagnosed with leukemia would have been sent home on Hospice. And if that had been the case for us, obviously our story here tonight would be drastically different.
It’s events like these and people like you, it’s the Leukemia Lymphoma Society that make the difference over 20 years. . . its all about the research, the trials, the outcomes and then we have a new protocol, new regimens and new hope.
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