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TEAM NICO

Our son, Nico, was diagnosed with HR pre-B ALL (acute lymphoblastic leukemia) on January 2, 2013. This is a record of Nico's progress.

WELLNESS WARRIORS

Dale

7/27/2014

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Nico had a lumbar puncture last Monday. I wrote about it, but when I asked Jeff to give it a quick proofread, he responded, “Not if it’s another terrible hospital experience post. I’m really sick of reading those.” Totally. I am sick of writing them. Before I got around to actually posting the latest version of the same thing, something more important happened.

I have mentioned the ALL list serv in other posts. It was the first place that we were able to connect to similarly situated families. We grew very close to a few of the other families from this list serv. From the beginning, there was one mom, Nancy, who always seemed to have sage advice. Her son, Dale, had been through many difficulties during treatment, and as a result, Nancy is really an expert in childhood leukemia (or a “momcologist”). But more important than her willingness to teach, Nancy is incredibly compassionate, always offering other parents reassurance. On the list serv, Nancy is an “old-timer”, meaning that her son completed treatment many years ago. So last November, when we got the email that Dale had relapsed, we were shaken.

Childhood leukemia is really an insidious evil because it can wait years to rear its ugly head again. Dale should have been “cured,” but he was not. Coincidentally, Dale’s relapse corresponded with our move to Maryland, and Nico ended up being treated in the same clinic as Dale. I met Nancy and Dale, and her online persona is no joke. She is as genuine, warm and kind in person as she is over email.

Dale returned home on Saturday after enduring many rounds of intense chemotherapy, radiation and then a bone marrow transplant. He spent almost nine months in the hospital. Dale returned home, however, so that he could leave this world from his own house. Infections and complications rendered modern medicine useless, and nothing else could be done medically for Dale.

Dale’s family wrote: “We had every plan that when he came home from the hospital healthy that we would have people lining the street, welcoming him home. Clearly our plans are different. However, we still want to welcome Dale home, even if the time home will be short.”

Jeff, Nico and I wanted to welcome Dale home. We remember, very well, what these gestures of support meant to us during the worst of our trials. So we went, and we are so glad that we did. The street to Dale’s home was lined with people for blocks, signs of welcome, Dale’s school band played their fight song, his scout troop stood at attention and banners waved. The scene told the story of Dale’s life. Hundreds and hundreds of people waiting in the July sun for hours to make sure that Dale left this world knowing how his life had touched and changed it. It was amazing and beautiful and devastating.

Bad things happen to good people. Life is not fair in any way. But these particular people have taught me what dignity, grace, and compassion in the face of unimaginable heartache looks like.

Goodbye, Sweet Dale.
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Thank You Evolution and Wacky Warriors!

7/5/2014

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This post has been a very long time coming. Sometimes, we get so enveloped in the permutations and challenges of Nico’s care (and our anxieties in response) that we fail to focus on the wonderful and supportive people we have met during this journey. So our family wanted to highlight one particular group of young women. Evolution is a girls’ fast-pitch softball team who, just over a year ago, adopted Nico as their mascot. Nico and Evolution were paired through a wonderful organization known as Wacky Warriors (www.wackywarriors.org).

Nick Raitt founded Wacky Warriors, which participates in marathons, triathlons and its own charity fast-pitch softball tournaments to benefit children’s cancer research. Nick battled cancer for four years, but ultimately left his body behind in 2011 at the age of 22. Throughout his life, and especially throughout treatment, Nick was someone who focused on the positive and believed deeply in charitable giving. His mom, Lori Brower, continues Nick’s charitable mission with The Wacky softball tournament, which is now a statewide favorite for 10 to 15 year old girls. Each team adopts a child undergoing cancer treatment; Wacky Warriors creates a large poster about the team’s personal warrior, and the team plays in honor of the honored child.

Shortly after Nico was diagnosed, Evolution adopted Nico, played in the tournament and won the whole enchilada. Their coach, Roger Nyman, has kept in touch with our family throughout the entire year as Evolution continues to win tournament after tournament in honor of Nico. Over the last year the team has sent Nico winning trophies, an autographed game ball, and Evolution t-shirts (even for mom and dad). Nico keeps the trophies and ball on his bedroom dresser. Nico was delighted to receive these gifts and they have become symbolic to us. Roger has kindly sent pictures and anecdotes as these girls kicked some serious softball butt. In one of his last emails, Roger relayed overhearing one girl encourage the team by reminding them that Nico does not give up and neither should they. They ended up coming from behind and winning that game too. Roger tells me that these girls play with heart and he has never been prouder of a team. We are proud of them, too.

Both the Evolution and Wacky Warriors remind us daily of the amazing people we met in Utah and who continue to sustain us to this day. Thank you so much, we love you guys.

We included a slideshow of the Evolution and of Nico and Jeff wearing the team shirts on warriornico.com (right after this post). Go Evolution!


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Evolution! 

7/5/2014

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