Seamus's Story

After getting off my training program, I’ve certainly come back with a vengeance.  Which is a good thing since the Virginia Beach Rock n Roll Half Marathon is only 13 weeks away!  Running, swimming, weight-training…I’m pretty sure my high school friends are right now trying to blend the un-athletic me from the early 90’s with this new marathoner-in-training.  Though as much as I love the training, the fundraising has been a major struggle, and I was starting to lose sight if why I joined TNT.  At least I was, until I started to talk with one of those high school friends, Jentry, about her son, Seamus. 

Jentry, and her husband Brian, have generously shared their family's experience with blood cancer with me, to share with all of you.  It is their hope that they are able to give back to the Leukemia and Lymphoma Society for all the good they do for families like theirs. As I write this, and as I correspond with Jentry and Brian, I am re-invigorated in my goal to raise $2500 for The Leukemia & Lymphoma Society.  I have a long way to go, and I hope you will be as moved as I was by this family.  I am so proud to be running this half marathon in honor of Seamus.

This is their story

When Seamus was 3 ½, his parents found a lump on the side of his rib cage about the size of half an egg. Their pediatrician put off sending the family to the hospital, but three days later he had trouble breathing, and his parents took Seamus to the ER.  As his mother said, “I knew something was wrong when they took him in the back right away.”    After a lot of tests, the doctors found a grapefruit-sized tumor in his abdomen. They spent the night together at their local hospital and were transferred the next day to the University of New Mexico Children’s Hospital for diagnosis and treatment.

Seamus was diagnosed with stage IV Burkitts Lymphoma, a highly aggressive and rare form of cancer in the US. His bone marrow was over 95% cancerous.  Jentry, Brian and Seamus spent 3 weeks in the hospital initially, and then returned every two weeks.  In these return trips Seamus was admitted for a full week to undergo non-stop chemo. Then on the off week he went in for outpatient chemo.

In addition to his chemo treatments, Seamus also had 20 blood transfusions, many spinal taps and multiple bone marrow aspirations.  I’ve certainly heard of spinal taps, and how painful they are, but I didn’t know what a bone marrow aspiration entailed.  Jentry explained it to me:  A bone marrow aspiration is when they bore into the pelvis with an instrument that looks like a straight cork screw, breaking through the bone to get a sample of the marrow.  And remember – Seamus was just 3 ½!  In all, his treatment was 5 months and very intense.  Yet through all of this, Seamus was a trooper. On the days he felt well it was only his bald head would let on that he was sick.  He truly has an indomitable spirit.

Brian says that Seamus "did bald well."  I think they both did!

The Leukemia and Lymphoma Society was helpful in so many ways for Jentry and Brian. Initially, they were a resource for information, including ways to explain the illness to Seamus and to the rest of their family. And as time progressed, they helped financially from gas money to assistance with some treatment costs.  But most importantly they were able to meet other families going through the same thing.



Above - Seamus today - Age 11 - And proudly showing off his medal after his hockey team took 3rd place!



I am so happy to say that today Seamus is a happy, healthy, sports-playing 11 year old big brother.    He is considered cured now – his last treatment was Christmas Day, 2003.  As I struggle with my training and fund raising, I’m reminded that every dollar counts.  LLS supports research for new treatments as well as provides financial assistance for families like Seamus’s.  After reading about what Seamus, Jentry and Brian endured, the 13.1 miles and $2500 no longer seems insurmountable.  Together, we can help families: from sons and daughters, to moms and dads – every dollar counts!



Seamus and his family enjoying an outing.  Supporting The Leukemia & Lymphoma Society can help make days like this possible for other families! 

 

Want to donate?  Click the widget in the top right corner of this page, or follow this link to my page!

XOX, Lisa

Meeting Diana

This past weekend I met an amazing young mother – Diana.  This vivacious 28 year-old used to run 5 miles a day and chase her daughter around the house.  But due to a Stage IV Lymphoma found on her spinal cord, Diana is now in a wheelchair.   And though she told me she’s hopeful that one day medical advances will get her out of the chair, she followed that up immediately with a big grin and exclaimed, “But I’m alive!”  Diana is currently in remission and maintains an amazing zest for life and an overriding joy that she’s here to be a mother to her daughter. 

Stories like this are why I joined TNT for the Rock n Roll Half.  It’s 13.1 miles to keep families together to enjoy those milestones so many of us take for granted.  It’s 13.1 miles to keep friends in each other’s lives.  It’s 13.1 miles towards finding a cure!

You can help support patients like Diana by clicking the bad on the right of this page to donate, and/or by shopping  the auction starting Amy 25^th on facebook.  Items have generously been donated by these wonderful shops, and I’m adding more each day!  I cannot thank the women behind these shops enough.  Please stop by their facebook pages through the links below to see more from each artist!

Aggie Chick

Comfy Stitches

Earthwise Emporium

My Lemonade Dreams

Rachel VanNatten Jewelry

SmiLe aGain Creations



XOX, Lisa

PS - got a 3.3mi run in today!  Beautiful weather here in Virginia, and it just felt great to be out there :o)

13.1 miles and $2500 or Bust!

Call me crazy...no, really, call me crazy.
I signed up for the Dodge Rock n Roll Half Marathon in Virginia Beach for Labor Day weekend.

And because that is obviously not enough torture to put myself though, I also joined the Leukemia & Lymphoma Society's Team in Training and committed to raising $2500 through the course of my training for the Half Marathon.

I was starting to think that I need to be committed:  a year ago I couldn't run around the block without having to gasp for air, and now I'm training to run 13.1 miles.  And I don't like to ask for a favor, let alone ask for money.  BUT then it hit me - who cares if it hurts to run?  Who cares if someone says "no" if I ask for a donation?  That's nothing!  But for the patients and their families living with and fighting against blood cancers? That is hard.  A heartbreaking struggle, both emotionally and financially draining, and unimaginable for most people contemplate.  The very least I can do is step outside my comfort zone to make a difference for the parents, children, siblings affected by blood cancers.

Through the course of my training, I'm going to bring you "Team in Training (TNT) Tuesdays."  A major part of this event is that I am running in honor of Seamus and Andrew - 2 incredibly brave boys living full and healthy lives today.  And I am also running in memory of my college friend and sorority sister, Cory Jill Rovin, whom we lost in 1999.  Over the course of TNT Tuesdays, I'll be sharing their stories, and the role LLS played for them and for their families. 

And as a part of my fundraising efforts, I'm coordinating an auction on Facebook.  100% of the proceeds will got to LLS.  I'm adding items daily, and the auction itself begins may 25th!  If you would like to donate to the auction, or know someone who would, please let me know!  twingle.beads@gmail.com

xox, Lisa