Dear Friends and Family,
As I write this note, Hans has just passed the 2 year anniversary of the diagnosis - Stage IV Neuroblastoma, and more gravely, he just passed the six month point of his relapse. We are very pleased with Hans and the way he is doing now. It seems that the disease he now has is minimal. Hans seems to be feeling quite well. He really enjoys relaxing at home – he has become a very skilled gamer and he is quite adept at ‘transforming’ his small army of Transformer robots. He also enjoys going for bike rides and spending time with family and friends. He loves his dog, Honey, and he is a little joker. He has a voracious appetite despite his small size; our little lion cub. We feel just such privilege and joy in loving him and being loved by him.
I shared with many of you an article that came out here in The Woodlands last November. The story covered the four children here diagnosed with Neuroblastoma. There is one sentence from that article seared into my mind. I don’t know if you remember it the same way I do – but I cannot shake it. “The median survival time of a child who relapses with Neuroblastoma is 8 months.” (Conroe Courier, November, 2007.) It should be terrifying to be six months into this thing. But, we must choose hope. We have suffered great loss in our community of friends this past year. At TCH alone, we have now lost Haliegh, Carlie, Chloe, Ryan, Blaine and Chloe, all to relapsed or ‘refractory’ (never went away in the first place) disease – this year alone. It has been brutal.
It has struck Kevin and me from day one that there is only one thing that is going to increase our kids chances’ – Research. Last month was Childhood Cancer Awareness Month. One night I took the kids to Chili’s as they were promoting the Month and contributing to research at St. Jude’s. I found it remarkable that in 1962, when Danny Thomas founded St. Jude’s Children’s Research Hospital, children with leukemia [ALL, I presume] had a 4% chance of survival. Today the survival rate is over 90%.(As per the Chili’s Children’s Menu – October, 2008.) The only thing that closed that gap and saved those lives is research. We’d love to see similar increases in Neuroblastoma survival rates in the coming years. Today, a child with Stage IV NB is given about a 38% chance of survival, and once you have relapsed, the numbers are much, much smaller. To have HOPE, we can only look to specific cases of success and cling to innovative new ideas and research. We absolutely refuse to give up HOPE. We are committed to doing what we can to fund a cure. The way Kevin and I see it is the longer Hans can hang in there and survive, we are buying time for the brilliant research scientists out there to roll out the silver bullet.
So, I come to you again, and ask that you consider skipping a lunch out this month. Brown bag it for a day and give up $5- $10 (or more) in honor of Hans and his valiant fight against this aggressive cancer. An NB dad from Dallas started this Lunch for Life program a few years ago. The donated funds go to the Children’s Neuroblastoma Cancer Foundation. I can vouch for the fact that the funds are well used. The CNCF makes grants to clinical trials that haven’t been funded through government funding, or pharmaceutical companies. When you make a donation, your name goes up under Hans’ giving tree, and a Christmas ornament is placed on his tree. He loves to check out his tree and see his ornaments grow. I cannot tell you how proud we feel to see each of your names under Hans’ tree. Through the coordination of kind sponsors, for each tree Hans fills, he receives a $25 gift card to Toys R Us. We are also entered for a family trip to Disney World with each donation. Simply go onto www.lunchforlife.org and click Donate Now, and highlight Hans’ name.
We appreciate your support this month as we mark the second anniversary of Hans’ diagnosis. Two years ago our course was charted on a very different path. Since that time, so many have helped us in so many ways – we couldn’t have come this far with out you, and we appreciate your support in the cause that is not only nearest and dearest to our hearts, but the one that could quite feasibly save our boy’s life.
Thank you.
With Love and Gratitude,
Lara, Kevin, Elle and Hans
About Me
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.
10 comments:
We're right there with you, Weberlings, hoping & praying. Hope is a powerful, powerful thing and sometimes all we can hold onto. Bless you all for your strength and courage through this journey you're on. You are ALL such an inspiration in the true meaning of grace. Bless you for sharing this journey with us and allowing us to fill the 'gap' when you feel you don't have the strength. You are an amazing family. Grandma Kathy keeps us up-to-date at work when we don't have time to check the blog. She is a dear and much admired boss & friend. Wishing you the best of luck in your upcoming experience and holding you tightly in my thoughts & prayers. God's grace and love uphold you in the weeks to come. Wendi
Great letter Lara! See you tonight (if I can stay awake that long). You're not bringing Elle, are you?
VB
Hi there....found your blog and thought you might be interested in joining 2000 of us...families/organizations in our mission to raise awareness of childhood cancers. (also sent you an invite)
www.curechildhoodcancer.ning.com
Also sign our petition:
www.thepetitionsite.com/1/curechildhoodcancer
Take care....
Kathi
www.caringbridge.org/visit/kelsiemckune
Hi Lara -
You don't know me - but I work at Kellogg with your mom in Shoreline.
I just wanted you to know how moved I am by your blog. I read it every time you post, and am always inspired by how you frame your posts in such a positive way. You always are looking for the positive, working toward the solution, and all the while clearly focusing on creating joy every day for Hans, Ellie and your husband. I want you to know how inspiring your blog is to those of us who are facing similar situations in our lives. Your passion to advocate for Hans is incredible, but more meaningful to me is the strength you show.
You are facing a situation that no mother should have to face, and you are handling it with grace, courage and beauty. I am sure that everyday, it is a struggle to find this courage. I am sure you fall apart and I hope that you have people around you that just let you cry and fall apart when you need to.
When I read your blog - I feel the joy and comfort you bring to Hans, and am convinced that your strength and courage is the best medicine for him. It is inspiring to see that you are wanting the very best life for him and want this experience to be meaningful for Hans and those who are experiencing this with you.
Please know that the love and support for your family extends way beyond the circles you are aware of, and that there are endless prayers and love coming from all directions.
Thanks for finding the beauty in this heart breaking experience and sharing it with all of us.
I wish you an extra dose of courage and faith every day!
:) Liz
Thank you for the good idea of where to send funds. It's so hard to know if the money we donate is going to a good place or not. I can't believe how much the odds have improved over the years. That is amazing. I'm so sorry you've experienced so much sorrow and loss through this. I'm very happy that you have so much hope for Hans! I can't bear to see children in pain.
We'll do what we can!
Your letter is so powerful. I forwarded it onto the places here that are helping us raise funds for NB. We continue to pray for God's miracle for Hans. Praise God that he is doing so well right now. Keep us updated on when this new treatment will start and if we can help in anyway. If you need me to be there with you....I am there! Love you guys bunces and miss you so much.
P.S. When do we get our "14" nights with Hans?!
Aunt debi, Uncle Mark, Jessa and KK
La - Wow....we love you guys so much and you do know that we are saying our prayers like crazy!!!
love, pl
I also sent this on to Jaimie Moyer and Karen, you never know if they can help out. pl
hey Hans - i'm giving up lunch today! Take care, you are important to us.
bud
Lara, Kevin, Elle and Hans, We're here supporting you! Great blog post. Without passionate families, volunteers and donors we wouldn't be able to continue to do the things we do.
Bob @ St Jude Children's Research Hospital
I made a new lanyard for work - it's my "Hans" lanyard. My boss liked it and after I told her how friends and family were making them and that the proceeds go to CNCF, she bought one. As part of this year's Christmas, I'm going to give each of the kids a card that says an ornament has been added to Hans tree in their name. It all adds up and is truly the path to finding new treatments and, ultimately, prevention.
If you run into Andy, Christa and baby while in Philly, give them hi's and hugs from me.
As always, love and prayers for all of you.
Love, Aunt Holly and Uncle Michael
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