About Me

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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.

Wednesday, December 02, 2009

Changing Things Up

We got some unfortunate news today. Hans' MIBG showed a new smallish spot on his skull. Hans has relapsed for a second time with Neuroblastoma. Surprisingly, the problem area was no where near his arm, which was negative for disease. Hans was unable to go ahead with the MRI today due to his congestion. So - we have no idea if it would show changes or not. So, the right arm is moving to the back burner.

We are working out a new plan. Hans and I will stay in Philadelphia through most of next week. We'll get bone marrows and a head CT (currently the thinking is the tumor is only involved in the skull, but a head CT will reveal if it is actually in the brain). We are also going to try to get a sample of Hans' tumor that has been preserved from his tumor resection in January of 2007. They'll look to see if Hans' tumor has a mutation to the ALK gene. There is a new clinical trial open with a drug that inhibits this gene and is potentially very exciting for controlling NB among kids who have that genetic mutation. We may put him on that trial, before we even get the results of the test.

It is upsetting to get this news. It just plain sucks. We'd love to have been "the ones" that stayed in a second remission until Hans turned 85. But, we're gonna keep trying! As Dr. Maris and his team said today, it is an exciting time for Neuroblastoma research. We can look to the new drugs with the hope that one of them will crack the code on this ugly disease. We continue to hope and pray that Hans and the other kids battling NB and specifically relapsed NB will benefit from breakthrough research. Yet, it is wildly optimistic to think that everything will be okay. But, thankfully, we can be wildly optimistic.

I'd like to thank all of our family and friends who help us with our grass roots fundraising efforts for research dollars through the bake sales and the lanyard project. It is vitally important to us that we feel we're not taking this lying down. I strongly believe that each of us can do something to make a difference in issues that are important to us. Through bake sales and beading projects, even families like ours, that don't know when we'll even be home for sure, can chip away at the problem. Can affect change. But they'd be pretty meager projects if we were doing them all on our own. So we thank you. The giving trees and lunch for life are temporarily on hold, but you can always donate to the CNCF to promote this important research at www.nbhope.org.

Lara

14 comments:

Anonymous said...

Oh Lara,

I'm so sorry to hear this latest report. Please know that Hans and your family are in our prayers. We are praying for healing and hope.

Love & Prayers,
Theresa Williams

bud elkins said...

I agree, cancer sucks...... my prayers are with you and your family.......
Ironically, today I used your line "Every day is an adventure, every day is a gift" as my quotation of the day on my facebook page...

Anonymous said...

Lara, I don't know you personally but we know of you and Hans via Little Saints. So sorry to hear this latest report. Hans will surely be in my prayers.

Claire

Anonymous said...

Sweet Lara, I am so sorry to hear this news! I just want to let you know that I am praying hard for Hans and for you and your family. Please let me know if there is anything that I can do. Hans is such a strong little fighter. And he is evidence that faith in God and prayer really do work. I am sure he will amaze us all again by pulling thru this. He is an amazing little boy! Be strong and have faith Lara and know that we love you and we are all here for you and your family.

Love,
Beth

The Alexander's said...

So sorry to hear the news, really, really, really sorry. You are in my continued thoughts and prayers. Miracles do happen and one will happen for little Hans!!!

Anonymous said...

Wildly optimistic works for us - we're right there with you! Love, hugs and prayers.

Aunt Holly and Uncle Michael

Anonymous said...

Lara

I am so sorry that all was not clear and that yall are facing another relapse. Everyday is a new day for a cure to fight this ugly ulgy ulgy disease. We will bead and bake until there are no more beads to find a cure for our little ones. Please call if you need anythign we are praying for yall and sending hugs :)
Tracy

Anonymous said...

WILD OPTIMISM is the ONLY choice!!! All of us in New Mexico are right there with Hans with love and great hope!

We also know you have wonderful medical resources, and they know more each day!

Oh, how Hans...all of you... are loved!

Hugs,
Aunt Susy and Friends

Anonymous said...

Oh...I am so sad to hear this news. I am thinking so much of your family, and praying.
Love, Claire Rider

Anonymous said...

So sorry to hear this news! We are always hoping for the best-you are so strong. Better news around the corner-I can feel it.
We love you all, much hope and love
Kerry and Madison

Anonymous said...

What terrible news! Hope and optimism is a good thing. I'm lighting a candle now and saying a prayer. Keep on keeping on...

You are all so strong and such an inspiration. I think that you answered the question of "What do you need?" "What can I do?"...we can all raise funds for research, a cure can be found.

Love you,

Roxie Gribble
AKA "Hans' Godmother"

Charon said...
This comment has been removed by the author.
Charon said...

Lara,

I'm standing wildly optimistic by your side!

Love and prayers,
Charon

Anonymous said...

I know this is such a bummer, but maybe it is just another bump in the road to victory, you all are so strong, you can beat this. It's supposed to snow about 3 inches tomorrow in Houston, see, miracles do happen!
Love,
Claudia