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.

Thursday, October 29, 2009

Inconclusive

Wow - this is an interesting turn on this roller coaster. We have been harboring some secret hopes of a differential diagnosis - something along the lines of a bone infection - stories of which a handful of NB families have shared with us. But, since I have been getting such DIRE information from clinic - I didn't even put those hopes out on this blog, but we've held them close and we've been watching Hans' slight IMPROVEMENT in the use of his arm and his DECREASE in his need for pain meds, and we've been scratching our heads that this doesn't exactly reek of Recurrent NB, Part 2.

Yet, up until today, we've been told all signs point to NB. We were told on Tuesday that the pathologist was 100% sure it was a cancer/90% sure it was Neuroblastoma.

Today - we sat through an office visit with an incomplete pathology report. We debated open clinical trials, excited at the news that the Aurora A Kinase Inhibitor Phase II trial opened TODAY. We also debated a couple of other trials, and the benefit of starting therapy with a known effective therapy - such as Irinotecan/Temodor. Kevin and I had been asking about this Bone Infection theory - but we kept getting "NO" as the response.

And then, on the way home, the phone rang. The Pathologist had given up looking for cancers! No stains matched. Not Neuroblastoma, not Osteosarcoma, not Lymphoma. The samples did not indicate leukemia. A second opinion was sought by a Children's Oncology Group Pathologist. This pathologist noted that the cells in the sample were not dividing nearly fast enough to be an aggressive cancer such as Neuroblastoma! So - they are retracting their statement that this is 100% a cancer. The plan is to do an open biopsy and go from there. One possibility is that they are NB cells, but that they somehow got damaged in the process of obtaining the biopsy??? Anything could happen with this biopsy from: diagnosis Neuroblastoma, to some rare bone infection to: no known cause???? Wild. But, we'll take it!

Today Hans had a CT Scan and a Bone Scan. The CT was NORMAL. The Bone Scan appeared normal to the docs but hadn't been signed off by Radiology. That is - normal with the exception of the large right arm bone that lights up indicating the trouble we knew about it.

Well...that's where we sit. Don't know when we'd get in to do an Open Biopsy...don't know if we'll get the green light on starting back up with the next Round of ABT751... don't know what we'll find in a biopsy... don't know and for the moment don't care to know. I'll take the uncertainty and the hope that goes along with it.

Thanks for the prayers, and the love, the emails, texts, calls and everything. Thanks for the NB families that shared their crazy bone anomaly stories that have given us this hope.

Every day is an Adventure. Every day is a gift.

Lara

14 comments:

Mayada said...

Wow- don't know what to say. Hang in there and never give up. Give Hans a hug. Love you guys.

Anonymous said...

WHOO HOO for HOPE shining brightly!

Love and hugs,
Aunt Susy

Charon said...

Wow - that is great news Lara! What a roller coaster is right. I hope for continued good news as well! Hope Hans' arm continues to feel better and you all enjoy a fun Halloween weekend together!

Much love, Charon

Anonymous said...

Wow! This is GREAT news of Hope...
Always hoping the best for you all.
Much Love
Kerry, Madison & Sean

donna ludwinski said...

Oh Lara! Rollercoaster--to say the least! I am so happy to hear about the inconclusive results (and neg stains)....and praying ever so hard that the open biopsy confirms this...and I hope Hans has a smooth and quick recovery from the surgery...! Please--give us good news God!

Blair said...

Sounds like encouraging news! Continued prayers for Hans and your family!

Anonymous said...

Happy Friday! I am clutching on to that hope for you & will keep holding tight until a final diagnosis is found. Hang in there & Happy Halloween :)
Shannon

Anonymous said...

Very happy there is good news on horizon...
Neil & Margot

Anonymous said...

We are all HOPING for you!!!!
Sending all of our love and hope!!
Love you!!
Sunny, Bret, Eli and Max

Anonymous said...

You're not kidding about the rollercoaster! Hang in there--we're going to keep our HOPE strong for continued good news. Hope you are able to enjoy this weekend and Hans has a great Halloween! Keeping you always in our prayers, love,
Sarah

Sigrid Jardin said...

Oh my dears, I've been out of the country for the last 2+ weeks, so have not seen your updates until today. So sorry that the roller coaster is still running, and that Hans is faced with more pain, more hospital stuff. Lara, you and Kevin are the strongest and best and most loving parents, and your bright hope is a gift for your whole family. Please know that I'm thinking of you all, every day, and keeping you in my thoughts and prayers too. Love, Kim

Anonymous said...

Hope and faith... Hope and faith.... continued prayers.

Mona

Shea said...

Just read your post and my heart and prayers are with your family. I do not normally give unsolicited advice, but I believe there is a reason for everything, it's part of God's great plan - recently I watched a documentary called the beautiful truth. It is on natural healing, more specific the healing of cancer - not a usual watch for me, but it sparked an interest. I realize you have your hands full but for some reason I had to leave this for you. Again, as with so many others - sending love and prayers for Hans.

The Adkins Family said...

Sorry to hear you guys don't know anything more. Still thinking of y'all.