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, July 14, 2011

"Changing Things Up"

Well, shoot. We did not get the news here in Philly we've come to expect so consistently. The unfortunate news is that Hans has a new spot of NB. There is a new small bright spot on the MIBG on Hans' right hip. The spot on the skull is stable, but the new spot puts us into the category "Progressing". What does this mean? Progression means that the Millennium has stopped to control Hans' NB. I guess you could say Hans' tumor has built a resistance to the Millennium, so it's time to move on. It is never fun to jump ship and hop on a new trial before you have to, but honestly, we would have had to change up his therapy in December anyway (there is a 2 yr limit on this trial). This just forces our hand to make the change about 5 months earlier...

So here we are. Hans and I will be detained in Philly all next week.

Kev and Elle will stay long enough to celebrate Hans' birthday tomorrow and they will catch separate flights on Saturday. Elle has a Sea Kayaking Girl Scout Camp to get to in Washington State with her first ever BFF, Greta! Kev has to go back to the grind of the flooring installation in our new house and his job...

Hans will turn 8 in his adopted 'hood of Philadelphia. I can't help but relfect on my little All American Boy! He has visited many different parts of the country. He thoroughly enjoyed our trip to Hawaii and frequently talks about how he wants to go back. He has the frequent flyer miles of many business travelers. He has received treatment in 5 states, and been consulted on by docs in several other states. He has swam in two oceans, visited one rain forest, admired both vlocanoes and the Great Lakes, and road tripped up and down the entire West Coast. He knows his country pretty well! We are all so proud of how he finds joys in the everyday pleasures of childhood and is never down about his challenges. He is developing his little sense of humor and cracks us up all the time.

We are staying next week to do a full workup of scans (BoneMarrows, CT). We will meet with the docs on Wednesday and hopefully enroll on a new trial by Thursday. We've still got our eye on the ALK Inhibitor trial. This is the trial we were considering back in 12/09 when we got on the Millennium trial. There are a couple other options, so I'll keep you posted. Our goal remains the same: to rid his body of his disease burden and maintain his quality of life while at the same time minimizing toxicities to protect organ and other important functions.

In the meantime, it's amazing that we have the friends we've got to scoop us up when we need them. Before we had even confirmed the new spot. I had a text from our friend Dawn assuring me that she's got Hans' b'day covered tomorrow.
Thanks for any thoughts, prayers, or good vibes you can offer us at this time of transition. We are still only hoping for the best of outcomes for our boy.

15 comments:

Anonymous said...

Here's to a birthday in Phila! We already know that there will be chips and salsa to appetize. :)

Here's to a new course of action. Onward and forward, and sending all good vibes.

xx
erin

Kate said...

Wow, you are amazing -- such an inspirational mother, rolling with the ups and downs of this journey with such grace. I am praying hard for sweet Hans. I am very sad to hear about a new spot but hopeful a new trial will banish this NB once and for all.

Anonymous said...

Thinking of you all. I know that you and your family are some of the most "roll with the punches" people that I know. I am sending prayers and GOOD VIBES, the candle is lit!

My love to you all and Happy Birthday to my favorite godson Hans!

xoxo

Roxie

Anonymous said...

Well, foo fiddle...onward and forward! May the new trial be just the thing!

Bring on the cake, candles, song...and birthday surprises!

Thinking of you with love, a smile, and prayers!

Hugs,
Aunt Susy

rbn said...

Is Elle going to Robbinswold? I went there for years, and spent three summers there as a counselor. Beautiful, empowering, magical place. I hope her experiences are as positive as mine.

Vickie said...

*&^^%$#*&^)(*&)*^*$%%#&*)^#

Not exactly what I wanted to wake up to. Solder on Weberlings! Roll us the good with the not so good

Charon said...

Ugh... I am so sorry to read this news! But we all know that Hans has beat this disease back before and he can do it again. Sending thoughts and prayers your way to find a new plan of action soon. I know you all will make the best of the situation and Hans will have a wonderful birthday!! Wow... 8 years old!

xoxo
Charon

Anonymous said...

Hansie - Happy Birthday!! We know you'll have an extra special day with your friends.

Love, G.Kathy & G.Dale
XOXO

Elle - have a good visit with the Aunties and KK during your layover in Phoenix!

Anonymous said...

Birthday wishes for the little warrior!!! I have NO doubt that Hans can beat this--his track record proves it! This new drug will be THE one!! Miss you guys and sending many prayers your way!
The Nolen Family

Kindra said...

Hope Hans had a wonderful Birthday, but how could one not with so much love surrounding him? :) It is sad to hear the news though. He is one tough little man I tell you! You have such a wonderful family and great support system, that helps so much I'm sure. Take care and thank you so much for sharing this journey with all of us.

-Kindra

Will's Dad said...

Sorry to hear it - I hope you had a fun bday celebration as you prepare for a week of scans and plans for what to do. One thing I just learned that I wanted to share (in case it was useful) was that I heard that the drug used in the ALKi study (crizotinib by pfizer) was most likely going to be approved by the FDA in Q4 of this year. This would mean if you did decide to do something else once that drug is FDA approved you can have a doc write you prescription for it even if the ALKi study is not open/available. Also, doing it off study would be easier on the travel/scan/bloodwork requirements. Just thought it was worth mentioning since it helped us with some treatment planning decisions. They'd know more about the timeline than me but I thought I'd share. Good luck this week and with you decision making.

Anonymous said...

Ugh. I'm so sorry to read this. I hope Hans had a good birthday in Philly. We will be thinking good thoughts for Hans to get a new treatment that knocks nb on it's butt.
Margot and the Hutchisons

rherbert said...

You have such grace in the face of the storm! I was so sorry to read about the "progression" but hope the next treatment option is even better with regards to quality of life and success in ridding his body of cancer. Sending you lots of prayers.

Anonymous said...

Gosh La - what nice notes of encouragement from all the friends and famileis you have touched with your positive and graceful spirit. I just talked with Elle, asked her if she had enough clothes, offered her some of mine and will hopefully see her in a little while.
Hansie - any chips and Salsa today? Are you at R McD house? Love and prayers, pl

Mayada said...

Happy Birthday!!! Miss you guys and praying for you each night!!Faith and hope !!! luv ya!!