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.

Friday, August 05, 2011

MRI

So we met with our onc on Wednesday. The mystery symptoms, specifically, those bumps reemerged on Hans' skull, and a vision problem of seeing double or a little bit crossed eye, persisted. The onc took a look at him and ordered a STAT CT of the head. Wednesday evening we were relieved with the news that the head CT was "relatively preliminarily okay". However, yesterday's MRI proved the CT very wrong. The bumps along the top of Hans' head are NB. What they suppose happened is that the skull lesion that has been under control on the Millennium for so long has grown up and out. There doesn't appear to be any brain involvement at all. There are a couple of other little spots indicated on the outside of the head as well. The lesion(s) that are there are outside the skull.

This is a really big, unfortunate deal. We are going to get started on radiating these spots as early as we can, today or Monday.
We are inpatient once again (our fourth inpatient stint in 5 weeks) to expedite some additional tests that need to happen including a neuro opthamology exam, possible biospy, radiation consult, possible lumbar puncture, CT of neck chest and abdomen, and another MIBG scan. We hope that all of these tests will be completed by Wednesday of next week. However, treatment can start as soon as possible since we are not enrolling on a study at this time. We will do radiation in combination with some chemotherapy such as Irinotecan/Temodor, (to which Hans has responded before). We'll find out shortly, but the radiation will likely be on an outpatient basis, approx 20 sessions, or four 5-day weeks here in LA.

This is awful, terrible news in comparison with our hopes to do something low dose and oral and from home for Hans now.
I am just hoping and praying that Hans will continue to be the great RESPONDER to therapy that he has really always been. We can get these lesions under control over the next 4 weeks, and eventually find that great, low dose therapy we can do from home... For now, we are glad to be here at our home hosptial, even if it is a 2 hour drive from home! My mom brought Elle back home early this week. They are here with us now - they are staying at the beautiful nearby Ronald McDonald house and Kevin is able to work and come and see us and be here for important meetings. We have our sweet friend Aimee who has proven to be at our disposal!

Thanks for your thoughts and prayers for our beautiful boy. We could really use them now.

Love, Lara

12 comments:

Shannon said...

So sorry for this latest setback. I will be praying big time for Hans & all of you! Hang in there. Sending big love & hugs from TX....

Anonymous said...

Oh, I am so sorry for this...I am praying hard.

Love to all of you,

Sunny
XXXOOO

Anonymous said...

Oh, my heart is aching for you all. I am so sad to hear this news. I am glad you guys are closer to your family. So nice for your mom to be there. Praying for Hans.
Claire

Charon said...

Lara, You have been on my mind so much and I am so sorry for everything that you all are having to endure. Hans has been a good responder to treatment before and I will be praying for the same this time around as well. He's a tough, little guy! So happy you have friends and family to scoop you up and take care of you all. I am only a phone call away if you need to talk.

Much love, Charon

Anonymous said...

Aunt Susy and the sweet fawns send our love, hugs, and prayers for peaceful days and a GREAT response to treatment!!!

Prayers abound for Hans in every church in town...he and his family belong to a wide circle of New Mexican friends!

Love and hugs,
Aunt Susy

Kate said...

Oh I am just so sad to read the latest news about sweet Hans. I will be praying extra hard for him. He is an incredible fighter with a brave heart and although we have never met him or your family we are inspired by him and pray for him often. Sending all our prayers and support your way.

Blair said...

So sorry it wasn't better news :(
Sending lots of prayers from Texas!!!

Anonymous said...

Sending love and light, praying that he will be a responder, praying for peace for your family. So glad that you are back home in CA! The candle is lit!

xoxo

Roxie

Anonymous said...

Sending love and light, praying that he will be a responder, praying for peace for your family. So glad that you are back home in CA! The candle is lit!

xoxo

Roxie

Anonymous said...

thinking of Hans and sending out healing thoughts and praying that he responds. love you guys, jana

Halie Pigott said...

Lara,
You have all been on our hearts and in our prayers!
Praying for you,
jenn

Pam said...

Lara, Kevin, Elle and sweet Hans,

We miss you all, and we are so disappointed in this latest bump in the road. Many hugs and kisses for you all. You seem encouraged that this latest NB is growing up and out, so we will take comfort in that, too. We feel confident that your newest course of treatment will return you to remission and some peace of mind and spirit. Love you!

John, Pam, Courtney and Cassie Sweebe