About Me

My photo
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, August 17, 2011

Oh, what a long strange trip its been

Hans this evening enjoying a little RnR and Aimee's with pizza, wings and the remote!

Well we got some unexpected bad news today. I thought I had absorbed all the bad news that could possibly be dolled out, but no. It seems the pathologist, Dr. Shimada, was out of the country last week. Upon his return from Japan, he took one look at Hans' bone marrow biopsy and apparently saw the NB with his naked eye. Whoa, I wasn't prepared to walk into that information in today's office visit!
BUT to tell you the truth, I had been truly truly struggling with making any sense of Monday's MRI results until I got this piece of information. I hadn't wanted to post about them until I could meet with the Onc today. I guess the good news from the MRI: no big bulky disease apparent on the spinal column. This is what Dr. Marachelian had been looking for and we were all so happy to hear was not there. There were some "Bony Changes" in a couple of the vertebrae. That is actually consistent with the findings of the CT. This is where the waters get mucky and I'd like to go buy an "I hate MRIs" T-shirt. I feel like I'm pretty good at understanding MIBG results, but every time Hans has had an MRI result, I feel pretty desperately confused. The cause of "Bony Changes" could be: treated tumor, active tumor, bone marrow disease, or some other factor. Are you as confused as I am yet? Hans has never had disease there. Well, now that we know he has a little bone marrow disease, maybe it explains the "Bony Changes" on the MRI.

Today's office visit was unpleasant, but I don't want to paint all too negative a picture. I feel like Hans' scans make total sense to me now. I feel like we have a pretty clear sense of what we're up against. Yes, I had to hear the phrase "Rapid Progression" uttered about my boy today. BUT at the same time... we were working together to do an assessment of Hans' response to therapy. The Fellow in our office visit today literally used the word "AMAZING" to describe the complete disappearance of the lumpy NB across the top of his head. Dr. Marachelian was also very pleased to point out that Hans's lymph nodes shrunk back to normal and the little pea sized lump on the back of his skull is GONE. This is exciting because these areas are not being irradiated. The fact that they are gone is an indicator that Hans is systemically RESPONDING to the Irino/Temodor. For the time being, I'm hanging my hat on those last two facts. Oh, in addition, he had a robust CBC: HGB 12.1, ANC 6K, and Plts nearly 300!

At the end of a long strange month, it's a wine and chocolate dinner for me tonight. Hans is eating well on Pizza and Wings. We got sprung from the hospital yesterday. We are lounging around at Aimee's. She has been soo accommodating!!! Thanks, A! We will head home this weekend:) Kevin and Elle have come down as frequently as every other night and Kev is able to be in on most of the big office visits through speaker phone.

Thanks as usual for checking up on us and thanks for your thoughts and prayers for Hansie and his NB buddies especially Lily and Ava right now. xoxo


Anonymous said...

I feel for all of you! I'll take the positive and pray that the negative becomes positive, too. More amazing results are the thoughts I'll keep close to my heart. Love and hugs, healing thoughts and lots of prayers.

Love Aunt Holly and Uncle Michael

Anonymous said...

Thanks for the update Lara. So glad that Hans is responding quickly to the chemo. I will pray that continues. Hang in there & big hugs to all of you!

Vicki said...

Thanks for updating. I'm glad he's feeling better and eating. He looks a ton better in the photo. Miss you guys! Our prayers and love are coming your way.

Anonymous said...

Love the new hair and eyebrows!! I can't decide whether Hansie's more handsome with hair or without hair. He's special anyway!!

G.Kathy & G.Dale xoxo

erin marie said...

I second Aunt Holly's words, and would like to add that I totally endorse a night of pizza, chocolate, wings, and wine in the company of your good friends. Miss you, love you, raising a glass to you!


Anonymous said...

Hans! I can tell the pizza and wings were MOST satisfying...your eyebrows are raised in satisfaction!!
Quite a handsome photo!

May everyone catch their breath, and the good news multiply!

BIG love and hugs,
Aunt Susy

Anonymous said...

Thanks for keeping us posted. Prayers are continually coming your way!! I know without a doubt that Hans will respond to this treatment! Miss you all!!
The Nolens