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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.

Saturday, January 07, 2012

New Soft Tissue Disease

I can't even believe I'm typing these words. They barely even compute. Hans' MIBG scan revealed a 2 cm soft tissue disease lesion behind his heart. It's in a spot common for NB to pop up. Between the heart and the back bone. The bony disease is about the same.

We were bracing to make a decision about MIBG based on relatively stable disease, but now we are making this decision based on new growth in merely three weeks time while on ICE.

We are hoping to make counts and start MIBG therapy in San Francisco as early as Thursday. My godsend of a girlfriend Roxie has committed to be there every step of the way. What do you say to someone who commits to show up for the worst week of your life? Thanks, Rox.

We had some good news, but it is all relatively diminished by our bad news. Hans needed both blood and platelets yesterday. I asked them to just admit us and we were able to get tanked up overnight. The amazing thing was that Hans had NO reacation to platelets! Thank the Lord. Hans' platelets had dropped to "less than 5", and HGB had dropped to 7.4. Hans got both blood and platelets. They were also able to add him on for the bone marrow procedure since we were in house. He completed marrows and they are preliminarily negative for NB. We got discharged and are home for the weekend. Last night Elle was spoiled by Aimee's love and attentions. They went out shopping to blow some of E's Christmas cash. Elle was also taken to work, thank gosh they needed a 13 yr old intern!

Local counts on Monday and Tuesday will help determine if we pull the trigger to go to SF. They have set a very low threshold for platelets of 20 (with no additional transfusions) and HGB of 8.0 (he may have a transfusion to reach that level if necessary), and his ANC must be 750. If he doesn't make counts there is no MIBG opening at UCSF until Jan 26th.

Not only is the MIBG still indicated with the new disease, it is even more urgently indicated. I have some anxiety and negative energy about it. I have to figure that out. Hans does as well, but we'll have to figure it out. It really seems to be our best option at the time. The path is all laid out. I have the understanding that MIBG is more effective on bony lesions than soft tissue disease, but that it is still indicated as a therapy for soft tissue disease that is "MIBG-avid" (a.k.a. disease that lites up on an MIBG scan). This new lesion is MIBG avid.

I have followed kids' stories who have responded in worse situations. The main solace I am giving myself right now is that our path is laid and that Hans has now had two random soft tissue spots (skull and lymph nodes) which have COMPLETELY responded to therapies since July of this year. Dr. Tran said it could possibly be another lymph node. We have lymph nodes everywhere.

We plan to enjoy the simple pleasures of life at home this weekend and push forward next week. I feel like I am pushing a boulder up a hill right now. It's a pretty disturbing visual image that there is a new little tumor sitting right behind our boy's heart. Clearly, no one knows how best to proceed, other than one step at a time, gently and with a whole lot of love. Hans provides us with an eternal wellspring of unconditional love. We gain whatever strength we need from that good, sweet love.

19 comments:

Anonymous said...

Dear Lara, Kevin, Elle, AND Hans...

Infinite love flows as you continue to face the challenges and choices with your wisdoms.

I hold all of you in my heart with great hope, standing beside you and behind you!

Bless Roxie...Love and hugs, Aunt Susy

CCEC Maxwell said...

Cousins,
You are our heros! If anyone has the power, strength and wisdom to navigate this boulder, it is you. We love you all so much and continue to cheer you on in this journey.

Peace, Love and Hope,
Critter, Colleen, Erin and Claire

Anonymous said...

Well, _ _ I T !! That's all I can say.....love you guys. pl

Shannon said...

Sending big love & hugs from TX! Wow, I'm kind of speechless.... just want you to know that I am thinking of you & sending my love.

Vickie said...

Press on. Hans has been blazing paths his whole life and will continue to do so. You know we love you. I wish you all could catch a break.

suzanne said...

darn it!

hugs and prayers as you all "keep on keeping on".

Anonymous said...

All our love and prayers and positive thoughts from Texas. If we can do ANYTHING from here let us know.

Tanja & her brood

noni said...

We pray for Hans daily!!!,
Bill and Terry (Halie Pigotts Papa and Noni)

Charon said...

Sending prayers and love your way! I am so sorry for this latest setback. I hope Hans makes counts and you can proceed quickly with treatment. I also pray Hans continues to defy the odds and responds once again and for continued strength for you all.

Much love to you!

Anonymous said...

Praying for you guys and I'm so happy that I can be there to help out!

Love you all!

Roxie

Anonymous said...

Our hearts are swelling with love and prayers for Hans!! We love you all! Shelley, Tim and Greta

Anonymous said...

Saying prayers for my little hero!Hope your weekend is going well and that this coming week Hans will be able to start treatment. Love you all, Cindy

Anonymous said...

We keep checking in and are so sorry that you and Hans have had this latest set back.Love, hugs, and huge prayers from all of us here in Texas.
Katie, Dennis, Connor, Maeve, Liam

Ingrid Vance said...

Hans has rallied before and we have hope and faith that he can do it again. We are praying for healing, of course, and for wisdom for you and Kevin and the doctors as you make decisions for his care.

Anonymous said...

I am so sad to hear this news. I will be saying extra prayers for Hans. He is an amazing boy and so so brave!!!
I will also pray for peace & strength for Hans Momma & Daddy!

Sending much love,
Claire

Anonymous said...

Prayers that all works out as planned. Lots of love and hugs to you all.

Aunt Holly and Uncle Michael

Anonymous said...

Sending you lots and lots of positive neuroblastoma fighting vibes from Canada. You guys are in my thoughts and prayers!

Anonymous said...

Everyone I talk to in Seattle is saying prayers and sending healing thoughts your way. Our hope is that Hans' counts improve, you make it without a hitch to SF, and treatment works to get rid of all the NB!

Love,
G'ma Stephanie

Unknown said...

Pumping up the 'circle of light' ladies. International prayer warriors that have been there for Hans before. I just wish that you all could get a break for once. Praying strength and wisdom for the docs and staff in their decision making and, of course, counting on the little hero to focus his courage to blast this newest setback into space. Such love. What an amazing family! Accept His Grace. Love & hugs, Wendi in E'burg.