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.

Wednesday, August 10, 2011

Mid-Week Update

I'm sorry to have kept you waiting.

There is good news and bad news.

The good news:
Hans' bone marrows were negative for Neuroblastoma!
Hans' kidney function is normal!
Hans' CT scan was "unrembarkable" (Yay - no bulky disease!)
Hans has now had three days of radiation and chemotherapy (thank God we are giving this kid some treatment!!)
They are radiating two spots on his head and they are giving him IV Irinotecan and oral Temodor. His Radiation therapy is scheduled for 12 sessions m - f, which he can do on an inpatient or outpatient basis. His Irino/Temodor is on a 21 day cycle, he gets chemo the first 5 days and has 16 days off. At this point we haven't planned any farther out than the first cycle. We will make our additional plans shortly.

The bad news:
THe MIBG looked worse than the one we did in Philly on July 14th.
There are more spots on the head (consistent with MRI and what we anticipated to see).
The spot is still there on the hip - this is the new one that showed up in Philly on July 14th.
There are a couple of question mark spots on the spine.
We will do another MRI to confirm these or rule them out.
In all honesty, with Hans' pain, and with the rapid growth of what we can actually see on the skull, I was bracing for worse news on the MIBG.

Hans is having a rough week! He is just wiiiped out. The pain team actually switched him out to IV Methadone for the pain in his back:( With the combination of all three (methadone, radiation, and chemo) he is just sooo sleepy and has no appetite. He has had nothing to eat since Sunday night. He is being very closely monitored by the endocrine and pain teams. The good news: we are weaning him back to a lower dose of methadone and a lower dose of his super high dose steroid, decadron. We are all hopeful that we will have home/oral dosing in place for a possible weekend discharge.

Our Outlook: We are treating all of the NB with the combination of Radiation and the Chemotherapy.
We are optimistic that Hans will respond. In fact, I am putting all of my eggs in that basket. I don't have another basket.

Emotionally we are pretty fragile. This has all happened so fast and it's terrifying. I am sure I take out my emotions on the staff here. When something goes wrong, and for some crazy reason we have had at least a half dozen communication errors, I freak! I actually sat our attending and fellow down and gave them a little presentation on those errors. Since then, I have been treated like the Duchess of York! Oh, I also fired one resident from coming into contact with Hans. We are sort of fragile, in a war zone. A little PTSD going down. I'm trying to chill out!

But, I have to say that we have found in Dr. Marachelian everything we could need or want from a local oncologist. I am satisfied beyond my wildest expections. We are in communication with Dr. Maris and Mosse, and the two teams continue to communicate about their decisions for Hans.

Thank you for checking up on Hans and thanks for your thoughts and prayers! Please put all your eggs in one basket along with us.

15 comments:

Blair said...

Tossing our eggs in that basket too! Continued prayers, and thank you for updating. I'll be thinking of you guys and praying for Hans while we're at TCH for our little guy's heart MRI tomorrow.

Ingrid said...

Oh, My! What a week for you all. We will continue to pray without ceasing for Hans and your whole family. I am so relieved to hear that he is getting such comprehensive treatment, and hope for only the best for him. God Bless this sweet child!

Anonymous said...

What tough news you have gone through in the past month. I'm so glad that Hans is getting pain relief. I hope that you get to go home for the weekend and maybe some time for Hans with Orange and Honey will get him feeling more like himself. The candle is constantly lit and you are all in my prayers.

xoxo

Roxie

Anonymous said...

That sounds like such a hard week- you should be allowed to freak out all you need- Im so sorry! Thinking of you all and praying and visualizing the best outcome. Love you guys, Jana

Anonymous said...

I am placing all my eggs in the basket as well. And keeping up the prayers.
Love you all.

Sunny
XOXO

Anonymous said...

Love and prayers abound for sweet Hans, and his valiant family!

A greater life challenge cannot be conceived, and you are champions in every sense! By voicing your concerns on Hans' behalf you ensure the best possible out comes for him, and offer staff valuable feedback! Your wonderful team of doctors evolves, because they do pay attention to noble thought!

Hugs,
Aunt Susy

Anonymous said...

Our eggs are with you! And lots of continued prayers for you all.
Many blessings,
Katie K

Anonymous said...

Non-stop prayers and love from all of us! Our hearts and minds are just overflowing!

Love and prayers -- Shelley, Tim and Greta and our extended family and friends, too!

Anonymous said...

I'm throwing in our eggs, meat, poultry, veal and pork into that basket--the whole protein family!!! We KNOW Han's tumors respond to treatment and we will pray accordingly--never ceasing!! Love to all of you during this trial--but it too will pass and Hans will be jumping into his pool!!
Love, The Nolens

rherbert said...

greneHans is so lucky to have such a strong and "on top of things" family looking out for him. Who can blame you for being upset over communication errors. Your little guy's health is at stake. Hans has been stable for seemingly so long...it is very hard to read of the latest turn of events. It is my hope that things turn around quickly and he is able to get the NB Beast under control once again. I often think, "I do not know how parents of kids with NB do it...." I know you do not have a choice...but still, it takes amazing strength, courage, and grace to walk this unthinkable path. Please know that you are not alone.

Kim Tyler said...

I'm checking up on you several times a week and continue to pray for a good outcome for all of you, especially for Hans. Your courage and stamina and resourcefulness are truly amazing, and Hans is fortunate to have such a loving team fighting for him. Sending love to all of you.

Lisa said...

Sending all of you a blanket of Love. May you feel God's support and may Hans receive healing touches.
Love to you all.

Mayada said...

Prayers for all of you. Eggs definitely in the healing basket. Miss and love you guys.

Anonymous said...

My thoughts and prayers are with all of you. Prayers for Hans' healing and prayers for your family's strength to pull through. Hans has always responded to treatment and this time will be no exception.
Lisa

Anonymous said...

Eggs in the basket, prayers on the wing. God bless you, Weberlings. Strength and Grace to you all! Love, Wendi R.