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, March 31, 2010

Stable Scans

We just got back from our appointment with Dr. Maris. The read on Hans' MIBG was 'stable disease'. (I actually don't think I've ever had this news to post before, this means that the disease load is just about the same as it was six weeks ago at the last set of scans - no larger, no smaller.) "Stable is Good" is a mantra I've long heard NB families repeat, espcially since bony disease has a way of getting out of control. At least we are not dealing with progression. At least we are controlling it, at least for the time being. Dr. Maris actually told us that he has to assume that this drug is working for Hans b/c it would most likely have spread if it wasn't being controlled. The plan from here is to go home, do two more rounds, and then come back up for a more comprehensive set of scans... Bone Marrows, MIBG as well as a head and chest/abdominal CT. It's not that he assumes the NB is lurking anywhere else, he just wants to be sure it isn't since he doesn't trust this disease. At that point we'll decide which way to go. He said that even though the Millennium trial is written in a way that you could stay on it for two years, he's not sure that you'd really want to. He said it was different from being on the ABT-751 in that way. We shall see.

I'm not exactly overjoyed with the news. I can't help but want shrinkage and ultimatley clean scans. But, I guess we can put the spin on it that at least the disease is stable, especially considering that we were delayed one week with both Rounds 4 and 5.
I guess we'll keep our nose to the grindstone and do everything in our power to prevent additional delays.
I guess we'll try to maximize joy in each day as well all should be doing.
I guess I will pray very hard that this disease will continue to go away.
I'm not one to look at scans usually. I actually just like to visualize them as clear. Today I asked Dr. Maris to show them to me. I want to know where to pray. I know we've said that there was one spot on the skull, but we actually learned that there are two. The second spot has been there since December, it was just unreadable until it showed up consistently on scans since then. There is one small spot on the top of his skull, and the second spot is on the left side of his head, above his ear. They are both faint, but there.

All in all - I think we have to put today in the good news column. Hans is doing great, looking great. His biggest problem right now is an ANC of 312! Great number to be boarding a plane with, huh???

Thanks for checking up on us and thanks for your thoughts and prayers, good vibes, and meditations! We take all kinds:-)

Lara

10 comments:

Anonymous said...

St. Christopher is just going to have to work extra hard to protect Hans from airplane germs while traveling! We also choose to take today's scans as good news and will pray for improvements in the next scans.

Love, G.Kathy, G.Dale xoxo

Anonymous said...

We'll take stable scans! And, we'll continue to pray that those spots go away :)

Love, Aunt Holly and Uncle Michael

Anonymous said...

Three cheers for stable scans!!!

Thank you for the visualization of the areas on Hans' skull...we can "zero" in on them!

Love and hugs all the way around!
Aunt Susy

Anonymous said...

Yay for stable scans.........And we will keep Hans lifted up in prayer.

Love, Mark, debi, Jessa and KK

Anonymous said...

Hi Lara.

You don't know me...I found your blog a couple months ago in a google blog search of "MLN8237" (I have a pharmaceutical research interest in Aurora kinase inhibitors -- more specifically, inhibitors of Aurora kinase B, which have a distinct mechanism of action from the Millennium compound). Since first coming across your words and some adorable photos of Hans, I have checked in every few days. You and your family are wonderful & I have grown fond of you. (Incidentally, I am married to a Hans -- born in Holland.)

I'm delurking now to provide something I came across a couple of days ago. (I'd prefer to e-mail you, but can't find your address.)
I don't know what the significance is, but would like you to be empowered to investigate if you don't have the information and if it's important. The MLN8237 trial in children (NB & ALL) has apparently been "suspended."
http://clinicaltrials.gov/ct2/show/NCT00739427?term=MLN8237&rank=10
It looks like they remain hopeful about the drug based on lots of other trials recently initiated for other indications, though?:
http://clinicaltrials.gov/ct2/results?term=MLN8237
I don't understand the exact meaning of "suspended," and I hope I'm not alarming you. But I need to know that you have the info in case it might be relevant or important for any decisions you might have to make.

You and Hans remain in my thoughts. (And if I were a praying sort - I would definitely pray!)

Stephanie G.

hansjourney said...

Thanks Stephanie G for looking out for Hans. The way I understand these studies, they open and close all the time. We did ask our NP about this one being suspended and she said, "This study is closed because it has accrued the number of kids that it was intended to accrue. It isn't a safety issue or anything else, it is just part of the routine conduct of these studies."...
thanks, Lara kevinandlara@hotmail.com

threemsheep said...

Hi Hans, I know your grandparents Kathy and Dale here in Ellensburg. My grandson Walker is 18 months old and was diagnosed with neuroblastoma in November when he was 13 months old. He has been undergoing treatment at the Seattle Children’s Hospital. Your Grandmother Kathy and I visit about you and Walker and how the two of you are such an inspiration being strong little angles as you undergo the treatments for NB. I am keeping you in my prayers for complete healing.
Enjoy your plane ride.
Another Grandmother in Ellensburg

Dawn said...

Flying with a low ANC is NO FUN!!! Elijah hates to wear a mask on a plane. I am so thankful that Hans had stable scans, but definitely understand you wanting to see improvement. We constantly tell ourselves that "stable is good". Improved is better, clean is best.. but we will gladly take stable over progression.
I will be praying for Hans and that you will see improvement after the next two rounds..

Anonymous said...

Stable is good! I will pray and visualize for these spots to go away also....do you care if I post a link to this blog on facebook, maybe we can get some more prayers on board!
I dont want to post without your consent though. I love you guys!
xoxojana

The Adkins Family said...

Always thinking of you guys!