Something Sweet We Can All Do...

I just became aware of a little boy named Noah who is likely losing his cancer fight in the near future. His request is to receive many many early Christmas Cards. It's such a sweet and simple request, I'm sure we can help to make that happen. If you wish, just drop a Christmas Card in the mail to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, MI 48178

Here's a weblink to a site that tells a little more about the story.
Copy/paste, sorry:
http://www.mlive.com/news/detroit/index.ssf/2009/11/thousands_send_early_christmas.html

I'm sure putting this up on our blog will get a few more cards in the mail...Maybe even 20 or so from a third grade class in NM?

Hans is doing okay. Right now we are on alert - watching for clues that Hans is possibly suffering from what Elle had over the weekend...does it never end??? Ugh, So now we are keeping an even closer eye on him. Thanks to my brother, Tom, who got him an early Christmas gift of the newest Optimus Prime - he is busy today popping and slapping and transforming that guy into a semi. Fun, fun, fun! The gorgeous weather here has been getting Hans and I out and about to a new park each day - I can watch how he uses that arm. Looks good! He also is writing and coloring okay...

Lara

Weekend Update

For the first time in a while I have the luxury of giving you more of a normal update than a medical update. We are now on Day 4 of our oral chemo, and it seems to be going along pretty well. So far Hans is just a little bit moodier than usual, but not really too bad.

I've got both kids home today! Elle had a big start to the weekend. We had a fun mommy/daughter shopping spree on Friday night to get a handful of random things we needed. Then, Saturday am she and I set off to Athena's for the CNCF garage sale. It was on a smaller scale this Fall - I didn't even notify too many of my pals that it was coming up. So, we did $500. Not a record, but not too shabby...it's all for the good cause of funding research on NB. Then, in the afternoon we had a nail-biter of a game. Elle played Goalie the whole first half. Our defenders had to work way too hard and she didn't let one goal in! I was amazed by her. For some reason I just can't get over her being such a strong goalie! We held off this strong team, but lost by one, by a very unfortunate, accidental, own-goal on a penalty kick:( Then, by the time we got home from the game Saturday - she was DONE! She has some cold or something. She didn't really move from the couch all day Sunday. I hope it's not a flu. She's starting to look better, but we figured we'd keep her home from school today, and home from soccer tomorrow and she might be back to normal???

Kevin and I were able to get a couple of little house/yard projects done, which always feels like such a luxury after operating on 'hospital mode' for a while. Since Hans' arm is doing better - we are starting to let him resume a few of his normal activities. We just feel we can't let him ride his bike. A fall could really break it. Dr. Russell has explained to us that if he fractures it in the condition it's in, it may never heal. I guess they can't pin it the way it is. That's why it was so scary to go ahead with the open biopsy... there was a significant risk of fracture. We thought - if we aren't supposed to let him break it, we shouldn't let the surgeon break it either...

We are going to wait and see about school next week. We want to observe his arm while he's finishing this round of chemo and debate the school issue next week. School is so fabulous for him, and he loves it once he is up there. But, ever since diagnosis, he is pretty content to hang out at home! I don't think he's too troubled by the missed days.

Start Round 12

Today's counts looked "gorgeous". Hans just started Round 12 of ABT751.
Gotta run, but just wanted to let you know!

Tentative New Plan

Here are Hans' Picture Day Pics - Kindergarten Fall 2009, Age 6
His smile isn't super big - but I won't be takin' a gamble on retake day. I think they're great! If you click on the picture you can see it better and you can really see the pretty color of his eyes!

So - we have a rough new plan:

Recheck counts tomorrow (Hans' liver panel was a bit High last week, and it needs to be rechecked before he can do the next step. If that rings a bell, it was high back in February 2009 when Rotovirus really wiped him out!)

If he clears counts check, he'll go back on ABT 751 for a Round or Two, and then his next scans at CHOP will be pushed up just a little bit.

If his liver panel is still high, we don't have a plan! We'll be back to winging it.

While it is wonderful to have two competent Oncology Teams reviewing your child's case - I do think it introduces some Gridlock. It takes longer for info to be shared and to get answers. This has been about the longest diagnostic process we have been through - and we are just sort of moving on for the moment. Pretty scary big decisions that we are making. It's a little intense, so it's been hard for me to focus on anything else. The good news: Hans' arm is pretty great. We think it still bothers him a bit, but we think it's much better. We are now only giving him one pain pill at night.

We are enjoying some gorgeous weather here in TX. Nice break from heat, heat, heat!

Lara

Change of Plans

Well, we arrived at TCH with an apt for a biopsy and some lingering questions. The outcome was an impromptu team meeting and the current decision to postpone the Open Bone Biopsy. I know - that is a surprise! We had hoped to get some questions illuminated, and I guess our questions didn't necessarily "have" answers... We were also hoping for a greater confidence that the surgeon could go in and get what he needed while doing minimal damage. I guess we were under the impression that they only needed a very small sample, but the surgeon indicated needing a much larger (dime sized!) core sample...

Our next step is to see whether we are cleared to start back up with Round 12 of ABT 751 and go from there (like do a wait/watch with another round of MRI and Bone Scans in a little while...) Waiting for a response. In the mean time, Hans' arm has continued to show marked improvement. However, we have been instructed to keep Hans home from school, and to ensure that he does not injure it. That is, for the time being. We are trying to push through the process of getting Hans set up with Home bound instruction. But, everything is such a process... We are, I think, pretty bummed and confused. We feel no closer to the truth or an action plan to make Hans better. No closer to knowing if it is NB, some other thing, or what! We just in our hearts couldn't put him through a procedure that could hurt him. The docs left it up to us, so we made the best decision we could at the time.

Open Biopsy Today

Oh, gosh, I don't think I've even written to let you know the big open biopsy is today. I'm a little nervous about this one for some reason. I guess we have never had to have anything like this done. We are just trying to get through all of this one step at a time, but to be honest, it hasn't been very fun. Hope our little guy gets through it with minimal trauma, hope they find something ultimately treatable.

Thanks for any prayers, thoughts or good vibe you can send his way. His procedure is scheduled for noon Central Time.

Love, Lara

More Pictures

This is Hans Friday Night as Bumblebee... He doesn't like his picture taken at all anymore - what a pain! he doth protest! He had fun Friday night, but that was all the fun he needed - he stayed in and let Elle and her buddy shane do all the trick or treatin' Saturday night!

Shane and Elle

Elle, Morgan and Adrian Hans' head in forefront...

Kira, Clay, Joey, Cole, Ryan, Hans, Michael, Elle

Happy Halloween

Hello! Happy Halloween. As for us, we've had our share of scares this month! In fact, I think I'm a little overdosed on the whole Halloween gore decor. When we were first diagnosed in 2006, Hans hit TCH Oct 21st and was diagnosed the
25th with Stage IV High Risk NB. Halloween decor was everywhere throughout the backdrop of that experience. It was a little like the Twilight Zone to be back in it all over again - the same exact week, just three years later. When you are inpatient, you get wheeled everywhere for your scans by transport. We've had our fave transport guy "smooth ride" Sonny, hauling us through back alleys of the hospital, with the same spooky Halloween decor popping out at us in the hallways...'prepare for a scare', the signs say. No thanks, I'm preparing to be pleasantly surprised by our next findings! I'm ready for the skeletons to come down and the pilgrims and turkeys to go up.

Nonetheless, we are going trick or treating! Hans was rarin' to go to our local community shopping center last night, and he is going to hit the 'hood tonight. He is dressed up as Bumblebee (the transformer) and I was surprised that he was wearing his mask the whole time. He walked the whole night - which was more of a physical effort than he's been up for in a while, and he actually kept trying to hold his candy bag in his right hand. I had to keep correcting him. Elle, at 11, is totally into it. I'm pleasantly surprised by that. Both my kids are very discriminating candy eaters. I'll be able to pilfer quite a bit, and we can always bring the remainder to clinic.

Our friend Kelly lost her long hard battle with Breast Cancer this morning. I was able to visit with her and pray the rosary with her earlier in the week. I so admired her strength and determination. I have known her for at least four years, and she had been fighting her cancer longer than that. She didn't let treatment or diagnosis get in the way of her agenda. She has Homeschooled her boys Taylor, 10 and Blaze, 6 throughout her cancer experience. I'm praying for those boys right now as they transition into the next phase of their lives. Praying for Kelly, and her family, may she rest in peace.

Lara

Inconclusive

Wow - this is an interesting turn on this roller coaster. We have been harboring some secret hopes of a differential diagnosis - something along the lines of a bone infection - stories of which a handful of NB families have shared with us. But, since I have been getting such DIRE information from clinic - I didn't even put those hopes out on this blog, but we've held them close and we've been watching Hans' slight IMPROVEMENT in the use of his arm and his DECREASE in his need for pain meds, and we've been scratching our heads that this doesn't exactly reek of Recurrent NB, Part 2.

Yet, up until today, we've been told all signs point to NB. We were told on Tuesday that the pathologist was 100% sure it was a cancer/90% sure it was Neuroblastoma.

Today - we sat through an office visit with an incomplete pathology report. We debated open clinical trials, excited at the news that the Aurora A Kinase Inhibitor Phase II trial opened TODAY. We also debated a couple of other trials, and the benefit of starting therapy with a known effective therapy - such as Irinotecan/Temodor. Kevin and I had been asking about this Bone Infection theory - but we kept getting "NO" as the response.

And then, on the way home, the phone rang. The Pathologist had given up looking for cancers! No stains matched. Not Neuroblastoma, not Osteosarcoma, not Lymphoma. The samples did not indicate leukemia. A second opinion was sought by a Children's Oncology Group Pathologist. This pathologist noted that the cells in the sample were not dividing nearly fast enough to be an aggressive cancer such as Neuroblastoma! So - they are retracting their statement that this is 100% a cancer. The plan is to do an open biopsy and go from there. One possibility is that they are NB cells, but that they somehow got damaged in the process of obtaining the biopsy??? Anything could happen with this biopsy from: diagnosis Neuroblastoma, to some rare bone infection to: no known cause???? Wild. But, we'll take it!

Today Hans had a CT Scan and a Bone Scan. The CT was NORMAL. The Bone Scan appeared normal to the docs but hadn't been signed off by Radiology. That is - normal with the exception of the large right arm bone that lights up indicating the trouble we knew about it.

Well...that's where we sit. Don't know when we'd get in to do an Open Biopsy...don't know if we'll get the green light on starting back up with the next Round of ABT751... don't know what we'll find in a biopsy... don't know and for the moment don't care to know. I'll take the uncertainty and the hope that goes along with it.

Thanks for the prayers, and the love, the emails, texts, calls and everything. Thanks for the NB families that shared their crazy bone anomaly stories that have given us this hope.

Every day is an Adventure. Every day is a gift.

Lara

Hanging...

Just got an email from Dr. Russell that the Pathologist won't finalize anything until tomorrow.

We did get a Bone Scan, and a CT scheduled for tomorrowas well as counts and an office visit. We think we're in line for an early Bone Marrow Biopsy on Monday.

I imagine I'll be able to post tomorrow evening with some news.

Lara

Unconfirmed

Hi,

So - we had a pretty rough appt with Dr. Russell today. At the time we saw her, she had contacted the Pathologist at the lab. At that point he had suspected NB at about a 90% confidence. He just hadn't confirmed it with a stain. We were to wait until 5pm for confirmation. I got off the phone with Dr. Russell a little while ago. She had received an email from the pathologist, saying that he was unable to confirm NB with a certain stain, but that he still suspected it, and would try again in the morning. The thing is - they are pretty sure that it is a cancer. The crazy thing it might be possible that Hans is suffering from something like Osteo Sarcoma or AML. If that is the case, Dr. Russell assured us we would treat with the intent to cure. Oh my goodness. What a rollercoaster. Don't even know what to pray for. That's it's all wrong - that somehow the "infiltrant" detected in Hans' Bone Marrow cannot, must not be a cancer.

Thank you for your thoughts and prayers now. We are waiting. I don't know if we will be informed of anything tomorrow. It's not usually much of a communication day in clinic. We are trying to get Hans scheduled for a CT and a bone scan and a Bone Marrow Biopsy. The thinking is, if this is indeed disease (which they think it is now), and it is no longer MIBG avid, we don't know how many areas are involved.