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.

Monday

We have been home all weekend.

Hans has been staying here, taking it easy at home, with Daddy.

Elle and I have made it out and about a bit more. She had a good game on Saturday. She had a quick turn in goalie with one beautiful belly dive save. They didn't quite win, just lost by one, but that's not what it's all about, right?

We also made it out to Octoberfest at SSJ yesterday. Elle won third place in the costume contest for her age group. It doesn't hurt her odds that the total number of entrants in the 11-14 y.o. age group drops off a bit from the younger age groups. Here she is as A 50's Sock Hop Girl.

We have an office visit with Dr. Russell tomorrow mid-morning. Hopefully we'll have some results. Praying that this thing is somehow treatable!

Lara

Bone Biopsy

Hans went in for the Bone Biopsy at about 10am and was done by 11am. He had two hours of recovery and he is now back up in his room eating and playing. We are going to go home, pretty soon I think! Results due on Tuesday. Now we wait!

More thanks... thanks to Matilda for offering mass by Father Vincent in Hans' honor.
Thanks to the Naughton's and the Ford's for squiring Elle to and from soccer. That girl hasn't had to miss a beat. I went home and was happy to hang with her last night! Two more: Thanks to Carmen for taking care of Elle today, and to Nurse Natalie who dropped of some cool Transformer Walkie Talkies!

Lara

MIBG Negative

But, don't get too excited yet! We understand that about 20% of kids are not MIBG avid. Hans has always been MIBG avid, but it could just be that he is not MIBG avid all of a sudden??? So, the next step is a Bone Biopsy. We have never been through this and we don't know how hard it will be on Hans - they'll try to get him on the schedule for tomorrow.

We had great luck this morning with going for an early test. Not sure if I"m burning all our luck up yet - we'll see.

The Biopsy will take several days for a read - they have to decalcify the bone, and then get some cells on a slide. Possible outcomes include: Neuroblastoma, Infection, Secondary Malignancy, or...nothing (meaning they miss the problem in the biopsy). We were told it was rare, but if nothing comes back on the slide - they'd have to go in and do a more invasive surgical procedure. Wow-what a mess. So, here we sit... if we get in tomorrow, we wait til Monday or Tuesday for results. If we don't, we wait til Monday for the biopsy.

I believe we have a good shot of being sent home tomorrow, so long as Hans tolerates the procedure with no surprises (if we have it)! His arm has declined rapidly this week. He keeps it very stabilized (The MRI did detect a small fracture), and uses it very minimally. However, he has refused pain meds all day, and has only had two oral doses of the stuff since 9pm. Hans is a trip.

Thanks for the prayers. I know a lot of you are very concerned about Hans right now. I'm not sure if this falls into the category of good news, bad news, or odd news. He is being carefully considered. We are wrapping this boy up in all of our love.

Thanks to my girlfriends who sent Michelle down with a special care package today. It was sweet - Hans worked on the Lego Indiana Jones set all day! We have enough quarters for 40 nights in the hospital!!! My gosh, hope we are outta here tomorrow night anyway! Thanks to Mayada and Sarah for popping in on us and for a hug and flowers. It's so endearing to me - Hans has been around here a while now, (3 years to the day since he first hit the 9th floor!) and when the nurses and staff catch wind that he is on the floor, our old friends make their way around to say hi. Our nurse yesterday told me that a newer nurse said, "I'm just gonna have to come and meet this Hans everyone's talking about!"

Good night! Lara

MIBG this week

We got into the MIBG scan this week. Injection will be today and scan tomorrow. Some poor kid out there got his/her scanned bumped for us. I'm sorry for the drama that must have brought to their family; may that child enjoy beautiful clear scans next week!
The MIBG may confirm what we already suspect. Then we can have at it! We are keeping Dr. Maris' team at CHOP in the loop, so we want to make sure they are on board every step of the way.

Hans' pain is now pretty consistent. The docs are looking to find an effective oral pain med so that we can take care of him at home. It was useful to be here up until now, however, I believe it expedited us getting into the MRI and the MIBG in such a timely manner. I just don't like it when we use up all of our luck on Hospital Efficiency! I'd prefer we saved some luck for Good Results.

Hangin' in there...
Lara

MRI Read...

Hans and Kevin not posing for me tonight!

Hans tonight watching his movie...

Discoloration and swelling at the sight of pain in upper right arm. While there are still a couple of possibilities, one possibility is a second recurrence of NB. Next, we will do an MIBG scan. if we have any luck, they will squeeze us in tomorrow. If not, we will wait have to wait until next week. Staying put at the hospital for now to control pain. Hans' pain seems like it is beginning to limit his range of motion - he's eating and drinking primarily with his left hand now.

If MIBG is positive, it means NB is back and we will treat as quickly and intelligently as possible, in consultation with CHOP. If MIBG is negative, then we will do a biopsy of the bone and go from there.

That's the scoop. We are watching the new Transformers movie, conveniently, it came out today on DVD.

Lara

MRI Complete - Awaiting results

We had a scheduling miracle this morning. Hans was first slotted for a 4:30 pm MRI with the possibility of being bumped into an earlier time. He was told to go without food or drink (NPO) all day in the event that he got moved up. I requested an earlier time - I just hate him having to go all day with out food with his history of Hypoglycemic episodes...But everyone just looked at me like I was crazy. In my mind, he should have a Gold Card in his pocket that says, "I can't go NPO long," but I'm sure all mommies feel that way! But, then, we got the news at 6am that they were going to take him first case. Yeah! If only our results will be so amazingly good.

He is already back, and eating and relaxing in the room. He turns into a bit of a grouchy bear after anesthesia (he had to be sedated with Propofal for the MRI) so I am getting him what he needs and giving him some space! Now we wait. I have no idea when a radiologist will review the study and when our docs will inform us of results. I just hope whatever it is it's very treatable.

He was pretty funny last night. Elle had a well child visit yesterday. Hans talked to her and got all the gory detailed of the three shots she needed for immunizations. He wanted to know how bad it hurt and where she got each shot! At least he's not the only one in our family getting all poked up.

Lara

Oh, My Baby

We are not getting off this rollercoaster yet. As soon as I post of good news/no problems, then things take a turn. Sunday we had a great day. Hans was low energy, but he helped me around the house and yard and we did some shopping while Kevin and Elle were cheering in Orange! (GO Dynamo.) Then, he was good all night until about 9:30 pm when he started to complain about arm pain. He is usually so stoic/tough/not a complainer, that we clearly knew something was wrong for Hans to have pain that made him actually cry. And, he is the one who finally made the decision to go in to the hospital. This is pretty unusual for him.

We got Elle to Michelle, and then hit the ER at midnight. They accessed Hans, gave him IV morphine, and the second dose actually got the pain finally under control. We did a second xray which looked unchanged from Thursday xray. We are now waiting in a relatively cushy/comfy 9th floor room for an MRI. I don't know if it'll be today or tomorrow, we haven't even seen the docs round on us yet. But, Hans' pain is under control and he is sitting up playing video games with his daddy.

Dodie, our Sparrow Clubs Rep, asked me to spread some news to you... If you are local and want to do something to help, you can go out and support the Sparrow Clubs Dinner for Hans tomorrow night Oct 20th from 4-11pm at Chili's. Branch Crossing 9th Grade Campus has adopted Hans as their sparrow child. The funds help to pay for Hans' treatments and our quarterly travels to CHOP. They are a lifesaver. So, if you are hungry tomorrow, and need to eat - go to CHILI"S in Sterling Ridge (Woodlands Pkwy and Kuykendahl) 10% of your order (dine in or take out) goes to Sparrows for Hans. Just ask for a flyer at the front. I tried to attach here - but it didn't work.

Thank you! I'll Keep you posted on what's happening here. I think we are looking at a couple of possibilities here: Recurrence? Bone Infection? Neuropathy? Some thing else? It's hard not to cringe when we see him hold that arm in the exact spot he relapsed the first time around.

Thanks for the love. Thanks for the thoughts and prayers. Thanks to Michelle for being on Elle duty this week. Thanks to Alana for helping out with Honey. Don't know how much longer we'll be here, but hopefully not tooo much longer!

Lara

In Action

Hi Guys,
Just a quick post to say that Elle rocked the talent show. It was so fun. I had some butterflies, but I don't think she did. She was one of twenty of the 600 kids at Wilkerson who "found a nerve", as the teacher MC said. She was one of two kids to rap, one of two kids to go without musical accompaniment. She had some moves. She got rousing applause. We had fun! I was also proud of my troop too! Our girls (ten total at the school) were totally overrepresented in the talent show - with 4 entries. It was cool! So I'm a proud mom and a proud former troop leader.

I hear E did well in her game with a good turn in goal as well as in the field. I hear she let no balls by on her watch and did 4 blocks, one being truly impressive! Thanks to the team manager, Shawn, who forwarded me this photo. I've been having tech. difficulties with my camera lately and haven't had much to post. Gotta get on that. Sorry.

I had a good day at the conference. All these Docs were nice enough to spend their Saturday with the parents. Athena and all the volunteers did a fabulous job! Pat with the CNCF is the best. Vickie is taking the lanyard thing through the roof! Check out this link if you want to see the President of the United States of America, Barack Obama, talk about both my friend Erin B, and lanyards! Forward to min 26:30
http://c-span.com/Watch/Media/2009/10/16/HP/R/2436/Pres+Obama+Pres+George+HW+Bush+Honor+Volunteers.aspx

In Hans news... no new complaints of pain. He seems to be bearing weight on that arm and everything. This is good.

Lara