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

Heading to Philly

Hey - Just wanted to check back in and let everyone know that this cycle went really well, and for some reason, Hans' ANC was still up at 1500 when we got it checked on Friday. Hans' Sodium and Potassium levels are great, but we are supplementing Potassium three times a day! Hans only complained about light sensitivity and eye pain a few times on this round 5. Not bad, we needed an easy round after a sort of rough round 4.

Please, say a little pray for Hans to have clear or improved scans on Wednesday. On this med Hans only receives the MIBG scan. We are so hopping for good news. The only thing that makes me a little nervous is that both cycle 4 and 5 were delayed by one week. Round four was delayed by our (stupid) missed flight and the blizzard, and round 5 was delayed b/c he didn't make counts. I don't like treatment to get delayed. We usually will do everything we possibly can to keep him on track - even in a hurricane! So - I guess that's my biggest fear going into these scans. But, he looks pretty great.

Hans is funny - he wants to go get a gold chain! I am going to try to take him up to the Catholic book shop today and look for a St. Christopher medallion. St. Christopher is his patron saint (for those of you who aren't Catholic, when you baptize a Catholic baby you pick a Saint as your child's special patron.) St. Christopher is the Patron Saint of travelers! Who would ever have thought our little baby would be needing this patronage to see him safely to and from Philadelphia on such a regular basis???
Thanks to Genna and fam and for taking care of Elle, thanks to Debbie and Shawn and Ellen and Dean for carting her around! It takes that village to keep up with Elle! Thanks to our neighbors the ansley's for keeping an eye on our house and pets!

Will post from Philly.

Lara

Round 5 Complete

Just wanted to let you know that Hans now has all 7 days of Round 5 down the hatch. It seems that for some reason the odd-numbered rounds are going better for him on this Millennium than the even-numbered rounds. I have no idea why - but I'll take it! We do think he had a little bug on that last round.

We are actually getting into a little bit of a routine... Homebound school and clinic, and enjoying outdoor fun..flying kites, riding bikes, swinging, playing hide and seek, fun fun fun this time of year with the gorgeous weather!!! Getting Elle to: soccer, student council, clarinet lessons, girl scouts. It just makes you feel a little bit more human when you have something of a routine and you think you know what you can expect. Hans is starting up a program through TCH where Breanna, the child life specialist, comes out to our house to work on special projects with him. I think they are going to have some special times together.

Scans coming up next week. I am not getting too freaked out - but I sure am praying and praying and praying! I would love to hear that the spot is gone, but I know we'll be extremely fortunate if we hear of any continued shrinkage.

I need to say THANKS for all the miles. Michelle emailed me today that we've hit the half million mile mark! That kinda blows your mind. We are humbled by people's generosity and feel this great freedom now to be able to pursue Hans' treatment the way we feel most comfortable. THANKS SO MUCH!!!! WHAT A GIFT!!!

On another totally unrelated note, I know that this health care issue is very divisive, but I should let you know that I'm pleased that, thanks to this legislation, we no longer have to worry that we have a $2 or $3 million cap on our boy's life. We're three and half years into this treatment and our insurance has already paid out 1.25 mil for his treatments. I happen to hope that we have Hans for a long, long time. The way I see it - they haven't quite got the treatment plan for Neuroblastoma and Relapsed Neuroblastoma worked out. There is a lot of room for improvement! They're learning how to treat it on kids like Hans. Does a lifetime cap really make sense? How can you put a price or a value on the lessons learned from these clinical trials? Isn't it worth an investment that will hopefully pay dividends in better, smarter, and less toxic treatments for the children of the future? Could we place a value on any of our children's lives? I was talking to my dad tonight, and he told me what my grandma told him - You're priceless. They are our babies. Our future.

I'm glad healthcare passed. I know a handful of friends and family members who don't have it. I cannot imagine having walked our road without it. I am not lying to tell you that Hans would not have seen the end of November 2006 without healthcare. My wish is that every child, every American, would have access to the same should they find themselves facing an awful diagnosis. How could we not? Is it not a basic human right, on par with the free and appropriate education that we provide to each of our citizens, at the very least our children??

Made Counts!

Hans and Elle (Elle got many compliments on her boots! Hans should have had a pair, he could have cleared he 42" height restrictions with a pair of boots!)

Elle, Hans and Alex (mike in background)

Daniel and Hans on teacups

Hans on Pirateship

Hans on bee
Hi Guys,
Sorry to not post, but on Thursday we got the green light with a good ANC and we've been out having a fun Spring Break!

Thursday Hans' ANC rose to 1100. Good enough to be out and about, good enough to start Round 5 of Millennium...and knock it back down again! UGH! Hans is already on Day 3. The only adverse effect is that we didn't get the thumbs up to actually start until late afternoon on Thursday...starting the med later has put Hans out of his usual sleep/wake cycle. He has been up 'til about midnight and then snoozing in a bit.

Thursday afternoon after clinic Hans went for a photo session. He had been asked to participate in a "Small Miracles" calendar for the Snowdrop Foundation. He did a good job! The photographer, Alisa Murray, told me that she'd share the link to this shot...I'll share that with you when I get it. While we were out all day Elle was completely spoiled by her teammate Melissa and her parents...they managed to pack in Putt putt golf, a movie and a little soccer practice! Thanks to the sweet Martin family for the gold star play date:)

Friday we went to the Houston Livestock Show and Rodeo. We spent the whole day riding rides and didn't get home until LATE at night. We were supposed to be up and out of the house already at a Kids' Unlimited Foundation Fishing Tournament. But, we realized that Hans wasn't going to be able to handle that after such a late night! Ah well. We met up with Alex and family at the rodeo, and then, we ran into another TCH family. We ran into Victoria and her family. Kinda CRAZY considering like 100,000 people show up to this thing every day. We had gone through transplant together in 2007 and were thrilled to see her thriving. Victoria is 13 and she and Elle were set loose on the big kid rides, while Jessica and I hung out and did the littler kid rides with Hans and little Daniel. Hans kept telling me how much AWESOME fun he was having! THANKS to the Kids Unlimited Foundation for sending us tickets and ride booklets!!! It was cute - most of the workers saw Hans coming and they'd just pretend to scan his ticket. He pretty much had unlimited rides. Hans is a fearless little rider. He is only limited by height...just shy of the 42" mark for a lot of rides. But still had tons of fun. Our last ride of the night was a big ski-lift type of ride that took us 40 or 50 feet over the entire carnival. He loved it, and Elle and I had to pull him back in from peering over the edge. Fearless!

Kevin has managed to put all the grass in the back yard! We are happy to have a yard again. This is such a pretty pretty time of year here...not hot yet, just nice and pleasant, we don't want to come inside! It feels so good just to have some normal times.

We are also happy to learn that Hans scan stay on track for March 30 and 31 at CHOP.

Thanks for checking up on us.

Lara

Finally, some new pics!

Hans and Kevin on Sunday, after the shaving

Couldn't pick which one to post, so I got them both

Me and Elle after her hair cut Friday night

Sam and Elle

Hans on Horse at Family Camp

Elle on canoe

Hans at the Family Camp Petting Zoo

Hans on Horse

Hans and Kevin on Canoe

Hi there -
Here are several photos, sorry it takes me so long to get a photo up! Anyway, despite the whole low counts thing, we've been doing just fine. We are lucky that Hans has dodged a fever and a hospital visit! (knock on wood) We go back into the clinic tomorrow to recheck counts and I HOPE we make it. The message from CHOP is that if we make counts this week, we don't have to push scans back. We've been enjoying the weather and working on our yard. Our back had become pretty dingy, and we just ordered a pallet of grass, we laid it out back yesterday and hope it takes off.

Hans is very interested in gardening and was a great helper with a couple flats of flowers and some tomatoes and strawberries, and a couple of herbs. I was thinking about getting garden plot through our community center but it looks like we've just got a garden patch in our front bed. (If we put it out back Honey will chomp it up!)

I'll keep you posted on counts.

Lara

sam and sydney

As soon as I made the last post, I made my usual stops along the Internet - two of my favorite sites happen to be: www.teamsam.com and wwww.carepages.com/carepages.sydneymarie
I couldn't believe what I read, both of these two kids, 10, and 9 years old lost their battles with NB on Friday.

I've been following these two kids for at least two years. Each family offered something unique to the NB world. Neil and Margot, Sam's parents, have trotted the globe to hunt down a cure. They were among the first to respond to my questions and queries about relapse options. Rhonda, Sydney's mom, writes Sydney's updates with this infectious optimism, infused with the belief that we can actually save these kids. Sam and Sydney were active, bright, sweet and special and wonderful. I keep thinking, if these parents couldn't save these two, with all the love, the commitment, the compassion, the best doctors in the world, what hope is there for the rest of us?

Just like each of our kids are special and wonderful; with NB, without NB, with Autism, Down Syndrome, or the Gifted and Talented students, or the captain of the cheer or football teams. These are our babies. The love we feel for our children transcends all things. When your child has a life-threatening cancer, I believe that that LOVE motivates every single action you make.

Moms like me don't just write our blogs to keep you up to date on the ups and downs of one kid's blood counts. It's not just about one child. One child opens your eyes to this whole little world where there is this injustice, this unfinished business of finding a cure. We hope that this window will open your heart and propel you into the action of making a change. Each loss underscores the need for action, i.e., funding ongoing research until a cure is found. We must be motivated to do do more, and to do better, because there are angels amongst us.

Lara
PS - the counts update - Hans didn't quite make counts today (Monday), but he's showing improvement and is better than halfway there.
Thanks to Kathy, Holly and the Conlon Family for supporting Kevin in Shaving for Seany!
I'll get to pictures in a day or two, promise, we've got some good ones to put up.

Didn't make Counts x2 :(

As much as I'd like to be reporting otherwise, Hans didn't make counts again today.
His ANC rose only 20 points to 220 - a far cry from the req'd 1000 to start Round 5 of Millennium. Platelets came up to 119, but HGB is at 9.8, on the low side for Hans, but well above the transfusion mark of 8.0.

I have to say I'm sad about this! We got an email from Dr. Maris explaining that he has seen a few cases of late ANC drop on this med, so he attributes it to a side effect of the med, plus/minus a possible virus.

We'll check counts again on Monday.

In the meantime, I'm cancelling tentative plans left and right...no crawfish boil with friends on Saturday night, no Hans' first sleepover with Alex, no bowling party on Monday, Hans and I will possibly stay home while Kev Shaves for Seany... (But it is an outdoor event, we may try to make an appearance). It's kinda sucky. The kids are starting spring break tonight. It's not the typical cheerful buzz in which you head into a vacation.

BUT...oh my goodness, we have him, he is fine. He actually looks great and is relatively full of energy. The weather is perfect for park and outdoor outings. It's a catch 22 on this med. What are you gonna do? It's killing the tumor according to the last two scans, but it's beating Hans up a little bit too.

One last pitch for Saint Baldricks. It's happening Sunday at 4:30 at the Goose's Acre in The Woodlands. Feel free to come on out and hang out (there is no entry fee, just show up and order what you'd like), or go online and chip in a few bucks, www.stbaldricks.org (Click on Find Participant, enter Kevin Weberling, then check Shavee) Kevin's going to go skinhead along with 3 TCH docs, at least 3 mamas, and a handful of dads and neighbors. (Not me - I don't think I could quite pull the look off!) Elle just decided to grow hers out again, we got her hair cut tonight. They straightened it too and she looks toooooo grown up!

I'm sure we'll be fine - but it's an adjustment. I have been crunching some numbers the last couple of days. This next round of Millennium will be Hans' 33rd Round of Chemo he has endured in his young life. That's not even including his 6 rounds of Accutane. What can you say about that???

Lara

Didn't make counts:(

Wow, for the first time that I can remember (excluding the time we had a high liver panel when we were trying to start ABT751) Hans didn't make counts. This means that Hans' counts haven't recovered enough from the last round of Millennium to start the next round, which should begin on Thursday. There are parameters that are very specifically outlined for kids on a clinical trial, if those numbers aren't met or exceeded, the meds aren't distributed. (On this trial, we get the med directly from CHOP.) But, anyway - Hans' HGB was fine at 10.4, his platelets were 97, just 3 points lower than the 100 lower limit, and his ANC took a major nosedive to 200, down from 1000 on Friday. It has to be 1000 to start the med. Ouch. Yikes. It's weird and confusing, but I'm really not too freaked out about it. Dr. Russell suggested that he's probably fighting off a little virus. I have heard of many many kiddos who repeatedly didn't make counts and they are enjoying long healthy remissions. So, I'm not too freaked out about delayed chemo. I guess the best and only truly 'acceptable' reason for his chemo to be delayed is if his little body isn't ready to handle it. The hope is that it will come up and we can start soon. We have counts re-checks scheduled for Friday and Monday.

The good news is that he is doing just fine. We have to limit his germ exposure right now, but other than that he is doing great. Good appetite, lots of spunk! He was a solid 16.0 kilos today - that's about the highest I've ever seen his weight. He is looking just a touch chubby for Hans, ha!

In sad news, little Layla Grace lost her fight today. Sweet baby girl. www.laylagrace.org
My heart goes out to their family, and the whole staff as well. You know these kids work their way into so many hearts. I wonder how they sustain themselves through such loss.

Lara

Ups and Downs

Hi,
Clinic went okay on Friday (just long!) Hans' Potassium came back up, I guess we just need to supplement more when he is under stress and on stress dose steroids. Hans is tricky! He was looking great Friday night to welcome his daddy home from his trip, and all day Saturday - but then he seemed a little off this morning, but now he seems to have perked up.

We'll go back in for counts and an office visit on Tuesday. Unless we need to go in sooner, hoping not! Hans has school on Monday and I just hate for him to miss his sessions.

I am just trying to keep up with Elle this weekend. Yesterday she got permission to miss soccer to compete in Destination Imagination for the first time. Her team had fun, but didn't place in the top three. The up side is that her friday mornings are free again, and we don't have to try to figure out how to possibly make it to compete in Regionals, State, National and possibly World Competition! What an event - I've never been! There sure were a lot of dedicated adults volunteering their time to coach and judge. Wow. She also had a cookie shop last night at Hobby Lobby. I was able to drop her off and attend Shannon's kick off party for the Shaving for Seany St. Baldrick's event. Hans' ANC was just a little low for him to do much partying, but we worked in multiple trips to the park and lots of fun at home.

This morning, Elle and I woke up very early to run (jog!) a 5K. My friend Tamiko encouraged me to sign up, and I couldn't come up with a good reason not to, so I did. Elle instantly said she wanted to join me. The guys slept in and we left for the run in College Station. We finished! I can't give you our time because we didn't start with the pack, but we all had fun. Elle actually finished about 5 minutes ahead of me, but she was there waiting for me at the finish line. She ran with Tamiko's friend, Eman. Can you believe all four of us forgot a camera??? It just goes to show me that my life doesn't have to run like clockwork to be able to take a little time for health and excerise. My training schedule was far from perfect. I had planned to run, Thursday, for example, but obviously that wasn't going to happen, being in the ER til 9pm.

Now we are just crossing fingers for Tuesday's counts. And, actually for the first time on Millennium we have to make sure Hans' counts bounce back high enough to start a new round. Yikes! I don't even know what the parameters are since we haven't had to watch for it yet. But, as of Friday, the Plts at 64, were probably questionable, and ANC of 1000 and HGB of 9 probably fine.

Thanks for checking up on us.

Lara

more excitement!

UGH. Went in for counts yesterday and got detained/or rather sent over to the ER for a low Potassium. The potassium can drop as we stress dose Hans for steroids. It was just a little bit of a mess because we had a late counts appointment and got the results about 5pm. They have no mechanism for taking care of us at that time of day other than to register us into the ER. I think they could streamline that system, but I rarely want to relive the drama to write the letter of complaint.

Ah well, they gave Hans an oral dose, noted that he looked beautiful on montiors, and rechecked his counts, and since his potassium came up by .1, we were allowed to go home. Only to return again this morning to make sure they are still looking good.

His counts were weird. His plts had dropped from Monday's 124 to 64, and his HGB had dropped from Monday's 12, to 9.3 But the ANC was up from 200 to 790??? I actually really thought Sunday and Monday would be his low point, so I'm a little bummed. We're not on ABT751 anymore! This Millennium stuff is harder on him. But, I hope and pray pray pray that it is going to wipe that disease out.

So - headed back in for counts. At least I have a good book on tape to listen to - between replays of Big Time Rush...

Kevin is in Oklahoma this week. I guess it really does take a village. I need to thank Jill, Shawn and Michelle for caring for Elle last night while we were detained in the ER.

Lara

In the news

Some of our friends and comrades are in the news these days, for good and for sad reasons.

A little girl at TCH, Layla Grace, whom I haven't yet met, relapsed just after completing transplant. She is not in a good place. Please send some love and prayers her way. Her mom just shared their story with Ryan Seacrest on his radio program earlier this week. She's a beauty! http://www.ryanseacrest.com/audio/?MediaID=628

Also, Team Shaving for Seany made The Woodlands Villager this week! Check out the link - http://www.hcnonline.com/articles/2010/03/04/woodlands_villager/news/wv-n_st._baldrick_s_0304.txt Well done, Shannon, on promoting this event. I found out from this article that you can also come out the day of to get a Locks of Love haircut if you have 10 inches to donate. Check it out at www.stbaldricks.org. Again, Kevin is signed up to shave. But I must say that lately a good fourth of our plans end up not happening due to some unforeseen circumstance, but I'm keeping my fingers crossed.

More later!

Lara

Roller Coaster

Hey there,
I lost an entire post last night - that hasn't happened in a long, long time.

I thought I was going to update about a packed weekend - everything from a sleepover to finishing a group science project terrarium, finding tadpoles, an away game, a girls lunch and Ikea shopping spree, a lanyard workshop, a dad and kids movie date to The Lightning Thief, a family afternoon at the park, throwing the ball to Honey, drilling shots into the goal.... delivering Girl Scout Cookies. But, alas, with Monday came much more excitement. We did notice through out all of these activities that Hans wasn't quite as spunky as usual, wasn't quite eating as much as usual. But, we had hoped he was eating enough.

We had all gotten up early to do our thing, leaving Hans to sleep in until about 8, when we went to wake him. Kevin was already en route to work, and Elle heard him "moan". When I went to get him, he was cold, clammy, not waking up, and there was a little bit of drool coming off of his lips. Another Hypoglycemic event (aka coma) was happening. I told Elle to call 9-1-1, brought Hans downstairs to the couch, and ran to the car to find the emergency bag with his injections. I was shaking like a leaf as I pulled out everything I needed to administer the two life-saving injections, Solu-Cortef and Glucagon. Elle did great on the phone. I heard her reeling off stats...Arenal Isufficient, Neuroblastoma, Hypoglycemic, Unresponsive. She is a pro. I would have had a very hard time doing this without her. I got the two injections into Hans' legs and he had virtually no response. He was breathing and had a heart rate, just unconscious. Elle called Kevin, and he said that as soon as he saw her name on his phone, at 8:20 am, that he knew what was going down.

The ambulance arrived and they packed Hans into the aid car. I am not so cool in a crisis, so I hadn't even taken the time to fumble with the glucometer, I just skipped the reading and went ahead to the treatment. They took it in the aid car - it was 17 - surprisingly low, especially considering I had given the two interventions about 10 minutes prior. Normal range for a 'fasting' blood sugar is about 110. The medic gave Hans another injection of Glucagon (I guess this med releases any sugars stored in the kidneys, the problem was, Hans probably didn't have any sugars stored in his kidneys.) The medic was afraid to access Hans' port with the only needle they had in stock, and she didn't want to try and fail to get an IV. I actually tried to encourage her to access him with the huge adult needle. I shot off a text to a few family members and friends. I prayed the Hail Mary over his cold little clammy bald head. I knew he could pull through this, but I started to wonder, how many times can he pull through this? This was the fourth time we've had this scary event.

By the time we got into the local ER and got an IV going, Hans had probably been in his state about 90 minutes. Fortunately, he started to come around once they gave him three doses of D-25 (Decadron), and a couple more doses of D-10. He finally started to respond. His first move was to open his mouth and lift his tongue for the nurse to get a temp. His temp wouldn't register. He was that cold. His next move was to request Jack in The Box. Oh, my baby!

Kevin made it to the ER. Once Elle could see that her brother had responded and was fairly stable, I got her and her group terrarium project to school. When I got back to the ER, Hans was alternating between eating and sleeping it off. I told him that he wouldn't have class today with Ms. Kathy, his eyes opened wide with a proud brave look and he said, "I could do it!" The funny thing is that when I called Ms. Kathy to cancel, she had the exact same response, "I could come to the ER!" These two are meant to be together! But, I had to be the wet blanket and cancel, thinking of a lesson going down in a tiny ER room with no table, nurses coming in and out, and an exhausted Hans.

It is taking us a day or two to shake this one off. It has me thinking of and counting up all of the close calls that Hans has had: 4 of these Hypoglycemic Comas over the past 2 1/2 years, two serious line infections that landed him in the PICU, and the horrible time he had coming out of his first surgery with the fluid retention and all of the life-threatening complications. All of this has me admiring the strong little soul Hans has. He is a fighter. He gets intense and goes somewhere deep within himself to pull through. The will to live...the life force that we all have, has kept him from going over the edge at some very serious and dangerous moments. Hans has lived an amazing story. I'm honestly not sure to think of him as charmed or cursed. I'm just deeply moved by his stamina and his endurance and this odd little zen-like spiritual quality about him when things get bad.

That's enough for now. I had a great talk with our Endocrinologist yesterday. I'll write more about that soon - I think we've had a breakthrough regarding how to take care of Hans and prevent these Hypoglycemic events.

Lara

Everyday is an adventure. Everyday is a gift.