starting week 2...

Hans and Elle in the Lobby this evening

Grandma Stephanie (lara's mom) at the Liberty Bell yesterday

Lara and Elle Thanksgiving morning at the Ronald McDonald House (first RMH ever)

Here is Hans a few days ago as the MIBG infusion was going in. Notice the plastic sheet and the lead-lined panels. They rolled in a special cart for the infusion.

Once again, I have failed to capture Kevin on film this week...

Hi again,
I finally got my laptop hooked up to add a couple of pictures. Hans is doing alright. He is really very very low energy and not at all peppy. He hasn't been up for much at all. We think he is okay, though. With no fevers, we haven't called the on call docs all weekend. We are hoping his counts are okay - but we have no idea what to expect tomorrow. It's a little scary that he's not doing so hot given that he's going into another round of chemo - back to back - he's never really had two straight weeks of chemo! Kevin and I were sort of thinking the same thing, that he hasn't looked this puny since he came home from Bone Marrow transplant in May of 2007. He has been sustaining himself on chips and salsa and Sprite. He is also making his daily trip for ribs. He isn't complaining about anything, but he has said that his leg, and then his feet are tired. But, tingling and numbness were some of the temporary side effects...

Even though Hans hasn't been up for it - we have been able to break out in various groups for some sight seeing - the Farmer's market, Christ Church, Ben Franklin's Grave, Betsy Ross House, The Liberty Bell, Center City - etc... We've also spent some time with Kevin's cousin Andy, his wife, Krista and we've met their cute little 2 year old, Ruby. Elle went to the Zoo with them one day last week while Hans was inpatient. We also went to a very cool old church this morning- St. Agnes and St. James and found a precious little statue that looks much like our Hans, if I'm able to I'll try to upload a picture (I don't have one yet). The girls also snuck out last night to actually go watch Twilight - yes, I do indulge in reading the teen vampire/werewolf romance series and since it was filmed and set in the northwest, we went to check it out!

Kevin and Elle fly out early tomorrow morning to go back to school and work, and my mom, Hans and I will stay here at the Sheraton until at least Tuesday, when we can see if we can get back into The Ronald.

Thanks for keeping Hans in your thoughts and prayers. A few others in the fight against NB and relapse on my mind these days as always are, Patrick, Erin, Colby, Will, Sam, Layla, Michael, Sirine, and my friend Kelly, as well as all the angel families as they go through this Holiday season without their precious babes this year...

Lara

Discharged!

Hey there-
We had a discharge day! Yay! I have to say I am happy to be out of that room. And I know Hans, Kev and the rest of us are too. It was a crazy set up. I am willing to offer my consultation advice to hospital administrators for streamling, efficency and comfort...I haven't figured out how to get them to listen to me, much less pay me thousands for my brilliant insight. Aren't I an expert by now???
Anyway - back to Hans. He is doing fine! He is very happy to be Foley-Free - VERY happy about that. He got his Day 5 of Irino, a quick MIBG scan, and he was de-accessed today and we were out the door. No fever, no vomiting, no bad counts, nothing but a little defiant meds-taking behavior. But, for now it's all good.

We had to check out of the Ronald McDonald House late tonight. We knew we'd be needing a room at the Sheraton for a few nights since The Ronald has much much higher standards than the federal government for being 'Hot' with radiation. Even though Hans measured just a 2.2 today, he can't go back there til Tuesday. So, we are all getting set up at the Sheraton now. We have the weekend off, and just hope that Hans continues to do well. We'll go in for chemo on Monday, he'll get more counts and we'll take it from there.

Have a good weekend, thanks for checking on us. We are glad we are done with that first week of MIBG therapy and are easin' on down the road...

Lara

T-Day

Hey there, Happy Thanksgiving.
So - for a little update. Things are going okay. Hans' radiation level is coming down nicely - he just checked out at 5.5 millirankins. That's great. BUT - he is having some nausea. This is usually no big deal, but with his Endocrinology issues and the Adrenal Insufficency we are sometimes chasing our tail with electrolytes if things get out of whack with vomiting. He was given an emergency injection of his hydrocortizone about an hour ago and now is sleeping it off. His blood pressure and HR have been just a bit high, so we are hoping that he levels off and self regulates here within a couple days. Due to these complications (but no fever, yay, and normal chemistries) he'll stay put at CHOP for another day or two. But, hopefully they'll remove the Foley and lift some of the restrictions in the room. It's pretty hard core in there right now.
Thanks for keeping our little cutie in your thoughts and prayers this weekend.

With Love, Lara

Infused

Hi again -
Two posts in one day, wow, when I've been such a posting slacker...
Just wanted to let you know that Hans is tolerating this whole deal fairly well. They have had him on IV Versed since this morning. This helps him stay relaxed and it generally just takes the edge off... It helps him to deal with the Foley catheter and the isolation (we can't love on him and hold him and snuggle with him like usual for about 7 days...) The MIBG went in today over a two-hour infusion. Hans 'radiation level' has to get to a '7' to be discharged. Today, after the infusion he was at a 24. I'm not sure when but they have told us that he could be expected to be out as early as Thursday, or as late as Monday. In the meantime, it's nice that this hospital stay has coincided well with the DVD release of the summer kid blockbusters. Yesterday we bought him Wall-E, Today, Kung-Fu Panda, so we're keeping him interested. Hepped up on versed he isn't doing too much else.

And, even though it isn't our first place to spend the Thanksgiving Holiday, we're quite well fed around here. There is no shortage of food on a children's cancer floor over the holiday. We are fortunate that Elle and Kevin are able to miss so little work and school and that we can all be together. It's also nice that Elle has Grandma Stephanie here to hang with. Elle can't come into the room these days. But, she can sit in the hall, play bingo, cards, etc. I'm sure we'll get in some sight seeing too, eventually.

The rest of our stay looks like this:
Daily infusions of Irinotecan with weekends off.
Monday we'll do another IV push of Vincristine. (Kevin and Elle fly home, me, Hans and Grandma stick around.)
Mon-Fri next week we'll do outpatient Irinotecan.
The following Monday we'll do a stem cell infusion (if necessary) with cells that they have left over from Hans' stem cell harvest 2 years ago.
Weds the 10th we'll do an office visit and all three of us should head out.
We'll also squeeze in one or two MIBG scans before we leave. I'm not sure if these are so much diagnostic, as they are evaluative that the procedure has done the right thing...

That's the scoop. More later.
Love, Lara

Things are rollin'

Hi there -
Just a very quick post to say that things are rolling along at CHOP.
We got here Sunday night, got a room at the Ronald McDonald House (yay, what a blessing and what a truly wonderful charity!) Hans got admitted yesterday for chemo. He is in surgery right now having a Foley Catheter placed to help remove urine as quickly as possible to protect his bladder from possible radiation. Hans will get the MIBG injection today around 1pm EST. We are hoping and praying that we'll get through the next couple of days as quickly and easily as possible. They are expecting Hans to be discharged as early as Friday - and perhaps even Thursday...

Thanks for your prayers this week. We hope to zap that little spot of possible NB right out of this world.

We'll keep you posted.

Love, Lara

Normal?!? Week

Hans riding sissy to school in the bike trailer yesterday morning. He has panda bear with him to keep him safe from trail monsters, he said.


Not much to report here - we are enjoy a gloriously normal week. We have clocked less that 59 minutes in a Children's Hospital this week! How great is that? I know it was less than an hour because I had the rare priveldge of paying just $4 to park at TCH when we went in for labs on Tuesday - the lowest ticket issued is for a stay of less than one hour. I was almost glad to pay it - a minor success...

We just had to go down to have a urine sample collected - for (I think) the first time CHOP ordered Hans' VMA/HVA (?) levels. Some hospitals watch these levels as tumor markers, but since TCH doesn't regularly check them, I am assuming they must not be extremely reliable???

We have been getting great use out of Hans' bike trailer and we've been trying to squeeze in some playdates and get-togethers before heading out. I've been trying to line everything up for while we're gone. As usual, I have a few thank you's:
Man's Best Friend gave us a special 'clinical trial' rate for Honey. I'm so touched that they did this for us!!! Thanks to everyone who donated Contitental miles - we had enough to purchase the tickets for all four of us to travel up there for the trial. Thanks to Ginger, Michelle and Laurie who are helping me out with playdates for Elle after she gets back and with pets and Thanks to Carmen and all the ladies helping me out with the bake sale in my complete absence that day! Thanks to Sparrow Clubs for inviting us out last night - it was fun to get to know some of the kids: Sparrow clubs has been cooking up some fundraisers - anybody hungry??? Check out these fundraiser nights:
Tuesday Nov 25th Red Robin - on I 45
Chili's Dec 11th - (I have to confirm if this is the one in Sterling Ridge or off Lake Woodlands).
And, Chic Fil A (Alden Bridge) - Dec 17th.
For these events, sparrow clubs gets a portion of the proceeds if you bring in a flyer, so go to: http://twhs9.conroeisd.net/Teachers/dniemeyer/Sparrow%20Club
to get the flyer before the event, the one for Red Robin is now posted. Wish we could join you. Thanks and Bon Appetit!

Lara

Philadelphia Update

Hey All-

Hans and I are finally done with scans and clinic visits here at Childrens Hospital of Philadelphia (CHOP). It was VERY busy but Hans handled everything in stride! We stayed at the Ronald McDonald House which is about 8 blocks from the hospital so we were able to just walk everywhere and not worry about a car. The Ronald McDonald House is pretty cool here. It's the first one and its an old 1800's mansion that they converted into rooms. Different volunteer groups come in and make breakfast and dinner everyday and there's lots of activities for the kids. That being said Hans just wanted to go to Chili's everyday for dinner. He is going through a serious Tom and Jerry meat fix right now. Basically any type of meat that he has seen on the cartoon (whole ham (bone-in), ribs, steaks with bones, link sausages, etc.) he eats like a lion. He pounded a half rack of ribs a day here. He cleans the bones like a dog until they're bright white.

As for the hospital, I'm very impressed with CHOP and I can see why it's ranked #1 year after year. That's not any knock on Texas Childrens because Hans wouldn't be here today without their care, it was mainly just little differences. The cancer center here is set up very similar to TCH so navigating the facilities was very easy and super low-stress for Hans and I. The really nice surprise here was the lack of waiting to get seen for appointments and scans. We rarely waited more than 15 minutes from check-in to appointment/procedure/scans. I think this is mainly because they have more equipment (CT scanners, MIBG scanners, etc.) than a lot of hospitals. Their check-in process is very streamlined as well.

Scan results? His last scans at TCH had indicated a possible tumor lesion on the liver and lesions on the left humerous (upper arm - opposite arm that he originally relapsed with). Both the CT and the MIBG scans showed the liver to be clear. His bone marrow biopsy also came back negative. The MIBG did confirm that there is something on the left arm, but its very faint. Other than his arm, there is nothing else that can be detected. Dr. Maris (Oncologist here at CHOP) said the left arm scan is troubling in a good way. The lesion is so faint that it is almost undetectable (though my untrained eye can see something is there that is different). It's possible that it isn't tumor, however given that Hans has relapsed in the exact same place in the opposite arm, Dr. Maris (and Dr. Russell) are pretty sure it is tumor. Basically he said this is about as low a level of neuroblastoma that a person can have and not be in remission. I am really happy that what we have been doing since Hans relapsed has gotten him to this healthy state.

Now that he has a diagnosis regarding the left arm, Hans qualified for a couple of promising clinical trials that Lara and I are interested in.

1)MIBG therapy coupled with the chemotherapy drugs Irinotecan and Vincristine.
In adults the combination of these therapies had a 'synergistic effect' on cancer cells. In other words outcomes were better in some cases than just receiving MIBG or the chemotherapy drugs by themselves. He will also be getting a slightly higher dose of MIBG than if he just did the MIGB therapy without the chemo drugs. Remember, though, this is a clinical trial and there is no certainty that this will have better results in children than the traditional treatments. It's possible the side effects might be worse with little or no benefit in treating the disease. This is a little scary because what if we are wrong and there really is no disease in his arm right now? Dr. Maris freely admits that some may consider this treatment a 'little agressive', but Lara and I are on the same page with him. That's why we came here in the first place because we cant do MIBG in Texas. His thought is that this is about as low a level of tumor you can have in relapse - so why not just knock it out while the disease is struggling? I couldn't agree more. Neuroblastoma sucks. It's always there hiding and waiting. Hans has done very well with Irinotecan and Vincristine in the past with very few side effects compared with some of the other drugs. We'll just see how the combo of drugs and the MIBG affects him. As before, one of the big risks is secondary infections, particularly when you are using the line all the time to administer things by I.V.

2)ABT-751
This experimental drug works by killing cancer cells and may inhibit the blood supply feeding the tumors. We are somewhat familiar with this drug because several of our friends at TCH have or are currently on this treatment. One of the great things about this is that there a relatively few negative side effects and you can remain on this drug (taken orally) for up to 3 years. Dr. Maris has a lot of experience giving this treatment and in his opinion the best results he has seen is with patients with very minimal disease at the start of treatment. In these kids with minimal disease it often works very well to 'stablize' the disease and prevent it from spreading. We are not choosing this option and that is a very tough call given that Hans has very minimal disease. Lara and I really don't want to stablize the disease. We want to be rid of it if at all possible. That's why we are going with the MIGB treatment. The cool thing is that if the MIBG treatment works, then we can still give Hans the ABT-751 drug (though not on the clinical trial and at a different dose) to help prevent relapse. Dr. Maris said he has a few kids who, like Hans, have relapsed 2-3 times and once the went into remission again they have been on ABT-751 for three years with clean scans and are ready to go off treatment. This would be the ultimate goal for Hans.

So now it looks like we will be coming back up to Philadelphia on Monday Nov. 24 and be here for about 3 weeks. He will be inpatient for about a week and then receive outpatient chemo for the remaining 2 weeks assuming everything goes smoothly. He will then come back in January for more scans and check-ups. Dr. Russell will continue to be his primary doctor and we will do everything we can at TCH, but since he is on the clinical trial, most of the major stuff/scans/appointments have to be done in Philadelphia.

We will keep everyone updated as things progress over the next week. I can't say enough cool things about little Hans. He is probably the healthiest we have ever seen him and he has such a good attitude about getting poked, thrown into weird scanners, etc. He is walking around like a little Star Wars Ewok because of his bone marrow biopsy but he never complains. He's awesome. He's still a tiny 31 pound five year old but he is getting really smart. I've loved being around him this week to watch him take a new, stressful situation in complete stride.

Lots of love and thanks to everyone for helping make Hans's recovery happen.

Weberlings

Lunch for Life!

Dear Friends and Family,

As I write this note, Hans has just passed the 2 year anniversary of the diagnosis - Stage IV Neuroblastoma, and more gravely, he just passed the six month point of his relapse. We are very pleased with Hans and the way he is doing now. It seems that the disease he now has is minimal. Hans seems to be feeling quite well. He really enjoys relaxing at home – he has become a very skilled gamer and he is quite adept at ‘transforming’ his small army of Transformer robots. He also enjoys going for bike rides and spending time with family and friends. He loves his dog, Honey, and he is a little joker. He has a voracious appetite despite his small size; our little lion cub. We feel just such privilege and joy in loving him and being loved by him.

I shared with many of you an article that came out here in The Woodlands last November. The story covered the four children here diagnosed with Neuroblastoma. There is one sentence from that article seared into my mind. I don’t know if you remember it the same way I do – but I cannot shake it. “The median survival time of a child who relapses with Neuroblastoma is 8 months.” (Conroe Courier, November, 2007.) It should be terrifying to be six months into this thing. But, we must choose hope. We have suffered great loss in our community of friends this past year. At TCH alone, we have now lost Haliegh, Carlie, Chloe, Ryan, Blaine and Chloe, all to relapsed or ‘refractory’ (never went away in the first place) disease – this year alone. It has been brutal.

It has struck Kevin and me from day one that there is only one thing that is going to increase our kids chances’ – Research. Last month was Childhood Cancer Awareness Month. One night I took the kids to Chili’s as they were promoting the Month and contributing to research at St. Jude’s. I found it remarkable that in 1962, when Danny Thomas founded St. Jude’s Children’s Research Hospital, children with leukemia [ALL, I presume] had a 4% chance of survival. Today the survival rate is over 90%.(As per the Chili’s Children’s Menu – October, 2008.) The only thing that closed that gap and saved those lives is research. We’d love to see similar increases in Neuroblastoma survival rates in the coming years. Today, a child with Stage IV NB is given about a 38% chance of survival, and once you have relapsed, the numbers are much, much smaller. To have HOPE, we can only look to specific cases of success and cling to innovative new ideas and research. We absolutely refuse to give up HOPE. We are committed to doing what we can to fund a cure. The way Kevin and I see it is the longer Hans can hang in there and survive, we are buying time for the brilliant research scientists out there to roll out the silver bullet.

So, I come to you again, and ask that you consider skipping a lunch out this month. Brown bag it for a day and give up $5- $10 (or more) in honor of Hans and his valiant fight against this aggressive cancer. An NB dad from Dallas started this Lunch for Life program a few years ago. The donated funds go to the Children’s Neuroblastoma Cancer Foundation. I can vouch for the fact that the funds are well used. The CNCF makes grants to clinical trials that haven’t been funded through government funding, or pharmaceutical companies. When you make a donation, your name goes up under Hans’ giving tree, and a Christmas ornament is placed on his tree. He loves to check out his tree and see his ornaments grow. I cannot tell you how proud we feel to see each of your names under Hans’ tree. Through the coordination of kind sponsors, for each tree Hans fills, he receives a $25 gift card to Toys R Us. We are also entered for a family trip to Disney World with each donation. Simply go onto www.lunchforlife.org and click Donate Now, and highlight Hans’ name.

We appreciate your support this month as we mark the second anniversary of Hans’ diagnosis. Two years ago our course was charted on a very different path. Since that time, so many have helped us in so many ways – we couldn’t have come this far with out you, and we appreciate your support in the cause that is not only nearest and dearest to our hearts, but the one that could quite feasibly save our boy’s life.

Thank you.

With Love and Gratitude,
Lara, Kevin, Elle and Hans

Hi -
We had a quick counts check on Tuesday and found out that Hans is doing just fine! His counts look good - in fact everything is pretty high. We are so pleased that this treatment is tolerable and effective! Hans has been exploring his taste buds and his latest thing is ribs. I've mentioned that I'm pretty much semi vegitarian, so exploring the world of meats is not my forte. But - we've managed to squeeze in a few trips to Chili's and Kevin is pretty capable on the grill. We also made an exciting purchase - a new bike trailer! (Thank you Sparrow Clubs!!! We LOVE our Highlanders!!) Hans was outgrowing his bike seat and he started to dislike it so much that he wasn't wanting to ride bikes. That was no fun since we have really great bike trails here in The Woodlands. He was very excited about getting the Burley and now he's happy to hit the trails. He says, "I very like my bike trailer." Of course, from the bike trailer he can do things like transform his transformers and carry a pizza (Hans made these observations at the bike shop). I'm just glad he's willing to go for more rides. It's very nice!

We are planning the Philly trip next week. We did get word yesterday that there may be an alternative to the MIBG. We do sort of feel like we've been on a roller coaster, and planning is impossible. But, I guess we're all ears!

I promise to post my lunch for life statement by tomorrow!

Lara

CHOP CHOP...

Hans, this morning, doing one of his favorite things, transforming his Transformers - he usually has them all out on the coffee table, he transforms them all into vehicles, lines them up, and then all back into robot form.

Garage sale gurus! Diane and Athena's dad, Athena, Lois, Scott and me...

Trick or Treatin' up at our shopping center - Elle, as Elizabeth Swan again!, Morgan as spanish dancer, Michael as Ghost buster, Ryan as Poilceman, and Adrian as soldier

Hi -
I don't know why it has taken me sooo long to post.
We got the news last WEDS that Dr. Maris, did in fact see enough on the scans, (when he got them the way he really wanted them) to go ahead and do the MIBG therapy at CHOP. This is kind of a big deal - now it's on again. I had sort of gotten accustomed to the idea that we perhaps wouldn't have to do it. But, we shall forge ahead... Really - there was just the one spot on the arm, and the liver is still a ?? b/c it is not confirmed on a CT - a lot of docs don't regard it as disease.
There is a lot that needs to be worked out - will we be on clinical trial with MIBG /Irinotecan - or will we get it on a 'compassionate use' basis - which essentially means that it will not further science, but may help Hans. When will we go? How many trips will we take? All of those questions remain to be resolved, so we're waiting for a lot of details now. They have suggested that if we do go on the trial, we may be have to go up there for a work up beforehand, the therapy, and then for an additional visit later. So - yikes - THANKS FOR THE MILES!!!

Treatment last week wrapped up fairly well. I think it hit Hans a bit harder and tired him out more this go-round. I think it's because he was fighting off a cold as he started, so he was a bit down out of the gates. He was sleeping a lot toward the end of the week - and by the time Halloween rolled around at Day 5 of the chemo - he wasn't up for much excitment. He was happy to hang around at home and recieve hugs from a few special friends and neighbors and help pass out candy - while Elle was out securing enough sweets for the two of them for some time. Hans also got a new Wii game which seemed to match his energy level over the weekend nicely - so he really wore daddy out on the Wii. Kevin has been a pretty good sport about logging many hours of gaming in with Hans and they've now solved Spiderman and are on to Star Wars...

Athena did a great job of putting together the Garage Sale. She raised $1,700 for NB families! I had fun helping out and getting rid of some junk. I am planning on helping out next weekend at the College Station sale too. Thanks to my friends Anne, Michelle and Matilda who were able to go through some of their stuff to donate for us! I cut out early in time to watch Elle's game. It's fun to watch the girls growing into their skills more and more. It's really fun for me to see them get to know each other and be able to do little plays like the 'give and go'... I am enjoying this season a lot!!!