Happy Haunting!

Here we have Hans as Buzz Lightyear, Elle as Elizabeth Swan of Pirates of the Carribean, Michael as SuperMario, Morgan as witch, Adrian as PowerRanger, and Ryan as The Boss. Hans actually had a remarkable amount of energy. We did a Halloween Party at our old Playgroup, we trick or treated at Panther Creek, our neighborhood shopping center with friends, and trick or treated the neighborhood with our neighbor Jack and his dad Mark. We have TOO MUCH candy. Please tell Elle and Hans your request. Dr. Russell has already put dibs on the Snickers, and Dr. Rainusso the Nestle Crunch. I'll have to break it to him that it looks like no one was passing those out though:) Thanks, Ginger, for taking this picture and getting it to me ASAP!

A few pictures

A few pictures, from Oktoberfest at church saturday with Carmen, Jim, Ryan, Michael, Ginger, Adrian and Morgan, Elle and me. Elle and Ryan participated in the banana split eating contest and Michael won the costume contest! (Kevin and Hans stayed home.) And then a couple at the park and then Carlie's Fundraiser at Dosey Doe's Restaurant with Carmen's mom, Monte, too. Kev was there - we just didn't catch him on film!

No news on the bone marrow yet - hopefully it'll be good news when we get it. Hans just started round three of Accutane yesterday at an increased dose of 50% more. Hopefully that'll be okay for him. Accutane is pretty rough on him, and it's hard for us to see him on it! Thankfully, after this round we're halfway through it!

For Halloween, Hans is going to be Buzz Lightyear and Elle will be Elizabeth Swan (from Pirates of the Carribean).

Our camera pooped out on us, so we're begging and borrowing photos from friends for now! Thanks Carmen for these, and I think Michelle will send some along from Saturday, too!

Lara

Quick Good News Report!

Hans' MRI, CT, Bone Scan and MIBG have all come back clean/No Evidence of Disease! Whoo hoo! Yipee! Hallelujah! Now we have only to wait a couple of days to get today's Bone Marrow Aspiration results which are fully expected to be good. Today was miserable for Kevin and me, just because we worry so much about Hans's Hypoglycemia and he had to fast until about 1:30pm today! But, it was at least incident-free. Hans did very well yesterday and Carmen was sweet enough to accompany us for the day yesterday. Carlie's scans showed shrinkage! Please think of our little friend Ryan, "Batman". In some ways he is starting all over again as he fights this relapse!
Love, Lara
PS Thanks to all of you who have supported Hans' LFL Campaign - it's going quite well! Check it out at www.lunchforlife.org! Thanks.

Please Give to Hans' Lunch for Life Campaign!

Dear Friends and Family,

I am reaching out to you this morning to ask for your help. As most of you know the last year of our lives has been quite a battle against Neuroblastoma, a Pediatric Cancer that struck our sweet little 3-year-old boy, Hans. We all have endured and persevered through a year of chemotherapy, radiation, two major surgeries, and a bone marrow transplant. I just learned last night that the Neuroblastoma Treatment protocol is more brutal than any other adult or pediatric cancer treatment protocol out there! Hans is a little trooper. In fact every single child we have met throughout this year has amazed us! Despite the fact that Hans suffered some major and life-changing side effects, he continues to live life as a sweet little boy and do what he has to do to stay healthy. He takes his medicine and goes in for labwork and scans on a regular basis. Hans has become a hero to many of our friends and family. Thank you for all your love, support and prayers that have gotten us through this tough year.

But, even though Hans is now healthy and cancer-free, we can’t sit back. Kevin and I are learning how far we have to go. Neuroblastoma likes to come back, it can rear its ugly head again at any moment. Anything goes! More research needs to be done to treat relapsed Neuroblastoma in our kids. Unfortunately, federal funds for Neuroblastoma and other pediatric cancer research have experienced dramatic cutbacks. It’s up to us to secure funds for new and innovative methods to find ways to treat and prevent relapse and to minimize damaging side effects.

Please join us in this fight and give a little through Hans’ Lunch for Life campaign. Lunch for Life (LFL) was created by one desperate dad of a little girl with NB at Texas Children’s Hospital a couple of years ago. Since then, hundreds of thousands have been raised. The idea is:
-You give up the cost of a lunch, brown-bag it for a day and give up your lunch money to save a life.
- If we each just give a little it can make a huge difference.
- 100% of your donation will turn directly into a research grant, specifically funding Neuroblastoma research.
- Just go online to http://www.lunchforlife.org/ and give. Click Donate Now, and fill in your information and select the name Hans Weberling from the drop down bar (it’s alphabetical by first name). Even if you can only give $5.oo it will help.
- You can view a list donors who have given in Hans' name at: https://www.lunchforlife.org/giving_tree.aspx?cid=404 It means a lot to us to see your names under Hans’ tree showing your love and support. Thank you!
- If you’d rather send in a check then donate on line, you can mail in your donation to: Children’s Neuroblastoma Foundation PO Box 6635 Bloomingdale, IL 60108. Just write “Hans Weberling LFL” in the memo.
- Since LFL is a 501 c(3) non-profit, your donation is fully tax-deductible.
If your employer has a matching program, see if your donation to LFL can be matched!
- Then, please forward this email and ask your friends and family to give up a lunch to save a life.
- I plan to initiate a similar campaign each year at Hans’ anniversary of Diagnosis, he was diagnosed on 10/25/06. I feel there is no better way to mark this fateful date than to put energy into working towards more effective, less brutal treatment methods. Until there’s no longer a need! One day…

With love,
Lara Cady Weberling
Mom of Hans, Age four, Stage IV NB, Dx(diagnosed) 10/25/06, NED (no evidence of disease) since 7/07

10.21

Good morning! Elle and I made it back from the campout. It was pretty big fun. Hans was happy to see us this morning, which was really sweet! All is well here, we're just looking forward to Carlie's Lunch for Life Fundraiser at the Dosey Do Restaurant today at 4 pm. I'll write more about Hans' LFL fundraiser tomorrow.

So, a year ago today was pretty terrible. But, at least we figured out what was going on with Hans and we were in the right place.
By 7 am I had already run my 6 or 7 miles with my running group ( I was 3 months into my first 1/2 Marathon training program). I did my run on a loop that was 1 mile longer than I was supposed to go. And, as I walked that last mile I definitely had the sense that that walk would be the calmest part of my day. By noon we had already attended one soccer game and picked up trophy orders for two teams. Trying to wrap up one of our ongoing projects, I had primered and texturized our downstairs bathroom, and then I took a really good look at Hans. He was just hanging out on the couch, lethargic and actually starting to look uncomfortable. I needed something from Home Depot and on the way I called my mom to give her the update. I reminded her that my friend's father-in-law had suggested the TCH ER. My mom told me I should just turn around, eat a high-protein lunch, pack a really big bag for the day and go to the ER. I came home and told Kevin my plan. He said, "Thank you."
I did just what my mom said. I ate a big turkey sandwich, got all ready and even hit Wal Mart to buy a personal DVD player for Hans with the sense that it would be a long day.
I checked into the TCH ER by about 2 pm. Kevin and Elle stayed home so that they could go to Elle's soccer game. Even now I don't feel like typing all of this out. But - hey - I already started.
I did the paperwork and then got right into see the Triage Nurse. I swear that she knew Hans had cancer. The lobby was FULL of people waiting. I went and stood in a one-person line for the restroom. We were called back to our room before my turn even came up. Hans was instructed not to eat or drink. There was a very long wait for the abdominal ultrasound they ordered for Hans. I got very nervous and upset once as I asked the Attending Doctor what she thought it might be. She said, "Well, we're feeling things that we shouldn't be feeling so there are a lot of things it could be."
More waiting. Finally we were called back to the ultrasound room. I think by this time it must have been about 7:30 or 8:00 pm. The ultrasound techs tend to pretty much have a poker face, but a couple of times the tech did a little jump and her eyes looked to bulge right out of their sockets. After what seemed like an hour of pictures, she told me she was going to get the Chief of Radiology. That's when I knew something was very, very wrong. Under normal circumstances you never even really believe Radiologists are back there. You never see the whites of their eyes. You certainly don't want to meet the Chief!
He told me definitively right there on the spot that they had seen a large abdominal mass, definately cancerous, likely Neuroblastoma. I had never even heard of Neuroblastoma. Of course I fell apart. I made it back to Hans' room and we called Kevin. It was awful that he couldn't be with us. We decided he and Elle would come in the morning,and get things ready for a long stay. I called my mom. Then, my cell phone died. It was awful. We went in for a chest xray and I braced myself for the worst. But, no tumors in the lungs. Some how hours passed by without my being able to call anyone. The next thing I knew my mom's friend Pat had booked her on the next flight out of Seattle with her frequent flyer miles. This is one of the single greatest acts of kindness I have ever experienced. I was so grateful that my mom would be with me within hours.
We got a room up on the 9th floor at 2:30 in the morning. I don't even remember who our nurse was that night. I remember making all kinds of calls the very next morning. Teary calls to friends and family. Quitting my job on the spot. Backing out of being a Girl Scout Leader. Finding a ride for my mom from the airport.
Hans just kept saying, "I wanna go home." But, pretty soon as we toured the hospital in those first few days for scans and procedures he started to say, "I wanna go back to that other room." Kevin's mom was out with his Aunt Debi by the next day. We wouldn't leave TCH for 20 days.
You know the rest of the Journey from here, but I felt like getting the whole story of Diagnosis out.

Oct 20

Okay - so today is a good day! Hans just enjoyed a little festival here in The Woodlands and was out and about outside for a couple of hours and came home fine! He generally does better and is more stable OFF Accutane. Elle is up camping with her girl scout troop on their first ever campout after 4 years as a troop! I am excited because I am going to go up and join them tonight. I'm doing the campfire/sleepover and breakfast shift. Elle is happy that I get to join her (me too), but mostly I can't wait for S'mores! He got through the bone scan yesterday just fine without tears. The technician told me he must be growing. They are usually able to capture his whole body in 3 slides but yesterday it took 4! That's great. We'll see what he measures at the Office Visit next week. Poor guy was a pretty good sport when it took them 3 tries to get his injection in. I know the technician felt badly, but three tries for one shot is pretty rough.

Last year today we had Hans' follow-up with the Pediatric Urologist on this date. I remember that morning I was proud of Hans. He had just started to do really well with potty training. We had met his friends for a park playdate that morning and he was wearing undies! I remember feeling puzzled as Hans just didn't have the energy of his buddies. He tired more easily and seemed content to sit at the age of the grass while his buddies ran up the hill. Ginger asked if I'd get his blood drawn. I told her I hadn't thought of that, but that I'd ask at my appointment.

We went in to see the doctor. I remember that it was on the tip of my tongue to have him look at Hans' belly which by this point had become swollen and distended. It almost made me think of a malnourished child. Which made me realize that Hans hadn't been eating well. He'd pretty much scaled back to cereal and PBJ's in the past couple of weeks. But, throughout the appointment I failed to point his belly out. And, being a Pediatric Urologist, he was pretty much focused on the waist down. The Doc ordered another testicular ultrasound. When that came back "fine" the doc really started to think Hernia. He thought Hans had probably pulled something in there. I asked him to do bloodwork (Ginger's idea) and he declined, saying he didn't think it necessary! He told me to email him in ten days and we'd do an in-office procedure. I took him home and Kevin thought it was crazy. He just kept saying "look at him, look at his belly! Something is wrong with that kid!" So, we emailed the doc that we were concerned about the belly. Like I said, we were really starting to scratch our heads!

Lara

Oct. 18th

Today: Hans is pretty happy and independent around the house. I'm happy to report he is eating and sleeping well. We got out of the house yesterday for a play date at the "new" Houston Museum of Natural Science exhibit at The Woodlands Mall. I say new, but it opened back in March of this year and we just haven't made it up there, even though we are museum members! It was pretty cool with twelve full sets of ancient dinosaur remains. They even have a Giant Sea Turtle which is very very cool. It's bigger than a small SUV. Pretty amazing! The boys got a little scared with the soundtrack that was playing in the dinosaur room. It was fun to see Hans out and about and a little bit. It was cute - as soon as we got home he took a massive 1.5 hour nap!
A year ago today: I remember we were really starting to scratch our heads about our little Hansie. Carmen offered to pick Hans up and take him to our playgroup while I got things done at home. When Carmen came back she said that Hans just wasn't himself. He kind of sat by the train table and rested. I just nodded, we had noticed the same kind of thing at home. Even at school Hans was getting time outs for being non-cooperative. This just wasn't normal for him. Our Hans was slowing down and changing. We were just hoping for some answers at our follow up visit with the Pediatric Urologist just two days away.
Lara

Accutane and Anti-B's complete!

Hi,
Before I give the update, I want to share a more positive statistic about NB that I heard up in Chicago and I didn't include in either of my two previous posts. I heard that once you're Stage IV and you've made it through Induction (the initial treatment phase we just completed) and you get a set of scans to show that you're NED (no evidence of disease) 50% of kids will enjoy "event free survival". I think that statistic is a bit more positive than many of the others you hear. If I misinterpreted this - please don't correct me! I sort of hold onto it as a beacon of hope:)

Just wanted to report the good news that Hans has completed his second (0f 6) round of Accutane. It's a relief, because Accutane is pretty harsh, and even though he's only on half of his normal dose now it seems to affect him. It's funny, it doesn't clearly make him more irritable, but it does seem to weaken his whole steroid balance and it seems to make him more fragile in general. Thankfully it's only a "short-term" medication. We have been told that for the next round the docs want to take the dose up by 50%. We'll see how that goes! We also finished up his antibiotics for the little cold he started to get at the ranch. He still has a little bit of the sniffles, but I think he's doing pretty well. Now were tapering down from his stress dose of steroids and are hoping for stability!

The weekend was okay. Hans and Kevin were mostly home bodies to allow Hans to just mellow out. The antibiotics weren't easy on his tummy, so he didn't get out much. I watched Elle's soccer game and her little team is still undefeated! Go Dragons! Elle had her first opportunity to play laser tag at a birthday party and she said we all had to go back. She also got invited to visit a friend's drama class on Saturday and had a blast. She showed me all the Broadway-like dance moves they learned. Then, on Sunday we went and had BIG FUN at the BIG STATE Festival. I won a pair of tickets on he radio. Kevin said that he and Hans were out, so Elle's friend Genna, and her mom, my friend Laurie were "in." It was cool that they were able to come along at the last minute. We saw Willie Nelson, Stock car racing, a couple other bands, and then Tim McGraw. It was pretty cool. The festival food was really awesome. And, the festival was put on by the Parks and Wildlife Department, and I was really impressed with how many recycling receptacles they had there. It's the type of thing I probably wouldn't have thought to buy tickets for, but by winning them, we had a free day of fun, and I had a little girls' day out/off Mommy duty. I sure can't complain about that! I think Kev and Hans were okay with football and one of Hans' favorite things - a visit from the pizza guy!
This week is pretty quiet. Not much going on until the Bone Scan on Friday.
I'll write more later. I'm going to be writing about Lunch for Life again soon. We're expecting to get Hans' lunch bags this week!
Love, Lara
PS Patrick had most of his scans last week and they just got the news that he's All Clear!

My letter

Warning to those who may not want to learn of some of the scary statistics around Neuroblastoma: Don't read this letter.

Dear Senator Hutchison,

I need you to get behind the Conquer Childhood Cancer Act of 2007. Many of our little Texans will be tapped on the shoulder by fate each and every year. We need to fund Childhood Cancer Research in a big way. Each of these children has been innocent of their fate. Nothing they did has caused their illness.

Americans don’t want children to suffer from Cancer. Americans want to spend their tax dollars by putting smart American research scientists to work at finding cures for Childhood Cancers such as Neuroblastoma, AML, brain tumors, Ewing’s Sarcoma and other devastating Childhood Cancers. We need you to make sure that happens.

My son was diagnosed with Stage IV Neuroblastoma a year ago this month. The treatment they have for this disease will only save about 38% of kids diagnosed with this disease. The initial treatment left my son, Hans, with debilitating side effects that he will struggle with for life. He lost an adrenal gland in each of his two tumor resection surgeries, leaving him Adrenal Insufficient. This disorder can be fatal as his blood pressure can drop and he can go into cortisol shock. He needs to be on steroid replacement for life and we have to do our best to determine when he needs stress doses, a function that the healthy human body does so beautifully as it releases adrenaline in times of stress and illness. However, we are blessed that he survived this induction treatment and has come out the other end cancer-free. Kids we know and have come to love are relapsing with Neuroblastoma at an alarming rate. There is no known cure for relapsed Neuroblastoma.

At times of crisis and stress we look to our Federal Government and our elected officials to make law out of sound judgment. I know you have a tough job divvying up the pie. But, this is United States of America. This is the Year 2007. President Nixon declared war on Cancer in the 1960’s and research brought us a long way. But we can’t stop there. We can’t treat our millennium babies with protocols from the 1960s. The Federal Government needs to step up to the plate and put our kids first. The pharmaceutical companies aren’t funding the research because they don’t see enough profit in Childhood Cancers. That is unacceptable. It is unacceptable to leave fundraising at the hands of stressed and grieving parents to do privately. This is when we need to fall back on you. I elected you with our children’s best interests at heart. All kids deserve health insurance, and the Conquer Childhood Cancer Act of 2007 needs backing. You need to figure out how to scrimp and save in other areas. My suggestion: End the War! Stop harming Iraqi children and start saving American children’s lives!

Respectfully,



Lara Cady Weberling
Mom of Hans, Age 4, Stage IV Neuroblastoma

Please Write or Email your Congress person today!

Tonight I'm heartsick as I have learned that another one of our little TCH friends, Ryan "Batman" Williams has relapsed. We just had the good fortune of getting to know his whole family on our Ranch Weekend. Please offer up a prayer for this little guy. He and his family have a long and mysterious road in front of them.
There is no "known cure" or even really great treatment plan for relapsed Neuroblastoma. But there is hope, and there are really smart researchers out there that WE need to put to work. I have an analogy in my heart for Neuroblastoma. Each of these kids has served a Tour of Duty. When they are NED (no evidence of disease) it's like they've made it home. And then, at any moment, at any day in their future, they can relapse or be called back out for another Tour of Duty. They didn't enlist but just got drafted right out of preschool. They are only babies, toddlers and school aged children fighting for their lives. It is heartbreaking and it is also criminal that our country isn't supporting the research efforts that CAN establish effective treatment methods for relapsed NB and can make initial treatment BETTER so our kids don't relapse. Please do something to help RIGHT NOW!
Hey - it's not plagiarism if you cite the source, right? So, I'm cutting and pasting from another NB mom. She's a prof at Texas A&M and she's already done her homework, so please read Below.
Warning: If you've been protecting yourself from some of the uglier statistics surrounding Hans' disease, you may not want to scroll down much further.
from: http://erinbuenger.blogspot.com/
These days, when I hear 1 in 300, all I can think of is the childhood cancer statistic: one in three hundred children in the U.S. will develop cancer before they reach adulthood. That always reminds me of another grim statistic. I read that each and every day of the year--Sunday through Saturday, Spring, Winter, Summer, Fall--a whole classroom of children will hear the cancer diagnosis. Frankly, I always imagined that meant twenty or so children per day. I was horribly wrong. The truly grim reality is based on a classroom size of 35. (If you are thinking you hope your child gets to be in Erin's class since she already has cancer. . .that's not the way statistics work.)
This month, September, is Childhood Cancer Awareness Month around the country and in Brazos County. If you do nothing else all month, you should do something to spread the word and help the cause. Here are some ideas:
visit a pediatric cancer patient's website (here is a good place to go: Kids Cancer Crusade), and leave a word of encouragement;
donate to Alex's Lemonade Stand (supports all pediatric cancer), or better yet, make plans to hold a lemonade stand yourself;
give up your lunch and send what you would have spent to Lunch for Life to (supports neuroblastoma research). Ask your friends and co-workers to do the same;
Support these dads (by going to Loneliest Road) who are riding their bikes coast to coast to raise money and awareness for Neuroblastoma treatment and research;
Write your Senators and Representative and ask them to support the Conquer Childhood Cancer Act of 2007 (S. 911 and H.R. 1553) and to help get it out of committee and onto the floor of the chambers this month (this will authorize $150 million for research over the next five years);
Watch this video (http://www.youtube.com/watch?v=AGS4yE5v9rM) and brain storm ways you can help;
Stop by the CureSearch website and read about even more things you can do to help in the fight against childhood cancer.
Thank you to all who have already helped in this cause. Every bit you do makes a difference. When I was a child, everyone I knew who had cancer died. We didn't even say the "C" word. Today, because of heightened awareness and a better flow of research dollars, many can be saved. Nevertheless, it will take millions to find a true CURE.

SOME FACTS ABOUT PEDIATRIC CANCER:

Childhood cancer is the number one disease killer in children.
Neuroblastoma is the most common cancer in infancy.
Neuroblastoma is the most common extra cranial solid tumor cancer in children.
Every 16 hours a child with neuroblastoma dies.
There is no known cure for relapsed neuroblastoma.
Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body.
When disease has spread at diagnosis and a child is over the age of 2, there is less than a 40% chance of survival.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy,asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer. "
We also need to contact our Senators and Representatives and tell them to get behind the Conquer Childhood Cancer Act 2007! Tell them why. No one wants to see a child suffer from cancer. Americans want their tax revenue to research ways to prevent ugly illnesses to our beautiful kids. This is something we ALL want to spend our money on. Please do this today!
www.house.gov and http://www.senate.gov/
Thanks -

Lara
PS - okay - to leave you on a gloriously happy note, Kev just pointed out the front page of the Houston Chronicle today. A boy by the name of Omar Amin was in the hospital for Luekemia many of the same stays as Hans. His mother and I became friends. He has been back on the Football field this Fall and plans to be back and even more serious next year, as a Senior! Way to go, Omar!

Thursday the 11th

Hi,
I am posting in response to a lovely call of concern from New Mexico. Aunt Susan - we've been just fine! Well, "fine" is I guess relative. Hans has definately had a spurt of good home energy. We've kept him indoors and partially sequestered as he is still nursing this cold. I called and talked to Shari, our NP today, and I was grateful that she called in a prescription for an Antibiotic. We're just a bit nervous to see that his cold sypmotoms aren't clearing up and we're keeping him at his stress dose of steroids. Maybe it's a blessing that our scans are so spread out this month - perhaps we'll all be 'up' for them next week and the week after.
I'm just exhausted! I think it's a little extra worry about Hans, and haggling with our insurance company. It hasn't exactly been a walk in the park! They're covering everything, but with so many claims (355 this year!) there's bound to be errors and we're slowly sorting all of those out...
We just set up Elle's new dresser and rearranged her room to accomodate it. Thanks Grandma Kathy - it looks great and she actually has a bit of room in her drawers. That's all that's going on here. We've got soccer and birthday parties and possibly a festival this weekend. We'll see what Hans is up for.
Lara

Squirrel Creek Ranch Pictures

This weekend

Wow - we had a pretty great time at the Ranch. My gosh, it's pretty amazing what people can do for others. The Faust's are a couple dedicated to doing a lot for families affected by childhood cancer. These guys flew us out to their private ranch and took care of our every need for the whole weekend. There were 6 Neuroblastoma families and 4 TCH staff and then 5 Baylor College of Medicine people as well as Ranch Staff. The kitchen staff made us the yummiest food and were so very accommodating to Hans and his every last whim. He'd come to them with his special requests between mealtimes and they were happy to get him what he needed. We got to enjoy swimming, fishing (the kids caught lots!), horseback riding, a hayride to check out the exotic animals- camel, bison, ostrich, zebra, etc. and more. The food was incredible.

The only catch was our little Hansie started to get bit of a cold and was sort of out of it and lethargic for most of Saturday. Poor guy gets pretty wiped out when his immune system gets hit with a little something. We still have to tease apart if it's more a product of being on Accutane, or a steroid/Adrenal thing, or what???

We hardly saw Elle all weekend she was bonding with the girls out there Carlie and Hayley and Brianna too! Kevin and I had fun getting to know the other families and the staff in such a relaxed atmosphere. I hope lots of other TCH families get an opportunity to experience the Squirrel Creek Ranch, too. If they invite you, don't even think about it - just say "Yes!" The hardest thing for me was that Haleigh and her family were supposed to be out there. Colby's family was supposed to be there, too. We held a little ceremony for her and planted a palm tree next to a bench dedicated for her. Her memorial was this weekend. I heard everyone wore pink!

Shari called us last night to tell us that the MIBG and the Chest CT Hans did on Thursday were both Fine! Hurray! Hallelujah! It is such sweet relief to hear. But we do have more scans to come, so keep the prayers coming. Thanks!

Oct. 4th

Today went well. Hans did awesome in the MIBG scan. This is scan that takes a little over an hour or so. Hans has to be taped down to a flat bed and the imaging machine circles around him. He can watch a video, but his view is obscured during a couple of the pictures they take. Hans was a great sport until about the last 5 minutes and he had just had it. I took him to his favorite cafeteria at the Methodist Hospital after the MIBG scan. Then we went in and got the CT done. He did very well for the CT scan! Yay Hans! Let's pray for normal results. I don't know when we'll hear...



A year ago today was Hans' first trip to TCH. His Pediatric Urologist was based out of the 4th floor of the Clinic Building. Luckily for me though, Hans was delivered in the Medical Center, so I was familiar with finding my way around there. (The only reason he was born there was because we wanted to deliver Hans in a hospital with a midwife, and for that we went to The Women's Specialists at St. Luke's and they were wonderful!)
I remember that a resident saw Hans first. I described his symptoms and behavior and recent excessive fussiness. The resident said, "Well, that's just being three." 'Maybe,' was my response. Maybe not. That's why I'm here, right? Then, Hans saw the Pediatric Urologist. I think he did feel Hans' belly, and, I don't remember Hans' belly looking bloated or distended at that point. He did not draw blood, and I didn't request that he draw blood.

The gist of the appointment was that the records from the Ultrasound had never arrived to the Urologist's office. I remember feeling very frustrated by this. I felt like we had waited a week for the appointment and that everything should have been there since our Dr.'s office had made the appointment. I should have checked up on them, or brought a copy with me. Who knew?

I shared my concern that all our bike riding had led to Hans' problem. After examining Hans (w/o benefit of the testicular ultrasound report) the doctor thought it was a 'torsion of the appendage of the testicle.' He recommended further restrictions to Hans' activities: no bike riding, no soccer, no rough housing and no straddle toys. The doctor reassured me that he would track down his ultrasound findings to confirm their consistency with his exam. He told us to 'take it easy', and that he expected the swelling to go down. He said to come back in about two and a half weeks.

I'll write more about this on Oct. 20th. That was the next visit. In the mean time I never heard back about the ultrasound. And, little did we know it, Hans' tumor would grow...

I'll write more on Sunday or Monday and post some pictures of the trip to the Ranch!

Lara

Wednesday

Hi,
Our trip downtown was pretty uneventful today! We were able to stop and eat lunch with Kevin at his work. Hans got a kick out of that until it was time for us to go and Kevin to stay. But, he took it pretty well. Would you believe we were in and out of TCH in 45 minutes today? That's very fast! Hans had to get a shot today of radioactive medicine for his scan tomorrow. He did okay - he does get upset right at the moment saying "it will hurt, it will hurt" but then he stops crying almost as soon as it is over. They did a good job of getting it done quickly today!

It's actually starting to cool down a little around here. It was 68 when I left the house for my walk this morning! And, I actually got to wear a sweatshirt on the bike ride to school! We are also noticing lots of Monarch butterflies. They are migrating south and some of them happen to go through The Woodlands. So, that's fun!

Our friend Charon Edginton, Carlie's mom, is putting on a fundraiser for Neuroblastoma right here in The Woodlands on Oct. 21st from 4 - 7 pm. There will be food and music and our doctor will even be there to give a brief 15 minute talk on NB research. All funds raised will go right to NB research at TCH. I'm excited - I think this will be the perfect place to be as we mark the one year anniversary of Hans' fateful first trip to the TCH ER, where we first heard the words, "Large Abdominal Tumor," "Cancer." I'll keep the blog posted with more information on ticket price, etc. as I get it. It'd be great to see familiar faces there!
I'll let you know how tomorrow goes and will post more about 10/4/06 tomorrow...
Lara

reflections on a year ago today Oct. 2nd

A year ago today Hans seemed to be doing sort of okay. Our appointment with the Pediatric Urologist was still two days away. Hans still had his small bruise on his testicle. He didn't like me to carry him on my hip, and he didn't like to have his legs flipped very far back when we changed him. He was also getting fussier than usual.
We had Elle's eight-year-old well child visit with our family doctor, the one who had seen Hans the week before and referred him out to the Pediatric Urologist. Hans was there with Elle and I during her check up. I was floored that the doctor failed to ask about Hans or to mention one word about him or our visit just 5 days earlier. I had not yet even spoken directly with him on the phone regarding Hans' ultrasound results. So, he failed to ask about Hans, that is until it came time to ask if I wanted a flu shot for Elle. Then, he turned to me and asked if I wanted a flu shot for Hans. I asked him if it would be counter-indicated with Hans' current condition. He assured me that no, it should be fine. The conspiracy theorist in me figured he just wanted to get another copay out of the visit. I just felt like he had dropped Hans like a hot rock.
Just this Fall, we have decided to switch Pediatricians. I just felt like I couldn't go back in there and look at the doctor with a secure sense of trust. I appreciate that a Pediatric Cancer Diagnosis is difficult to nail down, but I didn't like the sense of - I don't know what is going on here so go and talk to someone else.
More on Oct. 2006 later...

Hansie started up Accutane yesterday. He seems to be doing okay so far. For some reason, Kevin and I didn't sleep well last night, but I think it's just nerves around starting this medicine back up. We have a quiet day today before going down for scans on Wednesday and Thursday and then off to the Ranch on Friday!

Lara

Another way to help...

Okay - so you may recognize our good friends the Smiley's! What's going on here? It looks like they're up to their elbows in ways to help out. They are all in their Run for Hans T-shirts, they were sure all big helpers for that! It's Jim and Carmen, Michael and Ryan. Carmen's holding the piggy bank they ordered from Coins 4 Kids, and Michael and Ryan are holding soda can tabs. You can get a piggy bank at http://www.coins4kids.org/ and the kids have fun saving, then you cash it in and all funds go to Neuroblastoma Research... Hans and Elle have almost filled our little piggy.

OR... you can help Michael Smiley out with his efforts through his Boy Scout Wolf Pack 777. He is saving soda pop tabs to help support the Ronald McDonald House. Jim is the Den Leader and one of the service projects their pack has taken on is helping out the Ronald McDonald House. I can't tell you how important this organization is! It made life feel actually somewhat normal when staying on the 9th floor. Many families are like us - they MOVE IN and stay for 30 day stretches at times. The RM House provides a fully equipped kitchen with coffee and a fridge, iced tea lemonade and lots of snacks. Sometimes volunteers would bring hot cookies at night or homebaked goodies throughout the week. The RM house provides a "family room" on the 9th floor and I do believe certain other floors at TCH. We also have one at the Day Clinic. It really transforms your experience as a patient. I can't really say enough! It's a good organization to team up with in any way you can, individually as a volunteer, or with your scout troops. While we were there one scout troop would come to our family room and provide a sandwich lunch for all the patients and families each month.

You can help Michael Smiley's efforts by just saving your soda pop tab tops and then sending them to Michael. You can get their address by emailing Carmen at stardustsmiles@yahoo.com
He's already saved a bunch. We're giving him our tabs and so is Grandma Kathy! If you drink soda or canned beer, please consider saving them and passing them along. If you'd rather, you can email me at kevinandlara@hotmail.com and I'll connect you with Carmen! Thanks!
It's pretty easy and I think we all find that helping out makes us feel good.

Oh, the RM house has several other functions. They actually have houses for families to stay at a very low rate, this helps for families living hours from the hospital. They actually also have a little mini hotel right there at TCH. These operations are always accepting donations of things like shampoos, mini soap, laundry detergent and dishwashing liquid, as well as paper products like TP, Kleenex, napkins and paper plates. You can check out more ways to help at: http://www.rmhc.org/rmhc/index.html. I'm actually not the hugest McDonald's fast food fan, but I have been thoroughly impressed with the RM House. It has a truly special function that many of us would have been lost with out.

Thanks!
Lara