Radiation Still Going Well...

Just to let you know...Radiation is still going great. Hans is not exhibiting any side effects yet! It's very fast and efficeint.
After radiation today we had a sweet little playdate in the park with Hans' old preschool class, The Monkey's. Thanks to Colton and Alyssa for coming out to play. I know some of the other kids wanted to join us but runny noses or other maladies kept them away. It's really best to play it safe right now and keep Hans as healthy as possible. Thanks to Jill T. for setting up the playdate, I only wish you could have joined us. Next time for sure!
Lara

Day Two of Radiation

Hans again did great for radiation. The upside of his early morning appointment was that we were able to hit the zoo right afterwards (the Houston Zoo is very close to TCH and the Medical Center). We were actually the first in line and Hans was jumping up and down as the gates opened. He was pretty cute, announcing to each animal "we're back, elephants" "I came back to see you, giraffes." Then he says things to me like, "That was a good time looking at the giraffes, mom." He's pretty sweet. And as for radiation, so far, so good!

Radiation Underway...

Hans did a great job at his first day of Radiation today! I had him out the door by 6 am and he didn't even complain about not being able to eat. I think he "gets it". He knows now that I'll have food ready for him as soon as it's okay for him to eat. We beat most traffic and got there early. We were in and out by 7:50 am! Hans didn't experience any side effects and was able to enjoy a PB&J and a Red Berry Capri Sun right in the recovery room. The nurse there is very sweet and she was even supportive of me wanting to trim his fingernails when he was still out cold. Tomorrow I'll conquer his toenails.

We were able to check in for counts bright and early. We found out the good news that his counts are all up. We were free to go by 10 am! Whoo hoo!

My Babushka at Girl Scouts Thinking Day

Elle's Girl Scout troop researched the Ukraine for Thinking Day, today, Feb. 24th. One of our troop members is from the Ukraine. Elle is wearing the country colors of yellow and blue, traditional braids and a Babushka. Isn't she sweet? She had a busy day today with her Science Fair presentation, a basketball game and picking up her Girl Scout cookie order. We'll get your cookies to you soon! Her brother was happy to stay at home throughout this busy day.

We tried to post her presentation, but it is difficult to post powerpoint presentations on the blog. If you would like to see it, just email me at kevinandlara@sbcglobal.net and I'll email you the file! Kevin and Elle said it was a big success. The Glen Loch teachers and principal made an especially good audience.

Me, Hans and Roxie at the Clinic

We had a good time with Roxie, Hans'
Godmother, who flew out for a visit from Santa Cruz, CA. She focused on taking care of our (three) cats that I have been somewhat neglecting. They all now have break-away collars and nametags. She also insisted I take myself shopping, so we did have a productive trip to the mall. She and Elle got to go see Night at the Museum, and then we went to see the Frogs exhibit at the Houston Museum of Natural Science. We even managed to squeeze in a girl's nite out with Carmen, Marlene and Dana. It was fun. She appreciated going to the clinic and getting a taste of Hans' care here at TCH.

Quinn and Ashley's Visit

This is a picture from back in December when Kevin's brother Quinn and his girlfriend Ashley came down to visit.

(I tried to publish it earlier, but I actually had some technical difficulties, sorry!)

Grandma Stephanie and Elle on Bikes

This is one of the cruisers we got for visitors. We're having fun on them too!

MIBG and Bone Scan NORMAL!

We got the good news yesterday that Hans' Bone Scan and MIBG are normal. Yesterday Hans was a really good sport for the CT Scan (and for getting red blood cells as well)!

We're about half way there with the scans. We still have to do the echocardiogram, give the audiogram another shot, and complete the Bone Marrow Aspiration. We had a dental appointment on Thursday and found out that Hans does need a couple of fillings before going through the Bone Marrow Transplant. The good thing is that they are able to do the Bone Marrow Aspiration while Hans is sedated for his Oral Surgery.

Hans' Radiation starts on Monday. We have an early appointment, 7:15 am, so we'll be sure to beat much of the traffic. The plan is to go in for counts twice next week, then we may be able to cut it down to once a week.

Kevin and Elle have been working on an "All About Pediatric Cancer" Poster Presentaion for Conroe ISD's Science Fair today at Montgomery College. If you're going to be there, look for Elle's poster at 3 pm in the Glen Loch Elementary area.

Have a good weekend. We're thrilled to be staying home for two days!

Lara

"Scan-o-Rama"

So we are in the middle of "Scan-o-Rama", as one mom puts it. So far Hans is doing pretty well holding up through all of this. Today he had to be NPO (no food or drink past midnight) until our 9 am appointment. In Houston traffic we shoot for leaving the house by 730 am to get to a 9 am appointment. The poor baby, even though we explained it to him over and over again, he was looking at us like "why aren't you guys feeding me???" Tomorrow is the only weekday he's not NPO for three weeks! I think he'll get a little more used to it.

On a positive note, we'll be doing radiation at Methodist Hospital. So far I'm really impressed with the way they run their clinic. Pediatric patients have a.m. priority and everything seems to run in a timely fashion! Things went well in general today. After Hans got his markings for radiation at Methodist, we went to the clnic and received needed platelets in perfect time for us to make it to his 1:30 pm appointment with Nuclear Medicine -an injection for tomorrow's MIBG scan.

Yesterday Hans completed his Bone Scan and he will undergo another CT scan Friday. We haven't had the Bone Scan results read yet, but I'll post them when we get them. Please continue to keep our beautiful little guy in your prayers!

Thank you,
Lara

Large number of cases of Neuroblastoma in The Woodlands

I haven't put it up on the blog yet, but there have been a large number of cases of Neuroblastoma right here in The Woodlands. Hans was the third case since Spring '04, and since his diagnosis another child has been diagnosed. An Epidemiological Investigation is underway through the Texas Department of Health. I thought I'd post an email I just sent to my congressperson, Kevin Brady, just last week. For anyone who'd also like to send him an email of concern, his email address is: rep.brady@mail.house.gov. My email is below:


Honorable Congressman Brady:

I am writing as a constituent, a mother, and a concerned citizen. My son Hans Weberling, picture attached, a wonderful and adorable 3 ½ year old boy, was diagnosed with Neuroblastoma, a pediatric cancer, in October 2006. This is a cancer that strikes children in industrialized nations at the rate of almost 1 in 100, 000 children, or 650 – 1000 US cases per year. My concern and alarm has been amplified as Hans is far from alone in receiving this diagnosis in The Woodlands. Over the past 18 months, 3 other children have received this diagnosis here in The Woodlands. More cases have been diagnosed in greater Montgomery County.

Your office would know the exact demographics here in The Woodlands. How many children under the age of 5 live here? 5,000 – 10,000? This leaves me and many other parents wondering – why is that here in our safe and comfortable community are we so shockingly overrepresented for this life-threatening illness?

I don’t know if your office has been made aware of this situation. All four of these children are being seen by Dr. Heidi Russell at Texas Children’s Hospital in Houston. She has passed case information on to the Texas Department of Health for further Epidemiological Investigation. I have yet to be contacted by TDH for any questioning or analysis.

Do you have any staff available to provide me with historical information regarding land usage in The Woodlands? Has this area ever held a land fill or perhaps a toxic waste site? We are a small and connected community. People are starting to get alarmed. Is there anything that you can do for us in terms of providing answers as to why this might be happening to our children? More importantly – if there is an environmental cause of these illnesses it is critical that it be identified and rectified.

I am praying for each of these children daily, I am also praying that we don’t see many more children coming forward with similar symptoms.

Please do everything your power to encourage the increase of federal funds for medical research.

Please do anything in your power to provide me with answers regarding my child’s illness.

Your Constituent,


Lara Cady Weberling
Mother, Preschool Teacher, Girl Scout Leader, PTO Member, and Soccer Mom

Thursday's trip to the clinic

Hi,
Thursday's clinic visit went great! Hans' platelet and red blood cell count were both up high enough for him not to need a transfusion. Kevin and I were able to attend the parent meeting while Roxie and Hans hung out in the waiting area. Since we didn't need a transfusion we were home by 2:30 PM this time:)

We also met with the Radiologists at Methodist Hospital about Hans' radiation treatment. We learned that Hans will receive 12 radiation treatments starting 2 weeks from now. The treatments will only last about 5 minutes, but he'll have to hold very still so they will sedate him. This will mean early morning commutes through heavy traffic with a hungry boy, but at least the treatments are quick.

We're having fun with Roxie. Hans is still dancing "The Bear" and is eating around the clock, trying to catch up.

More later. Have a fun three day weekend.

Lara

Happy Valentine's Day!

We had a LONG day at the clinic yesterday! We arrived for the GFR at 9 am. That went smoothly! Yeah, Hans! Thanks for being a good sport! The results came back today as "normal". Yeah!

After the GFR we could go up to the clinic for counts. We found out that Hans' blood counts were really low again. Unfortunately, it was already 3pm by the time we found out that he needed both red blood cells and platelets. The clinic doesn't start blood transfusions after 2:30, I found out.

So - we had time to go down to the 5th floor for Hans' audiogram before they figured out where to send him to get blood. Hans was pretty much an audiogram drop-out. He refused to really participate in any of the tests - and I was starting to worry about his getting upset, because with his low platelets he can get pretty bad nose bleeds if he gets really worked up. Anyway - the audiologist cancelled the testing and rescheduled our appointment for March 1st. I am hoping he'll be a bit more cooperative at a 9am appointment. Kevin and I aren't too worried about his hearing. We give him unofficial whisper tests all the time and he catches every word.

Then, we went back up to the clinic, to wait and wait and wait for a room or a place to receive blood. They finally sent us to a place called Short Stay and they got his blood going by 8pm. We were on our way home at 1am this morning. It was a long haul yesterday, but it was good to wake up here this morning.

Thankfully, Kevin was at home with Elle in the afternoon - and they received a lovely hot meal from someone from St. Anthony's. The St. Anne's society has done an amazing service for us. They have set up 5 months of meals delivered to our house on M, W, F! It has been awesome! We so appreciate it! The meals have been nutritious and delicious. It has been very helpful in saving time with meal planning and preparation. You never really plan on staying at the clinic until 1am! Thank you to everyone who has lent a hand, or cooked a meal, or stepped up to help us out one way or another. It has been amazing.

The good news is that Hans is sort of enjoying being a homebody this month. He is just eating a lot, staying home, doing art projects and watching his shows. He doesn't even push us to go outside these days. It's like he knows what he needs right now, and with his white counts so low - it's best for him to just lay low and recover.

We actually go back in for counts on Thursday - but we don't have any more scans or test until next week. Hans' godmother, Roxie, comes in tomorrow from California for a visit and to help out. We'll have fun with her and she'll get to check out the clinic on Thursday.

Happy Valentine's Day
Lara

Yesterday's trip to the clinic...

After four and a half straight days "off" at home, we went to the clinic yesterday for counts and a check-up. As we had sort of expected, Hans did need both platelets and red blood cells. His white count was also quite low, so we'll have to shy away from visitors for the next several days until it starts to come back up. We also received his scan schedule for the next month. Hans is going to have a bone scan, another CT, another MIBG -or full body scan- and a bone marrow aspiration this month to look for any remaining tumor cells. We are pretty optimistic about these scans since originally, aside from the large abdominal tumor and the bone marrow, they didn't find much beside some questionable spots in the liver. Dr. Nuchtern felt pretty good about the liver after closely inspecting it during the surgery. I am hoping that the bone marrow sample will now be free of tumor, but our Dr. has assured us that treatment will remain the same even if clumps of tumor are still present there.
He will also have an audoigram, an echocardiogram, a GFR (kidney function test), and a dental exam. For the most part these will compare to his baseline to see if any damage has been done by the chemo he has already received. The GFR will I guess help determine how much more chemo his kidneys can take. We are going to be taking many trips down to the medical center this month. Thankfully, friends seem happy to help out by watching Elle after school. Thanks! I'll keep the blog up to date as these results start coming in.
Lara

Friends Forever, Hans and Ryan

These are cute pictures of Hans and Ryan from today after their park playdate. It was a beautiful day to be outside at the little park by the Weberling's house. Lara and I walked and Hans (on big wheel) and Ryan (on scooter) were proudly on their 'wheels'. We had many requests by both boys to do 'Underdog' while pushing them on the swings. In reference to the bottom photo - we had to put the 'stuffed animal' version of Kramer in between them.

-Carmen

Megan and Hans

This is Megan, who got a cold while here and had to wear a mask around Hans. Hans is blowing his party blower/respiratory toy. Thanks to Shirley Zeosky who made a trip to the party store for us when Hans didn't want to blow into the official Hospital toy to build up his lungs.

Carmen and Elle

Carmen and Elle were cracking up together watching How to Eat Fried Worms, as we passed the hours of surgery. It was really nice to have a room to pass the time, so we weren't stuck in the crowed surgery waiting area.

Hans waiting for the car outside of the hospital

After 19 days in the hospital, Kevin snaps this picture of Hans as they wait outside TCH for me to pull the car around, pick them up and take them home!

Happy at home...

Hi everyone! It's Monday morning now, and Hans has been home since Saturday afternoon. He has had a good time being home. As we expected, he is eating and moving around a lot more at home. Kevin did chicken wings for SuperBowl and that's been Hans' current favorite. I think it falls in line with the High Fat/High Protein diet the dietician recommended. He has already taken a trip to the park and we'll be able to go again today. The only "catch" has been that he came home on IV antibiotics - so we've been giving them to him 4 times a day. He doesn't like being hooked back up to an IV at home, but it goes pretty quickly and we're done with them tomorrow.
We should be able to be home for the month of February -we'll just have to go in to the clinic a bunch for blood counts and scans.

Chemo is Complete

Hi everyone,
Sorry we haven't posted any news in a couple of days. The good news is that they were able to identify the type of infection right away and the antibiotics worked very very quickly. Hans just had to wait until his blood cultures were infection free for 72 hours before starting chemo. He was able to start his chemo on Wednesday. It's a three day chemo cylce, so they just keep us for 24 hours of hydration afterwards, and then he gets a shot of newlasta to promote blood cell growth and we're on our way home tomorrow! It will have been something like 19 days already! We never aniticipated this stay to be quite so long. What we've learned, though, is that Hans is really the comeback kid. He beat pneumonia and the line infection like a true champ. We're all looking forward to spending our first weekend out of the ICU!!! Hans is always happy to go home to his kitties (we have three! Cotton, Orange and Black), and Kevin's happy to be home for Superbowl Sunday. Hans is eating pretty well - so Kevin's gonna try to fatten him up with some game food.
Thanks to everyone for their prayers, notes, cards, calls and thoughts!
With Love, Lara