Hi again,
Well - I had hoped to post some pictures but I have been a little out of it - I had a positive flu test on Saturday. It really knocked me out the whole weekend, but I'm finally feeling better. The doctors went ahead and put all 4 of us on Tamiflu. Elle was already on antibiotics for strep, which may actually have been flu, and with Hans on Accutane - we're running a little pharmacy here.
Hans is actually doing well so far. It's Day 9 and his rash is looking better. I guess the key really is keeping him indoors. He is peeling a lot, but we are trying to keep him coated in Aquaphor.
I feel like I owe you some pictures, so I'll try to get some up by the weekend. I need to take some basketball pics, this weekend's game will be the last.
We managed to get through last weekend. Elle made it to both games and completed her science fair project. She did a survey of Woodlands recycling habits - she came up with the figure 68% of us recycle. Then she had a test as to what was recyclable curbside and what had to be dropped off. She didn't get a lot of traffic at her booth, so she's taking the project in to school today. Kevin said she did really well on her own explaining her project to passersby.
That's about it - Hans is going to go pick out a NEW hot wheels track today - that's his thing.
Lara
About Me
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.
Tuesday, February 26, 2008
Friday, February 22, 2008
Round 4, Day 6
So - It's been a week since I posted! Sorry!
Not much to report other than we are cruising along thru Accutane, Hans had a bad skin rash the first several days on Accutane. His cheeks and chin were very red and he did say it is itchy.
We are sort of counting down. He is supposed to finish out rounds 4, 5, and 6. It's 14 days on and 14 days off. And, he is only getting the 50% dose of the stuff...
Elle has been keeping us pretty busy this month. Soccer and Basketball overlap for the full month of February. We are trying to get all the cookie orders filled, as well as work on her Recylcing Prjoect for the District Science Fair! Whew... We also have to pick a date to deliver the cases of cookies down to the hospital.
We found out our friend Roxie will be coming out for a surprise visit. She'll actually be here doing some campaigning for the primary on March 4th! She's coming out with a contingent of women from California campaigning for HRC. I think it's very exciting to have a woman as a contender this year! Then, she'll come and stay with us through the 8th...
So - that's what's going on around here. Just hoping Hans continues along with the Accutane uneventfully!
Lara
Not much to report other than we are cruising along thru Accutane, Hans had a bad skin rash the first several days on Accutane. His cheeks and chin were very red and he did say it is itchy.
We are sort of counting down. He is supposed to finish out rounds 4, 5, and 6. It's 14 days on and 14 days off. And, he is only getting the 50% dose of the stuff...
Elle has been keeping us pretty busy this month. Soccer and Basketball overlap for the full month of February. We are trying to get all the cookie orders filled, as well as work on her Recylcing Prjoect for the District Science Fair! Whew... We also have to pick a date to deliver the cases of cookies down to the hospital.
We found out our friend Roxie will be coming out for a surprise visit. She'll actually be here doing some campaigning for the primary on March 4th! She's coming out with a contingent of women from California campaigning for HRC. I think it's very exciting to have a woman as a contender this year! Then, she'll come and stay with us through the 8th...
So - that's what's going on around here. Just hoping Hans continues along with the Accutane uneventfully!
Lara
Friday, February 15, 2008
Answered Prayers
Hi All,
I think my eyes are going to fill with tears as I type this, but after a rough couple of days and some question marks yesterday at our office visit, we finally got the news "all clear" on the scans. Yesterday we hadn't gotten the full story - there was a (large) area that was lighting up on the MIBG that shouldn't have. The radiologist looked at it today and we got news about 12:30 that all is good/clear. The area must have just been bowel... By the way, his GFR (kidney test) came out better, in the normal range, and the Echo was normal as well.
So, Hans will start back up on Accutane tomorrow. I'll probably keep him somewhat of a homebody during this time, as it can be so harsh on him. We hope to have him finish out the three remaining months, incident-free.
I have to tell you that the Bake Sale was truly outstanding. We raised over $1,700 for Neuroblastoma Research! Can you believe that? Have you ever heard of such a thing? So, now we're scheming up a couple of other great bake sale ideas and I'm sure the many talented and generous bakers we know will try to out-do themselves for the next one.
Thank you for all your baking, buying, hard work and support. But, most importantly, thanks for any prayers you've said for Hans, and for Carlie and for all the other kiddos we love.
Lara
I think my eyes are going to fill with tears as I type this, but after a rough couple of days and some question marks yesterday at our office visit, we finally got the news "all clear" on the scans. Yesterday we hadn't gotten the full story - there was a (large) area that was lighting up on the MIBG that shouldn't have. The radiologist looked at it today and we got news about 12:30 that all is good/clear. The area must have just been bowel... By the way, his GFR (kidney test) came out better, in the normal range, and the Echo was normal as well.
So, Hans will start back up on Accutane tomorrow. I'll probably keep him somewhat of a homebody during this time, as it can be so harsh on him. We hope to have him finish out the three remaining months, incident-free.
I have to tell you that the Bake Sale was truly outstanding. We raised over $1,700 for Neuroblastoma Research! Can you believe that? Have you ever heard of such a thing? So, now we're scheming up a couple of other great bake sale ideas and I'm sure the many talented and generous bakers we know will try to out-do themselves for the next one.
Thank you for all your baking, buying, hard work and support. But, most importantly, thanks for any prayers you've said for Hans, and for Carlie and for all the other kiddos we love.
Lara
Monday, February 11, 2008
TCH Bake Sale Wednesday!
If you're anywhere near the Med Center on Wednesday, please try to make it out to the Bake Sale of the Century! For a while there I thought we had 30 bakers, but as word spreads like wildfire and everyone's mom, neighbor, and bridge group buddy wants to offer up their best, we are about to have the sale of the century!
Four TCH moms (me, Amy, Tracy, and Athena), one grandma and Carmen will be there along with Hans, Roman and Colby to sell. I think we're gonna do really well. All proceeds will be divvyed up among the TCH kids with LFL campaigns and they'll go back to NB research at TCH. I'm baking heart shaped brownies, heart shaped red velvet cupcakes, and a ton of sugar cookies.
I have to thank all of the other TCH moms, like Karen, and their neighbors, and their moms, Carmen, and Monte, Michelle, Lisa, Alana, Kuovonne, Vicki, Dana, Marlene, Ginger, Anne, Sheri, Shirley and everyone who is helping with the sale! And thanks to Kev, he has been my tech guy helping with the flyer and getting my poster all set. Thanks also to Elle and Hans' friends - Ryan, Michael, Morgan and Adrian. They all got together afterschool today and helped us make a gorgeous banner for the sale! Carmen has stepped up and she's just been "co-president" of the bake sale since day 1 - thanks! Thanks, also to Donna Arnett, who will be taking care of Elle all day Wednesday while we get through the echo and wrap up the sale!
We're also turning the sale into a letter writing campaign. We hope to send off hundreds of letters to Senator Kay Bailey Hutchison, encouraging her to "sign on" to the Conquer Childhood Cancer Act!
I guess it's not a bad way to spend the hours that we'd normally be up there waiting out the time b/w Hans' MIBG injection and Echocardiogram.
Wish us luck!
Lara
Four TCH moms (me, Amy, Tracy, and Athena), one grandma and Carmen will be there along with Hans, Roman and Colby to sell. I think we're gonna do really well. All proceeds will be divvyed up among the TCH kids with LFL campaigns and they'll go back to NB research at TCH. I'm baking heart shaped brownies, heart shaped red velvet cupcakes, and a ton of sugar cookies.
10 - 3pm on the 3rd floor bridge of TCH Wednesday, Feb 13th!
I have to thank all of the other TCH moms, like Karen, and their neighbors, and their moms, Carmen, and Monte, Michelle, Lisa, Alana, Kuovonne, Vicki, Dana, Marlene, Ginger, Anne, Sheri, Shirley and everyone who is helping with the sale! And thanks to Kev, he has been my tech guy helping with the flyer and getting my poster all set. Thanks also to Elle and Hans' friends - Ryan, Michael, Morgan and Adrian. They all got together afterschool today and helped us make a gorgeous banner for the sale! Carmen has stepped up and she's just been "co-president" of the bake sale since day 1 - thanks! Thanks, also to Donna Arnett, who will be taking care of Elle all day Wednesday while we get through the echo and wrap up the sale!
We're also turning the sale into a letter writing campaign. We hope to send off hundreds of letters to Senator Kay Bailey Hutchison, encouraging her to "sign on" to the Conquer Childhood Cancer Act!
I guess it's not a bad way to spend the hours that we'd normally be up there waiting out the time b/w Hans' MIBG injection and Echocardiogram.
Wish us luck!
Lara
Friday, February 08, 2008
Scans...
Hi,
Well, we have no results yet, of course. But, Hans completed his CT and Bone Scan yesterday. We also went in Monday for the GFR (kidney test). Hans did very well on our long day yesterday. The Bone Scan process went well, and the CT was a little rough - getting him to drink the contrast and sitting in this terrible room from 7 am til they finally got us 10:30am, but he did alright. The little hospital miracle yesterday was that the people down in the basement in Nuclear Medicine were able to bump his Bone Scan up two hours! This was great - as it alleviated two hours of down time. We were able to go right down for his injection after the CT. That way he could remove the IV immediately and not wait around with it. We went to lunch and came back for the Bone Scan at 1pm and were done by 2pm, and home in time to meet Elle off the bus. Our next scan is the MIBG (full body scan) and the Echo on Weds/Thurs next week. We may not hear back on the results until next Thursday!
Of course we are on needles and pins awaiting the results. But, all we keep saying is that Hans really has been doing well. The other day he actually RAN all the way home from the little park down the street. I don't think I've ever seen him move quite like that. He's also still working on his dance moves. He calls the boom box we got him for his b-day his "dancer" and he had me bring it down to the living room yesterday for dance time! I was amazed at his energy level after our long day at TCH!
The service for Carlie happened on Tuesday. It was lovely and painful. It really hits you how many lives are touched by each and every child. It just kills me that we're still so far from understanding why Neuroblastoma happens to our kids, and how to treat it better. If you'd like, you can go online to www.lunchforlife.org and give up a lunch in Carlie' Edgington's honor. It has been truly impressive how many have gone online to give over the course of this past week.
Lara
Well, we have no results yet, of course. But, Hans completed his CT and Bone Scan yesterday. We also went in Monday for the GFR (kidney test). Hans did very well on our long day yesterday. The Bone Scan process went well, and the CT was a little rough - getting him to drink the contrast and sitting in this terrible room from 7 am til they finally got us 10:30am, but he did alright. The little hospital miracle yesterday was that the people down in the basement in Nuclear Medicine were able to bump his Bone Scan up two hours! This was great - as it alleviated two hours of down time. We were able to go right down for his injection after the CT. That way he could remove the IV immediately and not wait around with it. We went to lunch and came back for the Bone Scan at 1pm and were done by 2pm, and home in time to meet Elle off the bus. Our next scan is the MIBG (full body scan) and the Echo on Weds/Thurs next week. We may not hear back on the results until next Thursday!
Of course we are on needles and pins awaiting the results. But, all we keep saying is that Hans really has been doing well. The other day he actually RAN all the way home from the little park down the street. I don't think I've ever seen him move quite like that. He's also still working on his dance moves. He calls the boom box we got him for his b-day his "dancer" and he had me bring it down to the living room yesterday for dance time! I was amazed at his energy level after our long day at TCH!
The service for Carlie happened on Tuesday. It was lovely and painful. It really hits you how many lives are touched by each and every child. It just kills me that we're still so far from understanding why Neuroblastoma happens to our kids, and how to treat it better. If you'd like, you can go online to www.lunchforlife.org and give up a lunch in Carlie' Edgington's honor. It has been truly impressive how many have gone online to give over the course of this past week.
Lara
Sunday, February 03, 2008
In Memory
Our TCH/Neuroblastoma Community has suffered a terrible loss this weekend. Little Carlie passed away early Saturday Morning at Texas Children's Hospital. Her family has been an incredible inspiration and support to us this past now 15 months. They have handled Carlie's battle with grace and love. Our hearts are breaking for them and we still cannot fully comprehend their loss. I wanted all of you to know, as you, too, have been following Carlie's story along with Hans'. Thank you for extending her and her family your thoughts and prayers.Carlie is pictured above, in the white tank top and her big brother, Anthony is standing right behind her. This photo was taken on our ranch trip last October.Love, Lara and Kevin
Friday, February 01, 2008
Amazing You Tube Video to Watch, Please
Okay - so grab the Kleenex! Our Lunch for Life contact, Mark Dungan, has put together a brief 3 minute video. Hans is featured in this video and so are a couple of other kiddos who have had all or part of their treatment at TCH. Look for Sydney Dungan, Erin Beunger and Alex Podezswa. Just click this link and watch. I plan to send it out again when I do Hans' next big Lunch for Life email campaign (this October). Thanks.
Lara
http://www.youtube.com/watch?v=9Wwi87drDKk
Lara
http://www.youtube.com/watch?v=9Wwi87drDKk
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