I wanted to extend my thanks to each of you who helped us raise app. $5,000 in Hans' honor for Lunch for Life. Here is a message I recieved from the Children's Neuroblastoma Cancer Foundation. Hans is on a NANT clinical trial at CHOP. Looks like we just might have helped fund it, thank you!
"On behalf of all of the families of Lunch for Life I want to extend an enormous thank you for your support of Lunch for Life over the last year. Your “lunches” have counted and this year we will be able to fund more incredible life saving research. Thanks to your support we hope to renew our financial commitment to the New Approaches to Neuroblastoma Therapy (NANT) Consortium. In the past, Lunch for Life funds have been used to help fund promising research and the costs of putting new patients on trial. In fact, last year, half of the patients that participated in the 7 different clinical trials offered through the NANT were only able to receive these potentially lifesaving therapies because of our lunches. In addition, we will also continue to fund research all over the country through the Children’s Neuroblastoma Cancer Foundation’s (CNCF) Junior Investigator Program. Some of the most notable 2 year research projects will be continuing at Sloan Kettering in New York, Texas Children’s Cancer Center in Houston, Ohio State University and Children’s Hospital of Philadelphia. Although corporate giving has had a significant decline in the last few months we hope that we are able to continue our fundraising success so that we can add even more to our research portfolio. It is support from people like you that make this possible. Thank you."
As for our Hansie-bear - He had counts and a check up today. Kevin took him (I got out of clinic duty to get myself to the dentist for a checkup. Fun, huh? But, I have managed to slack on a lot of our other family appts, so I am trying to play catch up.) Maybe I'll even get a hair cut tomorrow? Hans' platelets are climbing up to 61, his HGB is hovering at about 11 and his ANC is fluctuating now a little under 2000... We think he is doing okay. Potassium is also fluctuating so we are playing with his supplement... We're going to try to take him bowling with friends tomorrow.
Thanks for checking up on us...
Love, 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, December 30, 2008
Saturday, December 27, 2008
May the Force be with You
Clearly, the force is with Hans (looking a little like a young Yoda these days with his new 'do) - as you can see in this 30 second video clip with one of his favorite christmas gifts- his first ever light saber. And, despite the fact that he is losing his pants like an Abercrombie Model, he has fully gained back the 2lbs. he lost up in Philly. You can see Elle in the background putting stickers on her guitar hero guitar. We have all been having fun with that!
Dare I say we have turned a corner?? I think it could be true! Hans' ANC was up at a glorious 2,000. His Hemoglobin is Hans' normal high of 12.6, and his Platelets are recovering at 51! I was sooo pleased to cancel our slot for a platelet transfusion yesterday and go home:)
My mom left last night - and at this point I HOPE she made it home safely, despite all the continually falling snow up in Seattle. I don't want to call yet to make sure, I hope she is sleeping in.
We have each fought off a little cold now, so hopefully that's behind us and we can have some fun and get this place back in shape with the rest of our break. Kevin gets to enjoy some time off now, too. I asked the kids what they wanted to do with their break - Elle asked to go to Build a Bear, and Hans wants to go bowlng and 'Pooling' - (play pool).
That's the update for now. All of the families going through the holidays without their precious little ones are certainly in our thoughts and prayers at this time.
xoxo
Wednesday, December 24, 2008
Merry Christmas!
Merry Christmas to all our family, friends, NB family, and friends we haven't even yet met!
Thanks, Kim and Blair, for putting this card together for me - you are too awesome!
I wanted to let you know that we have made it back. Us girls had a fun little carefree, but quite chilly trip to the shores! We enjoyed some fine Gulf Coast Dining, we hiked in the dunes of Mustang Island State Park and checked out the adorable town of Port Aransas - we stayed in a nice little room in Corpus Christi. We hit the Texas State Aquarium and we did see dolphins and sea turtles, and otters. I have a thing for turtles and otters. I always say that one of my favorite things about Texas is the turtles.
Hans and Kevin did just fine without us. And I got a VERY excellent hug from Hans upon return. Hans' counts are so-so. Thankfully, his potassium is stabilizing, his HGB looks good, but his ANC won't really climb back up, and his platelets are hovering rather low at 40-something. We are actually still keeping him away from large (germy) crowds:( We can't wait to be just a little more normal. We have another visit on Friday and my mom has a flight back home to Seattle Friday, too!
That's the update.
Have yourself a merry little christmas!
Sunday, December 21, 2008
more stable, less hair!
Hey there -
Another quick post to give you an update. It looks like Hans' Potassium levels are stablizing, he is still getting lots of supplements, but at least he is able to hang onto enough with the right supplements! His HGB looks okay - but his ANC is still kinda tanking, so we're not having him out and about. We'll see how he looks Tuesday, when Kevin takes him into clinic!
He needed to go back to TCH yesterday on a Saturday for Platelets and a shot of GSFC. That took a while and he did not want to go. Can't say I blame him, we had to go down to the med center on Thurs for a prescription refill and then Friday for counts. So our little dude is today enjoying only his third full day at home since Nov. 22nd. Stinky, huh? But he is doing better.
And, actually, since my mom has decided to hang out thru Christmas, us three girls have decided to go on a little beach adventure. Since Galvenston was so wrecked by Ike, we are going to check out Corpus Christi, leaving the boys here to their own resources, and we'll be back on the 23rd.
BeMerry!
Love, The Weberling
PS - I am usually pretty good with Christmas cards, but this year, I am hoping to do a New Years card - we'll see if that happens!
Another quick post to give you an update. It looks like Hans' Potassium levels are stablizing, he is still getting lots of supplements, but at least he is able to hang onto enough with the right supplements! His HGB looks okay - but his ANC is still kinda tanking, so we're not having him out and about. We'll see how he looks Tuesday, when Kevin takes him into clinic!
He needed to go back to TCH yesterday on a Saturday for Platelets and a shot of GSFC. That took a while and he did not want to go. Can't say I blame him, we had to go down to the med center on Thurs for a prescription refill and then Friday for counts. So our little dude is today enjoying only his third full day at home since Nov. 22nd. Stinky, huh? But he is doing better.
And, actually, since my mom has decided to hang out thru Christmas, us three girls have decided to go on a little beach adventure. Since Galvenston was so wrecked by Ike, we are going to check out Corpus Christi, leaving the boys here to their own resources, and we'll be back on the 23rd.
BeMerry!
Love, The Weberling
PS - I am usually pretty good with Christmas cards, but this year, I am hoping to do a New Years card - we'll see if that happens!
Wednesday, December 17, 2008
Days at home!
Hans is spending the morning charging and playing with his rc helicopter. I am running around trying to keep toys in batteries. I am going to add rechargeable batteries to everyone's Christmas list!
We are GLAD to have two days at home before we make a return trip to the clinic for counts and a meeting with Dr. Russell. Hans Counts are good enough to allow him to st home two days!
I want to thank everyone for their generous giving on Hans' Giving Tree! I just checked it out he is up to 927 ornaments! I think that's wonderful. He still has a few more days until Christmas Push is over. Thanks so much. That's almost $5,000 in cash donated just because we asked! Thanks everyone. Check it out -www.lunchforlife.org
I made a $1,200 contribution to research from the lanyard project this week. How cool is that? Thanks for your orders! I'm going to keep at it - so you can still let me know if you'd like one - or if you'd like to take a group order for your office (still perfecting my order form, sorry!) lanyardproject@live.com
When we couple that with the $3,000 bake sale, and a couple of successful yard sales (what were the totals on those - $4,500???) it looks like we're getting pretty good at this fundraiser thing. I want to thank Donna Ludwinski - who is going to get one of our Texas-Sized bake sales going up at the University of Minnesota for Valentines Day - right along with us! It'd be awesome to get a few more of these going! email me at kevinandlara@hotmail.com for my bake sale tip sheets to start one up at your children's hospital, or anywhere - we're focusing on Feb 13, 2009!
All those funds go toward clinical trials, just like the one Hans was just on. All we know for sure is what we are doing now isn't working for everyone. We need to get better, and the only way to do that is to keep asking the questions. I BELIEVE we can get better, and I am committed to doing what I can to help fund the answers. And what is so cool is that all of the parents up at TCH work together so well with the same goal.
Better run - have a good week.
Lara
We are GLAD to have two days at home before we make a return trip to the clinic for counts and a meeting with Dr. Russell. Hans Counts are good enough to allow him to st home two days!
I want to thank everyone for their generous giving on Hans' Giving Tree! I just checked it out he is up to 927 ornaments! I think that's wonderful. He still has a few more days until Christmas Push is over. Thanks so much. That's almost $5,000 in cash donated just because we asked! Thanks everyone. Check it out -www.lunchforlife.org
I made a $1,200 contribution to research from the lanyard project this week. How cool is that? Thanks for your orders! I'm going to keep at it - so you can still let me know if you'd like one - or if you'd like to take a group order for your office (still perfecting my order form, sorry!) lanyardproject@live.com
When we couple that with the $3,000 bake sale, and a couple of successful yard sales (what were the totals on those - $4,500???) it looks like we're getting pretty good at this fundraiser thing. I want to thank Donna Ludwinski - who is going to get one of our Texas-Sized bake sales going up at the University of Minnesota for Valentines Day - right along with us! It'd be awesome to get a few more of these going! email me at kevinandlara@hotmail.com for my bake sale tip sheets to start one up at your children's hospital, or anywhere - we're focusing on Feb 13, 2009!
All those funds go toward clinical trials, just like the one Hans was just on. All we know for sure is what we are doing now isn't working for everyone. We need to get better, and the only way to do that is to keep asking the questions. I BELIEVE we can get better, and I am committed to doing what I can to help fund the answers. And what is so cool is that all of the parents up at TCH work together so well with the same goal.
Better run - have a good week.
Lara
Sunday, December 14, 2008
Special Prayer from St. Agatha - St. James Church
from the Shrine of the Holy Child Jesus A Place of Healing and Hope
Lord Jesus, you blessed children and held them in your arms. Once a child yourself, now you are a guardian of all children. In you I pray...
For those children who are most in need of your love and healing touch, especially [Hans, Patrick, Erin, Will, Colby, Michael, Sam and all the other children fighting this disease]. Watch over children we entrust to doctors, children with serious illnesses, and chidren whose nightmares will not go away in the light of day
Lord, gather in your arms those little ones who have been taken from our arms too soon, especially [Gracie, Haleigh, Carlie, Chloe, Ryan aka Batman, Blaine, Chloe, Max, Serenity, Nathan, Malachi, Luke and so many other children lost to this disease and other causes].
Bless those parents who share their children's pain, who bear a terrible cross in their own flesh. Help me place my fear and pain in your keepingHeavenly Father, we are all children in your care, watchover us and enfold us in your abiding, eternal love. AMEN.
I have been wanting to share this with you since I first found it two weeks ago,. I just think it's the perfect little prayer for our kids! I did pick up several copies of the prayer card, and I have some for you, but let me know if you want one. I also lit a candle for many of our kids at the shrine.
So, we did get discharged yesterday about 2pm after two nights on the 7th floor. Hans proceeded to make his decadent food requests the moment we got home. Hans feasted, and we paid a visit to the newly remodeled park near our house. It is good to be home. My mom is able to extend her stay (thanks to her brave sub at Kellogg Middle School!) It's a pretty crazy time of year to be so busy. I have been telling her she makes a very good elf! But, I think Elle thinks that is somehow offensive, she keeps telling me to stop saying that??? We are currently in the clinic again checking Potassium Levels here on Monday afternoon and praying that all is well.
Thanks for checking in on us. Lara and fam
Saturday, December 13, 2008
not sure if it's two steps forward and one step back, or one step forward and two steps back...
So - wow - sorry not to have posted again for a while-
To bring you up to speed - we were discharged Tuesday and had an enjoyable evening, checked out with the docs at CHOP on Weds, and hit the airport (we were affected by Houston ice/snow and clocked at least 9 hours in the Phila airport.) But we made it and were VERY HAPPY to be home. Thursday we had a day busy with unpacking, hitting Chili's with Sparrow Clubs and Elle's 4th grade Christmas Play to see her do her speaking role. It was VERY COOL that we were able to make it home for this! Of course she did great and it was fun to see all the kids we know shine! It would have really stank to miss it. Friday afternoon we were supposed to be in/out for a quick counts appointment, and then...
H's Potassium came back 'critically low' at 1.8 and we were rushed from clinic to the ER. Oddly enough, Hans didn't actually get a real Potassium intervention for almost 8 hours, but we did wind up getting admitted to the seventh floor (Progressive Care Unit) last night. Our little dude got 3 'Potassium runs' over the night and now his Potassium has recovered. We'll up his oral dose. He was pretty much all around tanking, so he is just now finishing up a red blood cell transfusion (HGB was 7.7 this am), and he has already received platelets (he was at 20 this am). He is also starting on GCSF - a cell growth stimulating factor to help his ANC (white count component) recover, which is now in the danger zone, dropping under 500.
Needless to say, this wasn't quite the weekend we had planned! What are ya gonna do?
This study we did at CHOP was a Phase I Clinic Trial. A Phase 1 Trial (in very layman's terms) tests the dosing limits of a drug. They are looking to see how much of a drug they can give before the side effects get too serious. As the trial goes on, the kids receive larger doses of MIBG in combination with a standard dose of Irinotecan and Vincristine. Hans was kid no. 20 (or so) on the trial aiming for 30 kiddos. We found out that he got 18 units of the MIBG, and that they started the first kiddo with about 6 units and they will proceed on up with the next kiddos until 31. We also found out that 18 is the same dose given when MIBG is just given on its own. In some ways - it is very scary to have Hans on a Phase One Trial. His Adrenal Insufficiency and his sensitivities can complicate things. Hans has been on stress doses of steroids for a while now, and it is likely that these stresses doses have been making him all too efficient at eliminating Electrolytes. So - we are tweaking a few things, and keeping him afloat!
Thanks for checking up on us - hope the next post is much more fun for you to read!
Lara
To bring you up to speed - we were discharged Tuesday and had an enjoyable evening, checked out with the docs at CHOP on Weds, and hit the airport (we were affected by Houston ice/snow and clocked at least 9 hours in the Phila airport.) But we made it and were VERY HAPPY to be home. Thursday we had a day busy with unpacking, hitting Chili's with Sparrow Clubs and Elle's 4th grade Christmas Play to see her do her speaking role. It was VERY COOL that we were able to make it home for this! Of course she did great and it was fun to see all the kids we know shine! It would have really stank to miss it. Friday afternoon we were supposed to be in/out for a quick counts appointment, and then...
H's Potassium came back 'critically low' at 1.8 and we were rushed from clinic to the ER. Oddly enough, Hans didn't actually get a real Potassium intervention for almost 8 hours, but we did wind up getting admitted to the seventh floor (Progressive Care Unit) last night. Our little dude got 3 'Potassium runs' over the night and now his Potassium has recovered. We'll up his oral dose. He was pretty much all around tanking, so he is just now finishing up a red blood cell transfusion (HGB was 7.7 this am), and he has already received platelets (he was at 20 this am). He is also starting on GCSF - a cell growth stimulating factor to help his ANC (white count component) recover, which is now in the danger zone, dropping under 500.
Needless to say, this wasn't quite the weekend we had planned! What are ya gonna do?
This study we did at CHOP was a Phase I Clinic Trial. A Phase 1 Trial (in very layman's terms) tests the dosing limits of a drug. They are looking to see how much of a drug they can give before the side effects get too serious. As the trial goes on, the kids receive larger doses of MIBG in combination with a standard dose of Irinotecan and Vincristine. Hans was kid no. 20 (or so) on the trial aiming for 30 kiddos. We found out that he got 18 units of the MIBG, and that they started the first kiddo with about 6 units and they will proceed on up with the next kiddos until 31. We also found out that 18 is the same dose given when MIBG is just given on its own. In some ways - it is very scary to have Hans on a Phase One Trial. His Adrenal Insufficiency and his sensitivities can complicate things. Hans has been on stress doses of steroids for a while now, and it is likely that these stresses doses have been making him all too efficient at eliminating Electrolytes. So - we are tweaking a few things, and keeping him afloat!
Thanks for checking up on us - hope the next post is much more fun for you to read!
Lara
Tuesday, December 09, 2008
Monday, December 08, 2008
yikes
Hi There -
Well, we had a little crazy weekend. I'm going to be quick, so I'll start off by saying we went out and had some good fun that Hans was up for on Saturday - hit the Aquarium in Camden NJ - Hans had fun hopping 2 subways to get there and he loved the hippos A LOT!!!
Then sunday - we quickly tanked. Basically, we found out that Hans is experiencing some nerve pain/neuropathy from the Vincristine. It's a little hard to manage his pain, so we took him into the ER yesterday and he wound up getting admitted with a high heart rate. We are about to start him on more morphine and then get him on a good oral pain med that he will take even at home for a while.
He's going to get his stem cells this afternoon, likely stay one more night inpatient, and Kevin is actually on his way back out here to be with us. The plan still is for us to go back home on Weds...
My mom flew out this morning to take over Elle Care. My mom and Kev will basically cross paths at the airport, so she was just able to pick up the car - so that part worked out well!
Thanks for your prayers for our little sweetie. He is doing okay - his symptoms were just sort of puzzling. I felt better after meeting with our team this morning!
Lara
Friday, December 05, 2008
10 days of chemo complete...
Hi Again,
We have finished up ten days of chemo now! Yay!
Hans has done very well. He has been all business about getting up and gong into clinic each day! You can tell that the electrolyte imbalances tire him out a little bit. We have been treating him with IV morphine for the MIBG infusion related pain all week in clinic. When his morphine goes in, he instantly perks up and he is more mobile and perkier for serveral hours.
Also Hans' counts are starting to trend down and I'm predicting that by late Saturday afternoon his ANC will require us to scale our activities back pretty good. We have beading, and reading and things to do in the room - or we'll take turns getting out and about! Then, first thing Monday morning, we show up at clinic for stem cells.
We missed a big day today down at TCH - I'd like to thank all of our friends and the many teachers and staff at Glen Loch who contributed to the bake sale. And thank you to Carmen, Monte and Michelle who worked the sale all day. Thanks to all the other TCH families who participated. This was a special memorial event to celebrate Haleigh, Chloe, Carlie, Ryan and Blaine and to raise reasearch dollars in their precious memories. It was also cool that Mark of the CNCF was able to be at our sale today! He was selling some of the second edition Lunch for Life Cookbooks, you can find these at www.lunchforlife.org.
Take care for now - we'll post more after the stem cells transplant, or sooner. Hopefully, Carmen will be able to treat us to some bake sale shots.
We have finished up ten days of chemo now! Yay!
Hans has done very well. He has been all business about getting up and gong into clinic each day! You can tell that the electrolyte imbalances tire him out a little bit. We have been treating him with IV morphine for the MIBG infusion related pain all week in clinic. When his morphine goes in, he instantly perks up and he is more mobile and perkier for serveral hours.
Also Hans' counts are starting to trend down and I'm predicting that by late Saturday afternoon his ANC will require us to scale our activities back pretty good. We have beading, and reading and things to do in the room - or we'll take turns getting out and about! Then, first thing Monday morning, we show up at clinic for stem cells.
We missed a big day today down at TCH - I'd like to thank all of our friends and the many teachers and staff at Glen Loch who contributed to the bake sale. And thank you to Carmen, Monte and Michelle who worked the sale all day. Thanks to all the other TCH families who participated. This was a special memorial event to celebrate Haleigh, Chloe, Carlie, Ryan and Blaine and to raise reasearch dollars in their precious memories. It was also cool that Mark of the CNCF was able to be at our sale today! He was selling some of the second edition Lunch for Life Cookbooks, you can find these at www.lunchforlife.org.
Take care for now - we'll post more after the stem cells transplant, or sooner. Hopefully, Carmen will be able to treat us to some bake sale shots.
Wednesday, December 03, 2008
Almost there...
Hey there.
Sorry, I did mean to post a little more often while up here! I should say chillin' up here - brrr it's cold - like 20's/30's in the morning on our brisk 20 to 30 minute walk to CHOP. But, we can deal handle it!
Hans is doing okay. He has finished day 3 of 5 of his irino. His electrolytes have been a little whacked, which makes him listless and we do get a little worried about him. We found out that his Potassium has just dropped low enough to treat. We've also been treating him for low sodium all week. He has lost two pounds up here! Yikes! It makes us pretty nervous when he starts to lose what little reserves he has. He is doing his best to make up for it. He has a favorite chips and salsa restaurant we've gone to several times, he orders mexican rice and sides of steak. He also is asking for more pepperoni pizza, chicken noodle soup and he's drinking a lot of root beer!
Hans likes to know how many more nights we have when we're visiting someplace. Tonight we have 7 more nights in Philly. Yesterday we ventured out a little to see Madagascar 2, and tonight, Hans seriously loved a visit from the Vet Pets - dogs of the employees at Penn Vet School. It was cool that he had a couple dogs to visit for an hour.
We were able to move back in to the Ronald McDonald House yesterday. (the first day we were eligible to be back here.) It's great! I really like it - it makes it much much easier to try to feed a little lion cub with a full service, fully stocked kitchen, than while staying in a hotel.
Thanks to Mayada for putting up flyers for the bake sale all around TCH! Awesome! the bake sale is on friday from 10 - 3 at TCH. And, thanks for everyone who has been able to bake or work the sale...
More later! Love, Lara
Sorry, I did mean to post a little more often while up here! I should say chillin' up here - brrr it's cold - like 20's/30's in the morning on our brisk 20 to 30 minute walk to CHOP. But, we can deal handle it!
Hans is doing okay. He has finished day 3 of 5 of his irino. His electrolytes have been a little whacked, which makes him listless and we do get a little worried about him. We found out that his Potassium has just dropped low enough to treat. We've also been treating him for low sodium all week. He has lost two pounds up here! Yikes! It makes us pretty nervous when he starts to lose what little reserves he has. He is doing his best to make up for it. He has a favorite chips and salsa restaurant we've gone to several times, he orders mexican rice and sides of steak. He also is asking for more pepperoni pizza, chicken noodle soup and he's drinking a lot of root beer!
Hans likes to know how many more nights we have when we're visiting someplace. Tonight we have 7 more nights in Philly. Yesterday we ventured out a little to see Madagascar 2, and tonight, Hans seriously loved a visit from the Vet Pets - dogs of the employees at Penn Vet School. It was cool that he had a couple dogs to visit for an hour.
We were able to move back in to the Ronald McDonald House yesterday. (the first day we were eligible to be back here.) It's great! I really like it - it makes it much much easier to try to feed a little lion cub with a full service, fully stocked kitchen, than while staying in a hotel.
Thanks to Mayada for putting up flyers for the bake sale all around TCH! Awesome! the bake sale is on friday from 10 - 3 at TCH. And, thanks for everyone who has been able to bake or work the sale...
More later! Love, Lara
Sunday, November 30, 2008
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
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
Friday, November 28, 2008
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
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
Thursday, November 27, 2008
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
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
Tuesday, November 25, 2008
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
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
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
Thursday, November 20, 2008
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
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
Saturday, November 15, 2008
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
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
Thursday, November 06, 2008
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
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
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
Monday, November 03, 2008
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!!!
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!!!
Wednesday, October 29, 2008
Round 3 Irino/Temodor
Hi -
Just a quick post to let everyone know what we've decided to do - we have started another round of Irino/Temodor. We are still waiting for the docs to get on the same page regarding Hans' scans. I guess they must really be on the ambiguous side. Dr. Russell sent them out to Michigan for a (3rd?) opinion. They do the MIBG up there too. So - at least he should be well considered.
The chemo is going fine. It took us quite a while to get started yesterday, but the rest of the week should go fairly quickly. I missed Erin and Patrick up at clinic yesterday since we had to start so late, but I think they're both doing okay. (More prayers for shrinkage for both, on their new therapies!) I did get to see our new friend, baby Michael, and I hope the poor little dude finally got a room!
Got some fundraiser things cooking:
Garage Sale in Spring: 4726 Rivertree Lane - Sat Nov 1st... If you want to come shop, or have things for sale. Sorry not to give you much notice, but I've been meaning to post this for a while. You could drop your things off with me. We are also going to have a second sale in College Station on the 8th...
Also - The Memorial Bake Sale has been rescheduled for Dec. 5th.
We have even booked the bridge for the Valentines Day Bake Sale - Feb 13th, 2009! If you are considering having a Valentines Day Bake Sale in your neck of the woods, you may be able to go ahead and reserve the space now. I know at TCH they won't let you reserve the spot more than 4 months out... Hint hint - these go REALLY WELL at children's hospitals, probably any hospitals. I have a tip sheet on starting a bake sale, and one for giving your volunteer bakers - you can email me at kevinandlara@hotmail.com and I'll send them to you!
I'm also working on my annual little Lunch for Life appeal post/email, but Kevin has sent me back for some fact-checking! So - I'll have it up in a few days. You know that we sure do appreciate your support.
Lara
PS - We had our insurance adjuster out yesterday! He turned out to be quite a nice and reasonable guy. We're still waiting on his final quote - but I think I might be able to live with it.
Just a quick post to let everyone know what we've decided to do - we have started another round of Irino/Temodor. We are still waiting for the docs to get on the same page regarding Hans' scans. I guess they must really be on the ambiguous side. Dr. Russell sent them out to Michigan for a (3rd?) opinion. They do the MIBG up there too. So - at least he should be well considered.
The chemo is going fine. It took us quite a while to get started yesterday, but the rest of the week should go fairly quickly. I missed Erin and Patrick up at clinic yesterday since we had to start so late, but I think they're both doing okay. (More prayers for shrinkage for both, on their new therapies!) I did get to see our new friend, baby Michael, and I hope the poor little dude finally got a room!
Got some fundraiser things cooking:
Garage Sale in Spring: 4726 Rivertree Lane - Sat Nov 1st... If you want to come shop, or have things for sale. Sorry not to give you much notice, but I've been meaning to post this for a while. You could drop your things off with me. We are also going to have a second sale in College Station on the 8th...
Also - The Memorial Bake Sale has been rescheduled for Dec. 5th.
We have even booked the bridge for the Valentines Day Bake Sale - Feb 13th, 2009! If you are considering having a Valentines Day Bake Sale in your neck of the woods, you may be able to go ahead and reserve the space now. I know at TCH they won't let you reserve the spot more than 4 months out... Hint hint - these go REALLY WELL at children's hospitals, probably any hospitals. I have a tip sheet on starting a bake sale, and one for giving your volunteer bakers - you can email me at kevinandlara@hotmail.com and I'll send them to you!
I'm also working on my annual little Lunch for Life appeal post/email, but Kevin has sent me back for some fact-checking! So - I'll have it up in a few days. You know that we sure do appreciate your support.
Lara
PS - We had our insurance adjuster out yesterday! He turned out to be quite a nice and reasonable guy. We're still waiting on his final quote - but I think I might be able to live with it.
Friday, October 24, 2008
Still sort of playing the waiting game...
Genna, Sydney, and Elle modeling some of Elle's lanyards
Mrs. McGraw (Elle's music and choir teacher) and Mrs. Hertzenberg (Elle's principal)with Elle, sporting their new lanyards
Hans, finger painting at home this week. My sneaky trick to get him into the bath!
So, wow, I wouldn't have thought that a week later we'd still officially be playing the waiting game. But - such is life! TCH Fed Ex'd the scans to Dr. Maris at CHOP, but they didn't make it into his hands before he had to leave for COG (Children's Oncology Group meeting this week in Denver, where he'll meet up with Dr. Russell and all of the other NB docs). So we don't have his official recommendation re: the MIBG therapy. So, as it stands right now, we are most likely going to start up Hans on another round of Irinotecan/Temodor Monday - unless Dr. Maris contacts us sooner than Monday at 10:45 am.... ARGH! But, this extra week off (although terrifying) has been ultimately relaxing - allowing us a chance to catch up and take a breath. We usually won't allow Hans to sit around for extra days off treatment - but that, I guess, is the drawback of having multiple centers looking at your kid. The waiting time somehow increases exponentially as it is tricky for these docs to share information and put their heads together. However, since Hans' scans are somewhat ambiguous at this point, we are extremely pleased that there will be multiple sets of trained eyes on them. Hopefully the medical advice we get won't be so contrasting that we're making a stretch to come up with the 'best' decision...
If MIBG is not indicated at this time - we will try to arrange a consult with the folks up at Memorial Sloan Kettering (MSKCC) in NYC, and possibly another team in Vermont! I am having a very tough time fighting the urge to stay away from the shops to update my winter wardrobe. Luckily I found a 20% off Macy's coupon in the paper today;) And I found some cute fleece pants for Hans from Old Navy. He won't wear denim. I think it's because he was in such pain with his large belly tumor upon diagnosis, that he has a strong neg. association with snug-fitting clothes - hence, his preference for his jammies. I'm going to go back and stock up on these fleece pants in every color to be ready for whatever consult we need to go on...
We are floating along nicely this week - sort of in a bubble of protection from the good news on the scans. When you're relapsed NB, though, you're always wondering how temporary your foothold on safety might be. We're trying to find the most proactive next-move, but it's a tough call...
Thanks for checking up on us, and have a groovy weekend!
Lara
Mrs. McGraw (Elle's music and choir teacher) and Mrs. Hertzenberg (Elle's principal)with Elle, sporting their new lanyards
Hans, finger painting at home this week. My sneaky trick to get him into the bath!
So, wow, I wouldn't have thought that a week later we'd still officially be playing the waiting game. But - such is life! TCH Fed Ex'd the scans to Dr. Maris at CHOP, but they didn't make it into his hands before he had to leave for COG (Children's Oncology Group meeting this week in Denver, where he'll meet up with Dr. Russell and all of the other NB docs). So we don't have his official recommendation re: the MIBG therapy. So, as it stands right now, we are most likely going to start up Hans on another round of Irinotecan/Temodor Monday - unless Dr. Maris contacts us sooner than Monday at 10:45 am.... ARGH! But, this extra week off (although terrifying) has been ultimately relaxing - allowing us a chance to catch up and take a breath. We usually won't allow Hans to sit around for extra days off treatment - but that, I guess, is the drawback of having multiple centers looking at your kid. The waiting time somehow increases exponentially as it is tricky for these docs to share information and put their heads together. However, since Hans' scans are somewhat ambiguous at this point, we are extremely pleased that there will be multiple sets of trained eyes on them. Hopefully the medical advice we get won't be so contrasting that we're making a stretch to come up with the 'best' decision...
If MIBG is not indicated at this time - we will try to arrange a consult with the folks up at Memorial Sloan Kettering (MSKCC) in NYC, and possibly another team in Vermont! I am having a very tough time fighting the urge to stay away from the shops to update my winter wardrobe. Luckily I found a 20% off Macy's coupon in the paper today;) And I found some cute fleece pants for Hans from Old Navy. He won't wear denim. I think it's because he was in such pain with his large belly tumor upon diagnosis, that he has a strong neg. association with snug-fitting clothes - hence, his preference for his jammies. I'm going to go back and stock up on these fleece pants in every color to be ready for whatever consult we need to go on...
We are floating along nicely this week - sort of in a bubble of protection from the good news on the scans. When you're relapsed NB, though, you're always wondering how temporary your foothold on safety might be. We're trying to find the most proactive next-move, but it's a tough call...
Thanks for checking up on us, and have a groovy weekend!
Lara
Tuesday, October 21, 2008
Marrow Clean!
Hey - we got some super news last night that Hans' Bone Marrow is clean.
Halleluia! I'm so pleased. Dr. Shohet gave us the call last night and said,
"this is really good, I am really pleased with Hans right now."
So are we! I was happy to see that he was up for a little adventure by going to check out our dinosaur museum again yesterday. It's been a while since we made it up there.
Kevin is doing really pretty well. He went into work all last week, and I don't think the driving has been that bad on him.
We're just waiting for Dr. Maris to give his 2 cents and we'll see the next step...
Lara
Halleluia! I'm so pleased. Dr. Shohet gave us the call last night and said,
"this is really good, I am really pleased with Hans right now."
So are we! I was happy to see that he was up for a little adventure by going to check out our dinosaur museum again yesterday. It's been a while since we made it up there.
Kevin is doing really pretty well. He went into work all last week, and I don't think the driving has been that bad on him.
We're just waiting for Dr. Maris to give his 2 cents and we'll see the next step...
Lara
Monday, October 20, 2008
Slight Improvement
Hey - we got word yesterday that the MIBG scan showed slight improvement in the small spot on the liver, and that the left arm - humerus (we had previously thought it was leg, but it was arm) is unchanged!!! Let me just rejoice for a minute here!!! This is great since it is not spreading, not progression! JOY! Kevin and I were a little concerned when Hans said his back hurt a little bit last weekend. But I really didn't want to put my fears out there on the blog... Spine was clear!
This leaves us waiting on decisions before we get the next step. We need to get the scans to Dr. Maris at CHOP and he needs to evaluate them so he can decide if Hans is eligible for MIBG therapy. My logic speculates that if Maris sees improvement on scans he thought already looked good, that he wouldn't consider MIBG an option for Hans at this time. We can always keep up the Irino/Temodor for a while. The good thing about this therapy is that it is fairly do-able! We only have 5 short clinic days and then 2 full weeks off, Hans' counts don't drop too low, and the overall quality of life is pretty great. I do notice that he is losing a tiny bit of weight and his moodiness is a little bit more unpredictable. But, he doesn't have any physical complaints.
Kevin and I feel like we're in a pretty good place to take a breath and consider our options. Waiting for Maris, waiting for the Bone Marrow to come back (Weds, Thurs...?)
That's all we know right now. The pressure is sort of on though. If we are doing more Irino/Temodor, the schedule dictates we should start TODAY. That's not going to happen, since the scans can't get to Maris until tomorrow, and I have no idea when his schedule will allow him to review them and make a rcommendation. Kevin and I get extremely nervous when start dates get pushed back. I guess we look at it like - that's the only thing we have control of - keeping on track...
Thanks for checking up on us - I'm going to go play Wii with Hansie...
Lara
This leaves us waiting on decisions before we get the next step. We need to get the scans to Dr. Maris at CHOP and he needs to evaluate them so he can decide if Hans is eligible for MIBG therapy. My logic speculates that if Maris sees improvement on scans he thought already looked good, that he wouldn't consider MIBG an option for Hans at this time. We can always keep up the Irino/Temodor for a while. The good thing about this therapy is that it is fairly do-able! We only have 5 short clinic days and then 2 full weeks off, Hans' counts don't drop too low, and the overall quality of life is pretty great. I do notice that he is losing a tiny bit of weight and his moodiness is a little bit more unpredictable. But, he doesn't have any physical complaints.
Kevin and I feel like we're in a pretty good place to take a breath and consider our options. Waiting for Maris, waiting for the Bone Marrow to come back (Weds, Thurs...?)
That's all we know right now. The pressure is sort of on though. If we are doing more Irino/Temodor, the schedule dictates we should start TODAY. That's not going to happen, since the scans can't get to Maris until tomorrow, and I have no idea when his schedule will allow him to review them and make a rcommendation. Kevin and I get extremely nervous when start dates get pushed back. I guess we look at it like - that's the only thing we have control of - keeping on track...
Thanks for checking up on us - I'm going to go play Wii with Hansie...
Lara
Friday, October 17, 2008
waiting game
Hans and our neighbor Zach had a little photo session yesterday...
Hi - we'll post when we know but for right now we're just playing the waiting game.
We now have one more round of scans under our belt. We only did the Marrow and the MIBG. The docs didn't think we needed a Bone Scan or a CT.
So there's really no news. Elle has been working diligently on her orders from school and we've even come up with a Lanyard Project order form and a new email address for orders: lanyardproject@live.com. The project is going really well!
Elle has some other big news... She made the cut for her school's district wide fun-run. She just missed the cut last year and this was her major goal for the year. She's enjoying some of the priveledges of being a 4th grader, the seniors of her campus. She signed up for choir on Thursdays after school, and she is a 'gator gaurd' this week and next week. (The big kids that get to school early to open the doors for kids getting dropped off at school...) We've been a little slow with her Bluebonnet Reading this year, but we're working on it - you can see the Texas Bluebonnet award winning booklist here: http://www.txla.org/groups/tba/nominees.html
In other news, that's not nearly as exciting. We've kind of changed our plans for Hans' school year. It has been pretty tough for him, with all the ups and downs of treatment, and the hurricane, and, I think, mostly the inability to get into a routine... We've talked with the principal, our staff at TCH, the teacher, and we're sort of following Hans' lead and deciding to wait until next year to give Kinder a start. It may sound a little crazy - but it was just a major battle to drag him out of bed on the days he was suddenly, unexpectedly supposed to be going to school. He loved it once he got up there, and we couldn't have loved his teachers and the staff any better. But, essentially, it was a little much. So - we'll try again next year! Crossing our fingers and hoping for the best. The whole thing makes me feel a little flaky - but I think it all boils down to Hans being a little sensitive and fragile, and if we can conserve his energy and let him do what he wants this year, we'll start him up next year. I guess we all just do the best we can, huh?
Okay - I'll post again after we have scan results.
Lara
PS - Erin got stable results. We were hoping for shrinkage... but at least there was no more progression...
Hi - we'll post when we know but for right now we're just playing the waiting game.
We now have one more round of scans under our belt. We only did the Marrow and the MIBG. The docs didn't think we needed a Bone Scan or a CT.
So there's really no news. Elle has been working diligently on her orders from school and we've even come up with a Lanyard Project order form and a new email address for orders: lanyardproject@live.com. The project is going really well!
Elle has some other big news... She made the cut for her school's district wide fun-run. She just missed the cut last year and this was her major goal for the year. She's enjoying some of the priveledges of being a 4th grader, the seniors of her campus. She signed up for choir on Thursdays after school, and she is a 'gator gaurd' this week and next week. (The big kids that get to school early to open the doors for kids getting dropped off at school...) We've been a little slow with her Bluebonnet Reading this year, but we're working on it - you can see the Texas Bluebonnet award winning booklist here: http://www.txla.org/groups/tba/nominees.html
In other news, that's not nearly as exciting. We've kind of changed our plans for Hans' school year. It has been pretty tough for him, with all the ups and downs of treatment, and the hurricane, and, I think, mostly the inability to get into a routine... We've talked with the principal, our staff at TCH, the teacher, and we're sort of following Hans' lead and deciding to wait until next year to give Kinder a start. It may sound a little crazy - but it was just a major battle to drag him out of bed on the days he was suddenly, unexpectedly supposed to be going to school. He loved it once he got up there, and we couldn't have loved his teachers and the staff any better. But, essentially, it was a little much. So - we'll try again next year! Crossing our fingers and hoping for the best. The whole thing makes me feel a little flaky - but I think it all boils down to Hans being a little sensitive and fragile, and if we can conserve his energy and let him do what he wants this year, we'll start him up next year. I guess we all just do the best we can, huh?
Okay - I'll post again after we have scan results.
Lara
PS - Erin got stable results. We were hoping for shrinkage... but at least there was no more progression...
Tuesday, October 14, 2008
This Week...
Hi,
Sorry to those of you who have left messages on our machine - we just cleared the VM so now I'll try to stay on top of calls a little better. I've been sort of treading water. I finally got the 6th and final TRUCK LOAD of hurricane IKE debris cleared from the yard this weekend and the insurance adjuster is supposed to come by this morning. I hope that it goes well!!! For those of you in The Woodlands who didn't know - the Budde Road recycling center has an excellent free service - just bring any yard waste or other wreckage and they unload it for you for free! BTW Kevin has gotten to feel progressively better each day and is giving it a shot and going into work today. We've heard that driving after surgery can be the hardest part. Too bad he's got a tough commute and drives a stick...
We have one more day off before two days of scans and then results. Thanks for your prayers! Not just for Hans, but there are always others... it's been a while since I mentioned our little TCH friends, but our 6th grade friend Erin is doing all of her scans today. Patrick had some progression at last scans and is doing a change up in therapy. Colby is stable and will soon get his port removed! There are a couple of TCH kiddos that remain stable and in NED - Alex, Will, Roman, John T. and Layla to name a few...there are also a couple of new faces - little Michael, and I think a couple I haven't even met!
On another note - our lanyard project is going pretty well. Thanks to all the GLEN LOCH teachers and staff for their orders. We're coming along with them slowly but surely. We've come up with some pretty cute ways to do school colors. E's GS troop took some down time on their camping trip this weekend to do lanyards as a service project. They turned out cute. I set up Ms. Neimeyer's troop with some red and green school colors lanyards too - can't wait to see how they turn out! Let me know if you have an order - we can make it in the colors you want - school colors for teacher gifts, whatever... kevinandlara@hotmail.com... $15 ea.. Elle and I bought some leather and large (masculine-type)beads and we are trying to work up a 'dude lanyard' prototype...probably more for the 'free spirit' dudes out there needing to wear a work ID badge... Remember, proceeds go to NB research through the newly founded Houston chapter of the Children's Neuroblastoma Cancer Foundation.
Will update as we get through scans...
Lara
Sorry to those of you who have left messages on our machine - we just cleared the VM so now I'll try to stay on top of calls a little better. I've been sort of treading water. I finally got the 6th and final TRUCK LOAD of hurricane IKE debris cleared from the yard this weekend and the insurance adjuster is supposed to come by this morning. I hope that it goes well!!! For those of you in The Woodlands who didn't know - the Budde Road recycling center has an excellent free service - just bring any yard waste or other wreckage and they unload it for you for free! BTW Kevin has gotten to feel progressively better each day and is giving it a shot and going into work today. We've heard that driving after surgery can be the hardest part. Too bad he's got a tough commute and drives a stick...
We have one more day off before two days of scans and then results. Thanks for your prayers! Not just for Hans, but there are always others... it's been a while since I mentioned our little TCH friends, but our 6th grade friend Erin is doing all of her scans today. Patrick had some progression at last scans and is doing a change up in therapy. Colby is stable and will soon get his port removed! There are a couple of TCH kiddos that remain stable and in NED - Alex, Will, Roman, John T. and Layla to name a few...there are also a couple of new faces - little Michael, and I think a couple I haven't even met!
On another note - our lanyard project is going pretty well. Thanks to all the GLEN LOCH teachers and staff for their orders. We're coming along with them slowly but surely. We've come up with some pretty cute ways to do school colors. E's GS troop took some down time on their camping trip this weekend to do lanyards as a service project. They turned out cute. I set up Ms. Neimeyer's troop with some red and green school colors lanyards too - can't wait to see how they turn out! Let me know if you have an order - we can make it in the colors you want - school colors for teacher gifts, whatever... kevinandlara@hotmail.com... $15 ea.. Elle and I bought some leather and large (masculine-type)beads and we are trying to work up a 'dude lanyard' prototype...probably more for the 'free spirit' dudes out there needing to wear a work ID badge... Remember, proceeds go to NB research through the newly founded Houston chapter of the Children's Neuroblastoma Cancer Foundation.
Will update as we get through scans...
Lara
Saturday, October 11, 2008
I guess it's not all black and white...
There was another piece of the consult in Philapelphia that sort of threw me for a loop. It has taken me a couple of days to post about it - while I wrap my mind around it. At some point in the conversation, Dr. Maris said - 'I don't see anything on the last scans.' What? Okay. I said, 'you mean Neuroblastoma?' He confirmed. However, he did explain that when you are looking at a scan saved on a disc, you can't manipulate it - adjust the contrast - zoom in to questionable areas, etc. I remembered our last scan review appointment, and Dr. Russell said she wouldn't have seen it. But, the radiologists in our Nuc Med department found two areas, so - there definately could have been something there.
Then, for the rest of the consult - it seemed like Dr. Maris spent more time focusing on options we could look at if Hans is NED after scans next week, than he did discussing what to do if his MIBG lights up.
No one knows what the scans will look like until we go through them - but I thought I'd post about all this because now we all have one more reason to pray for those pretty, clean scans.
Life is a trip.
Lara
Then, for the rest of the consult - it seemed like Dr. Maris spent more time focusing on options we could look at if Hans is NED after scans next week, than he did discussing what to do if his MIBG lights up.
No one knows what the scans will look like until we go through them - but I thought I'd post about all this because now we all have one more reason to pray for those pretty, clean scans.
Life is a trip.
Lara
Thursday, October 09, 2008
Back from CHOP!
Hans, entertaining me with air guitar and lip synch at yesterday's lunch at Mad Mex
Hans, playing DS in the Suite - Sweet! Check out the new hair coming in on the irino/temodor;)
Hi guys -
Thanks for your emails, calls and thoughts and prayers. Kevin made it through his umbilical hernia surgery okay (ouch, just in some pain!), and Hans and I made it back from CHOP. I was so stressed about just making it all happen, I hadn't exactly expected to have such a pleasant experience. Hans and I enjoyed checking out a new city. I tried to frame the trip as "hopping on a plane to meet one of Dr. Russell's friends". He wasn't really on board until he got an idea - the morning before we left, he asked, "do they have pancakes up the hotel?" As soon as I replied Yes - he was sold. So - Hans ate his way through Philadelphia. We compliment each other well, since he is a little lion cub carnivore, and I'm more of a semi-vegitarian, or as my friend Josie used to call it a 'chickitarian' - he could order the NY strip steak, and I enjoyed the sides. He ate his first street Hot Dog, and a student in the U. Penn area pointed us in the right direction to chips and salsa when he needed them. The only time Hans had a problem was when we had to push away from the breakfast table (pancakes, ham steak, etc.) to make it to the appointment. He actually cried and screamed through the streets on our short walk to the hospital. Going into a new hospital is always a maze. We were somewhat bewildered trying to find the right elevator to get into the Wood Building when an angel of an employee championed the cause of pushing the stroller while I held a screaming/crying Hans, and she got us to the right spot. It actually has ceased to amaze me now that things happen like that. A stranger will just fall out of the sky and push the stroller for you when you really need it. Thanks to that lady - I told her she was an angel. I hope she didn't get in trouble for being late to work!
As soon as we got into the clinic, as I had hoped and figured, Hans calmed down and got into clinic waiting mode - just playing his DS and waiting it out. The consultation went great. The plan is just to get a look at Hans' scans next week, and get a second bone marrow aspiration done. If there is still activity on the MIBG scan, then we will likely do the MIBG treatment up at CHOP the end of this month. If not, then, that's great news and we have other options to look into...
We have a long list of thank you's to people who helped get us through these past two days - TWO of our neighbors who brought meals last night - Dan and Cindy, and Pam and Rick! Carmen who not only got Kevin to and from the procedure, but filled his prescriptions and picked Hans and I up from the airport, Anne who dropped us off. All those donors who gave us the miles for the flight, the Dillon family (friends of Michelle) who donated Sheraton hotel points. We stayed in a beautiful suite after we found out the Ronald McDonald House was full. And, thanks to our Sparrow Club friend Dodie - who pulled some strings and got us a special announcement on the Plane and a tour of the cockpit. Fun! And thanks to Pati and Tom and my mom's friend Christine who sent us special gifts that made this week a little easier!
Hans, playing DS in the Suite - Sweet! Check out the new hair coming in on the irino/temodor;)
Hi guys -
Thanks for your emails, calls and thoughts and prayers. Kevin made it through his umbilical hernia surgery okay (ouch, just in some pain!), and Hans and I made it back from CHOP. I was so stressed about just making it all happen, I hadn't exactly expected to have such a pleasant experience. Hans and I enjoyed checking out a new city. I tried to frame the trip as "hopping on a plane to meet one of Dr. Russell's friends". He wasn't really on board until he got an idea - the morning before we left, he asked, "do they have pancakes up the hotel?" As soon as I replied Yes - he was sold. So - Hans ate his way through Philadelphia. We compliment each other well, since he is a little lion cub carnivore, and I'm more of a semi-vegitarian, or as my friend Josie used to call it a 'chickitarian' - he could order the NY strip steak, and I enjoyed the sides. He ate his first street Hot Dog, and a student in the U. Penn area pointed us in the right direction to chips and salsa when he needed them. The only time Hans had a problem was when we had to push away from the breakfast table (pancakes, ham steak, etc.) to make it to the appointment. He actually cried and screamed through the streets on our short walk to the hospital. Going into a new hospital is always a maze. We were somewhat bewildered trying to find the right elevator to get into the Wood Building when an angel of an employee championed the cause of pushing the stroller while I held a screaming/crying Hans, and she got us to the right spot. It actually has ceased to amaze me now that things happen like that. A stranger will just fall out of the sky and push the stroller for you when you really need it. Thanks to that lady - I told her she was an angel. I hope she didn't get in trouble for being late to work!
As soon as we got into the clinic, as I had hoped and figured, Hans calmed down and got into clinic waiting mode - just playing his DS and waiting it out. The consultation went great. The plan is just to get a look at Hans' scans next week, and get a second bone marrow aspiration done. If there is still activity on the MIBG scan, then we will likely do the MIBG treatment up at CHOP the end of this month. If not, then, that's great news and we have other options to look into...
We have a long list of thank you's to people who helped get us through these past two days - TWO of our neighbors who brought meals last night - Dan and Cindy, and Pam and Rick! Carmen who not only got Kevin to and from the procedure, but filled his prescriptions and picked Hans and I up from the airport, Anne who dropped us off. All those donors who gave us the miles for the flight, the Dillon family (friends of Michelle) who donated Sheraton hotel points. We stayed in a beautiful suite after we found out the Ronald McDonald House was full. And, thanks to our Sparrow Club friend Dodie - who pulled some strings and got us a special announcement on the Plane and a tour of the cockpit. Fun! And thanks to Pati and Tom and my mom's friend Christine who sent us special gifts that made this week a little easier!
Monday, October 06, 2008
Photojournal link
I think this link is worth checking out (sorry - copy and paste, I guess): http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html
It's a photo journal of some of the brave children fighting the fight against pediatric cancer. I completely missed the opportunity to share with you that September is Pediatric Cancer Awareness month. September '08 was not the best month on the books for us - we're glad to flip the calendar and hope for better.
In a couple of weeks, we'll send around an email and post about this year's Lunch for Life campaign. This will give everyone an opportunity to chip in a little bit to support research efforts. Your support of this cause is very important to us.
For now - it's just business as usual - preparing for a big week with the CHOP consult, and Kevin's surgery. We are grateful to be in your thoughts and prayers.
It's a photo journal of some of the brave children fighting the fight against pediatric cancer. I completely missed the opportunity to share with you that September is Pediatric Cancer Awareness month. September '08 was not the best month on the books for us - we're glad to flip the calendar and hope for better.
In a couple of weeks, we'll send around an email and post about this year's Lunch for Life campaign. This will give everyone an opportunity to chip in a little bit to support research efforts. Your support of this cause is very important to us.
For now - it's just business as usual - preparing for a big week with the CHOP consult, and Kevin's surgery. We are grateful to be in your thoughts and prayers.
Friday, October 03, 2008
We Have Tickets!
Just wanted to post the latest - we have tickets to Philadelphia! Hans and I will fly in Tuesday and fly out Wednesday. It took 100,000 donated miles to fly on such short notice w/o a Saturday stay, but thank goodness we had them. I am looking forward to meeting with Dr. Maris.
Thank you to: The Lounsbury family, and the Malone's, for additional miles donations, as well as our friends The Arangos - they were the first to offer to donate miles!
Hans is on Day 5 of Irino/Temodor today. We'll be celebrating as we are outta there this afternoon! He is doing well - it has just been a little too much to try to do Kindergarten in the AM and then treatment all afternoon. We're looking forward to being back at Glen Loch on Monday before it's off to Philadelphia on Tuesday...
Lara
Thank you to: The Lounsbury family, and the Malone's, for additional miles donations, as well as our friends The Arangos - they were the first to offer to donate miles!
Hans is on Day 5 of Irino/Temodor today. We'll be celebrating as we are outta there this afternoon! He is doing well - it has just been a little too much to try to do Kindergarten in the AM and then treatment all afternoon. We're looking forward to being back at Glen Loch on Monday before it's off to Philadelphia on Tuesday...
Lara
Thursday, October 02, 2008
Thank You!
We got some news about our insurance and Cincinnati this week - we'd be out of network there and that could lead to some very LARGE medical bills. So, as of Tuesday morning it was back to the drawing board. Within 36 hours - we had a new plan - Hans will now be seen for an MIBG consultation in Philadelphia next week, and the rest of the plan will follow along pretty much the same as I had described before. Scans will be 10/14 and 10/15! CHOP (Children's Hospital of Philadelphia) is really top-notch - Dr. Maris, the Doc we'll be seeing up there is world class. He is the one who discovered the genetic component to NB a couple of months ago.
The only new exception is that Kev has to have surgery next week - so he'll likely stay here with Elle and Hans and I will make the trip to Philly. We think he pulled something while he was getting the tree off the roof! It's a hernia, and he's in quite a bit of pain - poor dude! I'm glad he went right in to get it checked out. His surgery is scheduled for Wednesday - same day as Hans' consultation.
I owe thank yous to:
Ellen Shohet at TCH who has worked really hard coordinating us with three hospitals and never complaining when I change my mind!
Michelle Nolen researched a special program called CAREFORCE through Continental that provides flight assistance to families traveling for medical purposes and she sent out an email to a few of our friends and contacts yesterday - and she was able to able to acquire enough donated miles in one day for Hans and one caregiver to make FOUR or FIVE trips for medical treatment or consultation. (The number of miles charged depends on how booked the flight is.) People donated 266,000 miles yesterday! Pretty amazing! If there are other families out there who could benefit from this program, please email me and I'll give you the contact info.
Thank you to: The Marek Family, The Arnett Family, The Garrett Family, The Watthuber Family, The Diket Family, and The Neveu's for their generous donations of miles. With those donations we will be able to travel to Philly for consultation, and treatment. I was beginning to panic about buying tickets on such short notice. The last time I looked, it was going to cost us $1198 per ticket to get to Cincinnati on a week's notice. What a really incredible donation that has helped us out tremendously. Careforce also has a program where they will simply buy you a ticket to travel for medical treatment every 12 months. They waived the transfer fee to donate these miles.
Darren, Alana, and Dave, thanks for helping Elle and I clean up the yard after the disaster crew came through and picked up the two large piles that once was our tree!
Kev wanted to be out there - but his darn hernia...
lara
The only new exception is that Kev has to have surgery next week - so he'll likely stay here with Elle and Hans and I will make the trip to Philly. We think he pulled something while he was getting the tree off the roof! It's a hernia, and he's in quite a bit of pain - poor dude! I'm glad he went right in to get it checked out. His surgery is scheduled for Wednesday - same day as Hans' consultation.
I owe thank yous to:
Ellen Shohet at TCH who has worked really hard coordinating us with three hospitals and never complaining when I change my mind!
Michelle Nolen researched a special program called CAREFORCE through Continental that provides flight assistance to families traveling for medical purposes and she sent out an email to a few of our friends and contacts yesterday - and she was able to able to acquire enough donated miles in one day for Hans and one caregiver to make FOUR or FIVE trips for medical treatment or consultation. (The number of miles charged depends on how booked the flight is.) People donated 266,000 miles yesterday! Pretty amazing! If there are other families out there who could benefit from this program, please email me and I'll give you the contact info.
Thank you to: The Marek Family, The Arnett Family, The Garrett Family, The Watthuber Family, The Diket Family, and The Neveu's for their generous donations of miles. With those donations we will be able to travel to Philly for consultation, and treatment. I was beginning to panic about buying tickets on such short notice. The last time I looked, it was going to cost us $1198 per ticket to get to Cincinnati on a week's notice. What a really incredible donation that has helped us out tremendously. Careforce also has a program where they will simply buy you a ticket to travel for medical treatment every 12 months. They waived the transfer fee to donate these miles.
Darren, Alana, and Dave, thanks for helping Elle and I clean up the yard after the disaster crew came through and picked up the two large piles that once was our tree!
Kev wanted to be out there - but his darn hernia...
lara
Monday, September 29, 2008
So, I Think We Have a Plan
Hi -
We had some real ups and downs last week (or, should I just say downs?) with getting information. As of last week, we were under the impression that we'd be traveling this week to UCSF (University of California at San Francisco) to receive MIGB treatment for Hans. Wednesday morning I actually made contact with nurses at UCSF for the first time. I learned that they were planning on having Hans come for a CONSULTATION. I immediately went into a panic when they told me he wouldn't be slated for treatment until Oct. 7th or 23rd. That would mean letting him go untreated (letting this stuff grow in his little body) for too many extra days. Many convoluted emails and phone calls later (I'll spare you the blow-by-blow),but at about 4:55pm on Friday, we 'confirmed' a new plan. Hans will receive one more round of Irinotecan/Temodor this week on an outpatient basis in clinic at TCH. Kevin and Hans will travel to Cincinnati for a consultation next week, the following week he will undergo another MIBG scan. (Please PRAY that the Irinotecan Temodor is keeping his tumors under control - or, better yet, for pretty, clean scans once again). Then the following week, the week of October 27th, will tentatively be the MIBG therapy up in Cincinnati, Ohio. As it stands now, all of us will be going, and my mom will join us up there as well.
It's terribly sad that we won't be able to be right there in California where we have the love and support of Roxie (Hans' Godmother), Megan and Phil, our good friends, the new beautiful baby Desmond who was born on July 16th and who we are all dying to meet, our friend Aimee, who was willing to drive up from L.A. to help give us more love and support, and all of their parents and siblings who we love, and who love us, and they all treated us like family when we were in Santa Cruz, CA for Kevin's Grad program. I think I'm grieving the loss of all that right now. BUT - the most important thing is Hans' timely and effective treatment. So - Ohio - here we come! Cincinnati Children's Hospital is in the Top Five in the country. And, they are on the cutting edge with this MIBG treatment for NB - being one of only 5 hospitals in the country to offer it. Furthermore, we are impressed at their willingness to get Hans on their calendar in a timely manner.
Life has been a little 'intense' these past weeks, as we are trying to figure out how to handle all of this, in addition to crawling out from under Hurricane Ike - but we seem to 'get by with a little help from our friends' and family! Thanks for your support during this crazy time. I keep finding myself saying "this is insane!"
Lara
We had some real ups and downs last week (or, should I just say downs?) with getting information. As of last week, we were under the impression that we'd be traveling this week to UCSF (University of California at San Francisco) to receive MIGB treatment for Hans. Wednesday morning I actually made contact with nurses at UCSF for the first time. I learned that they were planning on having Hans come for a CONSULTATION. I immediately went into a panic when they told me he wouldn't be slated for treatment until Oct. 7th or 23rd. That would mean letting him go untreated (letting this stuff grow in his little body) for too many extra days. Many convoluted emails and phone calls later (I'll spare you the blow-by-blow),but at about 4:55pm on Friday, we 'confirmed' a new plan. Hans will receive one more round of Irinotecan/Temodor this week on an outpatient basis in clinic at TCH. Kevin and Hans will travel to Cincinnati for a consultation next week, the following week he will undergo another MIBG scan. (Please PRAY that the Irinotecan Temodor is keeping his tumors under control - or, better yet, for pretty, clean scans once again). Then the following week, the week of October 27th, will tentatively be the MIBG therapy up in Cincinnati, Ohio. As it stands now, all of us will be going, and my mom will join us up there as well.
It's terribly sad that we won't be able to be right there in California where we have the love and support of Roxie (Hans' Godmother), Megan and Phil, our good friends, the new beautiful baby Desmond who was born on July 16th and who we are all dying to meet, our friend Aimee, who was willing to drive up from L.A. to help give us more love and support, and all of their parents and siblings who we love, and who love us, and they all treated us like family when we were in Santa Cruz, CA for Kevin's Grad program. I think I'm grieving the loss of all that right now. BUT - the most important thing is Hans' timely and effective treatment. So - Ohio - here we come! Cincinnati Children's Hospital is in the Top Five in the country. And, they are on the cutting edge with this MIBG treatment for NB - being one of only 5 hospitals in the country to offer it. Furthermore, we are impressed at their willingness to get Hans on their calendar in a timely manner.
Life has been a little 'intense' these past weeks, as we are trying to figure out how to handle all of this, in addition to crawling out from under Hurricane Ike - but we seem to 'get by with a little help from our friends' and family! Thanks for your support during this crazy time. I keep finding myself saying "this is insane!"
Lara
Saturday, September 27, 2008
Wow - Hans is Featured Sparrow Child on Nat'l Website
Okay - I guess Hans is just a star this week - one more site to check out! http://www.sparrowclubs.org/ You'll see Hans there as the featured Sparrow Child.
I really can't say enough about this program. The whole idea is that students adopt a sparrow child for a year and do service and fundraising for a medically fragile child's family. It was pretty moving and powerful to be there yesterday. Sparrow clubs is the nation's only youth-based charity program. I think it's truly wonderful. If you are involved with a school, or have a student - maybe you would be interested in looking into the sparrow clubs program for your community. It's truly a win-win-win. I must say thanks to Carmen, she forwarded me an email about last year's sparrow child and I just kept it in the back of my mind, and then found out that Alison Kilway was desperately looking for a new Sparrow Child in The Woodlands. Fate.
There is a chance they could need another Sparrow Child in The Woodlands this year. Please email me if you have an idea of a child who lives in The Woodlands kevinandlara@hotmail.com.
Proud mama moment - Elle scored 1 goal and had 2 assists today - way to go sportyspice!
Lara
I really can't say enough about this program. The whole idea is that students adopt a sparrow child for a year and do service and fundraising for a medically fragile child's family. It was pretty moving and powerful to be there yesterday. Sparrow clubs is the nation's only youth-based charity program. I think it's truly wonderful. If you are involved with a school, or have a student - maybe you would be interested in looking into the sparrow clubs program for your community. It's truly a win-win-win. I must say thanks to Carmen, she forwarded me an email about last year's sparrow child and I just kept it in the back of my mind, and then found out that Alison Kilway was desperately looking for a new Sparrow Child in The Woodlands. Fate.
There is a chance they could need another Sparrow Child in The Woodlands this year. Please email me if you have an idea of a child who lives in The Woodlands kevinandlara@hotmail.com.
Proud mama moment - Elle scored 1 goal and had 2 assists today - way to go sportyspice!
Lara
Friday, September 26, 2008
Find out more about Hans, the new Sparrow Child and the upcoming Bunko fundraiser for the Weberlings at following website
http://www.yourhometown.com/sparrowclub.html
Love,
Carmen
Love,
Carmen
Great Day Houston guests Hans and Kev (link)
http://www.khou.com/greatday/medical/?nvid=286367&shu=1
Thursday, September 25, 2008
Hans and Kevin Featured on Local Talk Show this AM
This is kind of fun!
Hans and Kevin were asked by Elizabeth Garcia of the Gulf Coast Regional Blood Center to join her on the local talk show "Great Day Houston" with Deborah Duncan about the importance of giving blood on a year-round basis - it was pretty cute! I'm proud of my guys. We think it's important to help get the word out about this subject. We can't count how many transfusions Hans has had. (Chemo kills the fast-dividing cells, like hair, blood and tumor cells. That's why cancer patients need to receive transfusions so frequently during treatment.)
Check it out - Thursday, Sept. 25th 2008, www.greatdayhouston.com click on segment three. I'm not sure how long the website will keep it up - could be today only...
HAPPY 10th BIRTHDAY, ELLE!!! We're so proud of you, cutie!
Hans and Kevin were asked by Elizabeth Garcia of the Gulf Coast Regional Blood Center to join her on the local talk show "Great Day Houston" with Deborah Duncan about the importance of giving blood on a year-round basis - it was pretty cute! I'm proud of my guys. We think it's important to help get the word out about this subject. We can't count how many transfusions Hans has had. (Chemo kills the fast-dividing cells, like hair, blood and tumor cells. That's why cancer patients need to receive transfusions so frequently during treatment.)
Check it out - Thursday, Sept. 25th 2008, www.greatdayhouston.com click on segment three. I'm not sure how long the website will keep it up - could be today only...
HAPPY 10th BIRTHDAY, ELLE!!! We're so proud of you, cutie!
Wednesday, September 24, 2008
Photos
Kathy is right - it's hard to photograph jewelry. But the lanyards are turning out fun!
Tyson and Jim on roof over garage
Kevin, Tyson and Jim on Roof (Gregg and Mike were helping too - just not pictured here)
Hans with Bumblebee Lanyard
Elle with Lanyard
Hans With Mrs. Reedy - Glen Loch's school nurse, and the reason I'm not a nervous wreck for the three hours Hans is at school! She is wonderful, so is Mrs. Nusbaum!
Tree on House
Back in The Woodlands
Hi -
I thought we should post to let you all know we are back in The Woodlands. We had a very relaxing and nice time in Scottsdale. We just missed Kev! Thanks again to Mark and Debi for getting us out of here after IKE - at first we thought we'd be without power for weeks and that we may just stay in Scottsdale until we left for UCSF. At this time, I'm still not even sure if we are doing UCSF next week, or in three and half weeks - I need to get down to the bottom of that one soon!
We were working feverishly on our Lanyards! I will do my best to post some pictures of our tonight. Here is the ordering information: Email me at kevinandlara@hotmail.com and give me your address. We ask for a $15 minimum donation for the lanyard, plus $1 per lanyard to ship it to you. This is an excellent Christmas gift idea for your favorite nurse, doctor, or your child's teacher - anyone who needs to wear an ID badge!
Our cousin KK also approached two stores in Scottsdale and will be making Doggie Necklaces and keychains at The Barkery and Sonny and Chair, and Debi will be making Necklaces to sell at a Scottsdale restaurant - the HerbBox. They just got these ideas and they're going to be featured on a radio program! These ideas are taking off:) Proceeds will all be going to the Children's Neuroblastoma Cancer Foundation.
We had an awesome visit with our old friends, The Browns, who now live in Tuscon. Thanks for coming up to visit!
Still haven't heard from the insurance adjuster. We all can't wait until they make it out here. We still have some debris to clean out in the big beds out front and back - but the place is really pretty operational at this point...
Talk to you soon - I think there are some pretty exciting things cooked up for Hans on Thursday and Friday - but since nothing is set in stone at this point, I'm going to leave you hanging...
Lara
I thought we should post to let you all know we are back in The Woodlands. We had a very relaxing and nice time in Scottsdale. We just missed Kev! Thanks again to Mark and Debi for getting us out of here after IKE - at first we thought we'd be without power for weeks and that we may just stay in Scottsdale until we left for UCSF. At this time, I'm still not even sure if we are doing UCSF next week, or in three and half weeks - I need to get down to the bottom of that one soon!
We were working feverishly on our Lanyards! I will do my best to post some pictures of our tonight. Here is the ordering information: Email me at kevinandlara@hotmail.com and give me your address. We ask for a $15 minimum donation for the lanyard, plus $1 per lanyard to ship it to you. This is an excellent Christmas gift idea for your favorite nurse, doctor, or your child's teacher - anyone who needs to wear an ID badge!
Our cousin KK also approached two stores in Scottsdale and will be making Doggie Necklaces and keychains at The Barkery and Sonny and Chair, and Debi will be making Necklaces to sell at a Scottsdale restaurant - the HerbBox. They just got these ideas and they're going to be featured on a radio program! These ideas are taking off:) Proceeds will all be going to the Children's Neuroblastoma Cancer Foundation.
We had an awesome visit with our old friends, The Browns, who now live in Tuscon. Thanks for coming up to visit!
Still haven't heard from the insurance adjuster. We all can't wait until they make it out here. We still have some debris to clean out in the big beds out front and back - but the place is really pretty operational at this point...
Talk to you soon - I think there are some pretty exciting things cooked up for Hans on Thursday and Friday - but since nothing is set in stone at this point, I'm going to leave you hanging...
Lara
Friday, September 19, 2008
Counts looking good!
We had a very quick little trip to Phoenix Children's Hospital yesterday. Would you believe it was 45 minutes in and out the front doors and we had great counts in hand! HGB 11.7, Platelets 191, and ANC 5,000! We were glad to be here because we heard that the Texas Medical Center is pretty much out of blood. They are not giving out platelets unless people are bleeding!
THIS WOULD BE A VERY GOOD TIME TO DONATE BLOOD OR PLATELETS! Even if you haven't done it in a very long time. I'm a little worried about the other kids down there who might need transfusions. Check out the website www.giveblood.org if you are in the greater Houston area... If you are not in the area, you can find your local blood center and give, anyway;)
Hans is enjoying his trip. We are all having fun and being at least a little bit pampered. Lots of swimming, lots of playing Wii. Debi had been asked to bring Gabi, the new puppy, in for a photo shoot. We ended up having a little impromptu photo shoot of Hans, KK and Elle with and with out the doggie. I'll update with the photographer's website when he gets our photos up, so that you can check it out. But, I was able to post a couple of the photos today. Pretty good for just getting them yesterday!
Kevin is doing fine. We acutally got power back on at our house Wednesdat afternoon. He was able to return the favor and help another guy get a tree off his house, yesterday. Our block has been doing a few hurricane parties, so it's not all doom and gloom down there. He also said he got a very reasonable quote on getting the rest of the tree down. It was actually just the top 20 or 30 feet of a tree that landed on our house. The other 40 feet is still standing and we needed to get it down. I guess the guy is going to come out to the house today - amazing!
All we have left to do is figure out when to come home. That's a little tricky b/c we don't have our dates for UCSF nailed down yet. It's tentatively set for the week of Sept. 29th. We think the kids are going to be back in school Tuesday, so we'll see.
Thanks for checking up on us. Please keep Chloe Parker's family in your prayers. They are in truly unthinkable circumstances. Chloe's services are today and they still are operating without power at their house.
Lara
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