Lunch 4 Life - thanks

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

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

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!

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!

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

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

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

Memorial Bake Sale HUGE Success:$2,959 Total Raised for Research...($2,684 baked goods & $275 lanyards).Tune in for the next sale hopefully in Feb'09

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

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.

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