Success, Fiasco, and a great loss all in one day.
Success in the bake sale. We had ten full cafeteria tables full of yummy baked goods - sorry - I didn't manage to get a pic!
Success in the fact that many of our clinic and West Tower friends were able to pull themselves away from their hectic schedules to support the sale.
Success in that we sold about 30 lanyards.
We brought in almost $1900 for the CNCF.
Thanks to all the many NB and TCH mamas who came down to work the sale: Shannon, Charon, Mayada, Virginia, Sarah! Thanks to Mike and Athena for gathering up and delivering a carload of baked goods from their friends. Thanks to Tamiko, Michelle, Matilda, Carmen, Ginger, Dana, Lisa, Debbie, Ingrid, Dodie, Kim, Anne, Laura, Amy, Kay, for baking for us! As well as Charon and her friends, and Mayada and her friends. Please let me not have let anyone out!!!!
It's amazing to see all that good stuff lined up. Thanks again to Laura at Comfort Cookies.
Fiasco - let me tell you that Kevin and Hans were going to go it alone for a guys trip to Philadelphia for scans yesterday morning and the universe converged against this happening. I think I'm going to give the WHOLE story here, both so that I can remember the lessons learned, and so that I don't ever have to tell it - DRAMA!
First off - I must have turned off the alarm in a deep cycle of REM sleep that was set for 4:45. I was sure it was properly set - I triple checked it - yet, we failed to have a back up cell alarm set (Lesson one - set 2 alarms for an early flight!) (Lesson 2 - leave more time, duh?)
Kevin woke us up late, but we made it to the airport with 40-45 mins before take off.
With a light line, the guys would have been fine.
However, Hans instantly had to use the rest room.
Kevin made it all the way to the security checkpoint three terminals away (from Term C to Term E)
when he realized the machine hadn't spit out his boarding pass. (Lesson 3 - always triple check that you've got each boarding pass in hand, don't just walk away with what the machine spits out.... which was, in this case, Hans' boarding pass and a baggage claim ticket... One of the employees later told Kevin that the boarding passes get jammed in there all of the time.)
They tried to get him checked in at a nearby ticketing station, but he was locked off due to being too close to the time of departure. The lady tried to help, seeing little bald Hans there.
No one picked up the phone at the Ticketing Desk. The only option was to go on foot, three terminals back, to the check in, and get a boarding pass. But time ran out and the plane had to leave without them. They didn't make it on. However, Kev's big duffel did. So now, his favorite belt, toiletries, the PS2, as many Bionicles as Kev could cram in, a total of 44 lbs of winter dude gear is already up in Philadelphia. We have no idea how it'll make its way back to us. Normally, if it wasn't for the massive winter storm blowing in with about 19 inches expected to bury the Eastern Seaboard, they would have just hopped on the next flight. But, all flights were cancelled but a 12:30 flight - which the guys would have to either fly standby or upgrade to first class. I told them to use our miles to do this! But then, I called CHOP and we realized they'd just land too late. On that flight they wouldn't get to the hospital until 6pm and everyone from Nuc Med would be gone, so he wouldn't even be able to get the injection necessary to make Wednesday's scan readable. (Lesson 4 - I guess we need to give up on the idea of flying up on a Tuesday morning and back on a Weds night, we're going to have to go with flying in on Monday night! This puts us in tooo late to check into the RMH though!)
So, then, I had to get Elle home so she could make it off to school - she actually had an early appt/audition at school. I also had to load my entire car with baked goods and get to the sale. Insanity. I couldn't even pick up my guys stranded at the airport. Luckily, our friend/neighbor Mark was off that day and was able to go retrieve them! Thanks, Michelle and Mark for rescuing us, and saving us the cab fare!
Now what? TCH was unable to move the necessary mountains to get Hans on the schedule for an MIBG here this week. So, unless I get a call around 1 - 2 today that TCH had a no-show or a cancellation for an MIBG, we'll be going back to CHOP next week for the scan. The biggest part of this fiasco is that Hans can't start the med until he has another scan. Hard to swallow! We feel pretty culpable! But, the glass half-full part of my brain, is telling me that maybe they avoided a real unforeseen
disaster by not flying directly into the eye of the storm.
Great Loss - The world lost a great man yesterday. Erik Ludwinski battled NB once at the age of 6, then he relapsed thirteen years later, while in college. He beat it again, and it came back again. He has been fighting four years since his relapse. He and his mom, Donna, have provided great inspiration to all of us in the NB world. I've never personally met Donna nor Erik, but we heard Erik speak at the 2007 NB conference in chicago. He was awesome. I am once again struck very hard by the fact that the impact of loss of this one is incalculable. Donna has proivided me with both inspiration and direction through the ACOR listserv (our online parent support and information list). She was one of a handful of parents who took time to reach out and share experiences with me when Hans first relapsed in May of 2008. For her kindness and insight I am forever grateful.
I guess I better sign off and pick up this place. After a jam packed Monday and Tuesday - it sort of looks like WWIII around here!
- 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.