In October 2008, 3 year old Lily was diagnosed with 2 types of Cancer. In 2012 her mom was diagnosed with 2 types of cancer. Here are the current updates on Lily's family, their tumors, treatment and living with Li Fraumeni Syndrome.
Monday, September 28, 2009
Medically Speaking....
I have gotten the kids caught up in school, (not too tough considering of the 10 school days they missed- they only missed 5 days of school) celebrated Phillip's birthday and planned my first homeschool preschool lesson. One of my neighbors, a friend and I have decided to attempt our own little co-op of preschool once a week. We alternate weeks. I decided to throw Bella into the mix so I get 2 days a month. Not seemingly a big deal. On the cusp of what I refer to as standard Hawaii School Board idiocy- I am feeling fairly animositastic towards the school system. You can tell my level of annoyance by number of words I make up. You get what you pay for and unfortunately for students in Hawaii- that's 3.5 days a week of school. The teachers have been furloughed for most Fridays to meet the budget. Great plan. How bout we furlough teacher meeting wednesdays? Time to triage. How bout we furlough all the school related BS that's not directly related to providing children this thing called an education? Hard to plan the swim forward when you don't have the strength to tread water.
I have already come to terms with the fact that I have to supplement my children's education at home if I hope for their education to meet my expectations. It's that or get a really good job to put 4 in private education. But I'm a proponent of- if you want it done right- do it yourself. I don't want it done right enough that I undertake ALL of their education. That's sheer insanity. Plus, With a rare exception, the kids have been lucky with their teachers- which allows my to overlook the administrative corpses that stink up the building. The Hawaii School board birthed a mentally and physically challenged school system and left it in the corner to drool while teachers, parents, and students gently sneak it food and hugs- trying to keep it alive. I think many schools across the nation face the same treatment.
As is the nature of the world. There are those who chose to turn their back on the child, saying it is a substandard specimen. Instead they purchase an education, because they have the resources- or find the resources by sacrificing other luxuries. Like everything, education is a luxury paid for by the desire to learn. You can accept a handout, but you must realize- it will not be a 2 or even 3 course meal. There are those who accept what is given and are grateful for even that, aware than in many places a mere slice of bread is considered a hearty meal. Some bring a little meat, others share their cheese and before you know it- the meal has been transformed. It may not be a Monte Cristo- but that really is just a sandwhich soaked in fat and fried. You feed that to the child in the corner, and it will get sick. Some don't have the money to buy meat or cheese, but offer to take the time to feed the child, that time is all they can spare. Those providing the meat and cheese are grateful, for they don't have that time to spare. It takes a village. Sometimes access to the child is blocked or becomes difficult. It is during these times that is we work together for what is right- the child isn't left to starve in the corner because it's parents are self centered fools.
Along the same lines we have this healthcare hubbaloopitydoo. I don't know enough to spew a nicely thought out metaphor, analogy or opinion. So I won't. I will say though, that I have been asked by 2 different departments within the hospital to speak with their residents about how to treat patients and what patient expectations are. I have said before- general care within the military realm is mediocre. Once you get into the specialized care circle- it's a whole different world. If you don't like conveyor belt health care- I suggest you get really diagnostically ill- generally a life threatening but not terminal condition and you will get the best care. Triage. If you do something insane like bruise your pancreas- you will see a constant flow of specialists and curious onlookers - which will provide you the audience who can diagnose the underlying problems. Don't think that universal healthcare will be any different. You want to pack up and go see the BEST- that's fine, but you will be paying for it-privately. You want to try your luck with Dr. Schmo - who is perfectly qualified and way over tasked- you will be just fine- but don't expect that extra warm feely because he just won't have the time. There will be up sides. But the grass is ALWAYS greener. That won't change. Until a little more common sense prevails...there will be BIG problems. You can't have everything and pay for nothing. If you get everything and paid nothing- it was given by someone else who makes the rules. You either follow their rules or make your own money to buy your own stuff and then you get to make the rules. Kinda like being a parent. You can teach a child to fish- but as long as they are fishing in your pond- it's your fish. You can give them all the fish they catch- but then why would they bother to go fish anywhere else? Ahhh welfare.
I don't know the answers. I don't think any one thing will fix these problems. I don't thing that any one thing is THE solution. You definitley can NOT please everyone. I don't know how many old adages I can squeak in. I do know that some of the greatest minds are trying to work it out, even if it means that nothing is getting done. I do know that if the current system isn't working, it's better to try and find something that will work. If at first you don't succeed...right?
Tuesday, September 22, 2009
Happy Birthday Phillip!
Monday, September 21, 2009
The Wild Side of Disney
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It's Notazoo! You can ride a safari- coast to the top of everest and do nature treks, Disney style! Again the weather was not on our side when we were at Animal Kingdom- but we didn't let it slow us down. We decided the rain pelting your face on the Everest Roller Coaster added a cool realism to the ride. The best thing to do when it rains at disney- is go with it and consider it one of their 4D effects. Plus a lot of the crowd clears out and it actually is cooler.
We got to visit with a lot of our favorite characters including Lilo and Stitch. We didn't know how big of a Stitch fan Bella was until she started hugging him and wouldn't let go. We have often said she is stitch in her own right- but when he took her hand to take her to get an iced coffee- we knew they were 2 peas in a kukui nut pod. Of course we stopped their escape, but it was funny none the less.
Sunday, September 20, 2009
Just Keep Swimming....
There was a great kiddie ride area. I liked that all the lil rides were clustered so one of us could hang out with the girls while the other took Phillip to ride the big rides. It was a good day.
The down side was that I couldn't eat the entire day- the plus side was that there was a Chick Fila on the way back- AND it was date night at GKTW(which they call Kids' Night Out) so Phil and I snuck out for Olive Garden. It all worked out swimmingly.
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Saturday, September 19, 2009
Yo Ho! Yo Ho! A Pirate's Life for US!
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In honor of Talk like a Pirate Day! Arrrrrrrgh!
Treasure Abound! Shiverin our Timbers at the Pirate's ride and Party at Give Kids the World. Logged a lot of time at the Pirates of the Caribbean Gift shop- go figure!
Friday, September 18, 2009
POOH Corner!
The second visit was at Epcot in a store in Great Britain. The Beatles began playing outside and the girls got to dance with Pooh and friends!
Most days we either had Big Pooh or Baby Pooh with us. They got plenty of hugs and kisses from characters we met along the way. The best was- and you know I've been dying to say this...Mater ate Pooh!
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Universal Fun.
How so they enjoy green eggs and ham.
To Universal they went, to find the Cat.
And there they found him with his giant Hat.
And Sam, 2 things, the Grinch, and the whole fish set.
Don't ride One Fish Two fish, unless you want to get wet.
A Seussian Carousel, went round and round.
And then onto a train, high above ground.
Oh the places we went, oh the things that we saw.
Over to to see spidey, who enforces the law.
Wolverine, Captain America and Cyclops stood near.
Phillip rode the hulk roller coaster without fear.
Through a park, of the Jurassic kind.
We flew like pteradactyls, up in the sky.
A great dinosaur roar, made Bella's feet race.
Mom had to chase her across great space.
A chat with Donkey and Shrek.
So many places to trek.
Curious George and the man dressed in yellow.
Turned out to be a quite nice fellow .
Scooby dooby doo and his pal Shaggy.
And visiting with the Simpson family-especially Maggie.
Oh the places we will go, Oh the things that we will see.
We had so much fun, Universally.
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Wednesday, September 16, 2009
The Princess Diaries
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Our first full day in Florida, we went to the Magic Kingdom. We no more than get into the park, and it starts pouring. Not Hawaiian kine- wait three seconds and it will pass, but good old Florida downpour with no end in sight. We take advantage of the sheltered lines and ride the important rides- Peter Pan's flight, Pooh, It's a Small World and then we head towards Toontown where I know there is a tent with characters. There used to be 2 lines- one led to a room with the princesses, the other friends from Pooh corner. We finally make it to the tent. No strollers are allowed inside and it is literally raining sideways. We stow the ponchos and completely cover the stroller with another and Phil makes the dash out to the "stroller parking". I notice that one line is for the princesses, the other is for Tinker Bell and the Fairies. The wait listed is 70 minutes. Ugh. The line attendant sees Lily's Make a Wish button and ushers us through. We walk right into a circular room with three satin draped areas of different colors. Cinderella waltzes up to Lily and says " What took you so long? I've been waiting for you!" and leads her over to her special nook. At this point I am still dripping from the rain and can wipe the tears away without notice. The kids are all visiting with different princesses- there is no way I can capture it all. I stick with Lily who is chatting Cinderella's ears off like they are old friends. One of the cast members is quietly instructing Phil on how the visit will go, where we will go after to see more characters and giving him this photo pass which is a credit card thing that photographers all across the World scan after taking pictures and put all of our "professional" pictures into the system that we can look at at our convenience- Brilliant. A machine I tell you. I notice Phil has that look he gets when the Broncos are on and I try to talk to him. It really is a different World at Disney. Some people don't get it. We are Disney people. I think Phil is vying for his turn with Cinderella. I'd bother feeling jealous if my emotions hadn't already been maxed out- but let's face it I wanted a turn with Cinderella. The cast member has ushered out all the other guests and is gathering the princesses together. He turns to Lily and says- we have a special treat for you. She climbs up on Cinderella's lap one of the photographers snatches my cameras because like I said, this doesn't happen, it's a magical place and I got a little verklempt. Then the other kids all get a turn and then all 4 with the 3 princesses.
After our visit, we are guided into Tinker Bell's forest with her friends Fawn and Silver Mist. The wait to see her is over 70 minutes long and we are taken right in the back door. It's a strange feeling. It's wonderful not having to wait. I hate waiting in line. And mostly when I saw the wait time I figured we'd see the princesses and skip the Fairies because it was just too long. And I guess that is the point of the Access Pass, because they know many of us practical parents would skip the wait and move on to something else so they don't want the wish kids to miss out. Plus as a good friend put it- we spent our time waiting in the hospital- it balances out.
Bella loves Belle, but until then I had no idea how much she loved Tinker Bell. As the kids are hugging and chatting with her, Bella is practically vibrating. She is doing the hoppy dance she does when she is excited. Finally she spots an opening and grabs onto Tinker Bell's leg like it was a life raft. Very cute.
We did the princess breakfast experience. Usually Snow white is tough to find, but with the dvd being released in October, she's everywhere. We also got to see Ariel with her land legs, and the same Cinderella we met with on our first day. She remembered Lily and was incredibly sweet. Phil and I had much discussion over how they choose the princesses. Cinderella is the Alpha princess as Phil calls her. The PIC(princess in charge), he was amazed how the other princesses would step back for her. They are generally beautiful, but we did see one Ariel and one Alice that gave us the shivers but then they had the perfect voice and mannerisms so I guess it works out. Except for pictures- because you just don't hear the perfect voice in the picture. The only "princess" we didn't see was Mulan and we scoured China at Epcot doing the Kim Possible experience mission thing.
Tuesday, September 15, 2009
Giving Kids the World
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During WWII, Henri, a small child and his family were imprisoned in concentration camps such as Auschwitz. Only he and his sister survived. He spent years starved and maltreated. He finally escaped and immigrated to New York after the war ,where he began working in hotels. He ended up managing the Starlite Hotel, becoming friends with Apollo astronauts and through a series of lucky encounters, made a comfortable life and embodied the spirit of the American Dream. Henri always helped less fortunate souls, having been helped numerous times himself during dire circumstances.
In the 80's. Henri Landwirth was woring in a hotel in Florida when he heard the tragic story of a little girl named Amy who died while waiting for a room to open up for her Make A Wish trip to Disney World. He gathered donations from his friends and partners and vowed not to let this happen again. Give Kids the World was born.
Families who stay at Give Kids the World are fed generously because Henri remembered the horrors of being starved. Travel arrangements are made, all creature comforts are provided so the family can focus on having fun. Tickets to local theme parks are generously donated. On site there are multiple options for food an entertainment. Everything is kid sized and decorated for pint sized amusement. A huge carousel sits under a mushroom cap, attached to a Castle of Miracles. Inside the castle, there is a salon for girls to get manicures and make overs, boys can get tattoos or face painting. A magical well grants wishes and each wish child who passes through writes their name on a star that will shimmer on the ceiling for all future visitors.
Each night a different theme is celebrated with the village mascots, the Mayor and Miss Mary. There is a birthday bash, Christmas party, Pirates and Princesses night, Parent's night out and Village Idol. There is an ice cream parlor open all day. There is a theatre, complete with popcorn, ICEEs and treats. The Amberville Train station has not only a kiddie train, but a miniature electric train city with endless buttons to push. There are rides, arcade games, pool, and bumper boats. There is a mini golf course, a pool, and a stable with horses. Henri's only wish is that families have the time of their life and no strings attached. A major corporation offered a million dollar donation but wanted a plaque in each guest villa. Henri said no. No strings attached. He didn't want recognition or publicity. The Village is staffed, cleaned, maintained by volunteers.
I had not ever heard of Henri Landwirth or Give Kids the World, and that was purposeful. Major corporations and small contributors do so anonymously. That is the spirit of giving. Families like ours are not asked to repay anything. Not that we could, the gift was priceless. Watching Lily write her name on the sparkly little star and putting it in a special box for the Star Fairy who hangs it on the ceiling of the castle while we slept. Knowing that there were so many before her, who wrote their names on their stars that twinkled above our heads. Knowing that many of them lost their battles, yet their memory shines on. They all leave their mark.
Like Disney, Give Kids the World is a well oiled machine. Run by the dedication of good people who spend their time helping others. Phil and I agreed that when we are able, someday we'll go back and volunteer. On another note, every year I see the thermostat thingy ma doodle at the gate to base with the words "Combined Federal Campaign" on it. Never really gave it much thought as I was trying to get through to the commissary with screaming toddlers. I asked Phil what it was about and he told me it was a charitable donation program. Since we donate to other causes, we usually don't contribute. I figured it had to do with base programs and such and wasn't really sure where the money went, but it is so much more. I know that the next time the sign is up, we will be helping out because the Combine federal campaign sponsored our Make A Wish trip. So if there are those out there like us, who weren't sure where the money goes and hesitated to donate...don't. It truly does make a difference. If there are those out there who have contributed, thank you.
Back from Never Never Land....
Saturday, September 5, 2009
Oh bother!
We have been to magic kingdom, universal studios and animal kingdom. we,ve visited with some of lily,s favorite friends including pooh! We had a very special visit with Cinderella, belle, and aurora. I got a little verklempt and one of the cast members had to take my camera lest I take blurry pictures. Every night here at the village there is a special event, tonight is a huge birthday party. We are exhausted from the fun, which is a much better feeling than the alternative!
We don't have internet in the house here, so when I get a chance I will download pics or instruct Phil to! He's been up at 5 every morning checking on work. He has been chastized and now claims he is checking up on fantasy football. I apparently got Ocho cinco and mcnabb. Chiiiile please. I might as well kiss the baby now.
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