Make a Wish Trip Day 1

I have decided to take this amazing trip day by day in my  blog.  We didn't have internet at the Village so I didn't blog at all from Florida, I also borrowed my Mothers' camera and forgot a card reader!  We had an amazing time--a trip we will always remember.  I will admit that Michael and I bickered a bit, but we haven't spent that much time together in 8 months (or ever!) and I had to adjust to someone else making plans and schedules, usually all those decisions are mine and mine alone, oh well we came home holding hands so all is well!

Saturday Jax and I finished up his Chemo treatment and drove to Royal.  There we finished packing "plane" bags and I decided to switch everyones' suitcases (I don't know why Michael gets frustrated with me??!) to different ones.  We drove to Spokane, went to dinner and got everyone spic and span.  We tried to go to  bed early since we had to get up at 3:30 am to get us all to the airport on time.  When Michael and I know we have to be up early we promptly get insomnia--anyone else crazy like that?  So after a fitful night we went to the airport with our Make a Wish buttons on all of us.  It made me teary to see my kids with those buttons on---a reminder of why we get this wonderful gift I guess.  At the airport they gave Jackson a gift and we excitedly boarded the plane in Spokane and flew all the way to.......Seattle!  We had a lay over there and it was long enough to get the kiddos some breakfast.  We were hoping that the early morning and food would help them sleep the five plus hour flight to Orlando, but the plane was still so novel and cool that no one slept.  Zoe did manage a trip to the "cute baby bathrooms" on the plane about every 20 minutes or so, she loved those teeny tiny bathrooms, oh that I were so easily pleased.  We had a couple meet us at the airport with a sign bearing Jackson's name, I cried again.  I forgot to mention that in Seattle we met another make a wish family from Ephrata, the Mom's name was Becky and the Dad's Matt--go figure, Oh and there little girl has the same heart condition Maddie Allred has. It's a small world after all!  We got all 13 of us and our luggage to the rental car place and discovered a toyota camery had been reserved for our family of 7!  So a bit more waiting for us at the airport since no one from Make A Wish in Spokane could be reached on a Sunday afternoon.  We took a shuttle to the Give Kids the World Village and had our first sight of that delightful place.  They met us with gifts for each of the kids and took us in a "giant golf cart" to our Villa and completely won our kids over by those two things.  Our Villa (#182 if you were wondering) was 2 bedrooms 2 bathrooms and perfect for us.  Presents and treats were on our kitchen table and the fridge had sodas, water, and a chocolate cake for us as a welcome(chocolate cake is actually the perfect way to welcome guests!). We took the family to eat at the Gingerbread House (buffet style dining at the Village---anywhere we ate at the Village was free) and then I stayed with them while  Michael went to Orientation and got all of our park tickets.  I was surprised at how much we did in that first evening at the Village, had dinner, rode the Carousel numerous times, went to the La Ti Da Royal Spa for airbrused tattoo's and the girls got their nails polished. Went on the slide in the Castle of Dreams and had Ice-Cream at the Ice-Cream Parlor. All that in 2 hours.  We had a hard time getting the kids to settle down, but when they finally allowed their heads to hit the pillow they were out.  Day 1 is done, hopefull you will hear all about Day 2 tomorrow....but I have three beautiful nieces staying with me and little league games, and preschool so time will tell!! 

Dinner at the Gingerbread House.  Jackson discovered a love for Pink Lemonade on this trip.

Carter enjoying the Carousel at the Village.

Carter getting his "Cougar" tattoo.  He kept asking if Jesus was o.k. with him getting a tattoo!  I told him Jesus thought tattoos that wash off were o.k. for little kids---glad to know he is listening though!

The slide in the Castle of Dreams building.

The Gingerbread House is a big "restaurant" and the along the ceilings through out are dolls and stufed animals, thousands of them.

Jackson and his mad pig riding skills.

The seats outside the ice-cream parlour are shaped like sundae bowls and the building is designed so cute.

This is Rusty the Knight.  When you open the door to the Castle of Miracles Rusty says, "Welcome to the Castle".  Scared Carter to death, so he opted out of this daredevil photo shoot.

I wrote this blog Wednesday night, had loaded two more photos and the power went out---so this morning you get what you get and you don't throw a fit, cause I ain't got time to work on this one more little bit!

Perks of Cancer

Today while Jackson was being infused with drugs so toxic that the nurses have to gown and double glove to hook it up to the tubing, we got another perk.  Two tickets in a private suite to tonight's Mariner game!  They do this a lot at Children's.  We have been offered tickets to games and plays but never on a night we could go, well tonight we are footloose and fancy free (that little diddy of a saying was for Courtney's sake---she thinks I make these sayings up) and able to accept these great tickets.  We left early and were the first ones in the Suite.  We had all the popcorn and ice-cream we wanted and watched the Mariners get creamed (see the coordination between ice-cream and creamed?? I saw my friends interior design blog to day and have decided to turn over a new leaf and try coordinating things in my life!) 8 to 0.  And of course they had to lose to Uncle Trevors' Angels.  Is there no dignity left for us??  Jackson is still struggling with tummy issues so this was a nice way to distract his mind tonight.  When the man from the Moyer foundation welcomed us after he got to the suite I cried.  What is wrong with me?  I just thought it was so sweet to use the extra tickets for children from the hospital, and it means so much when people do things to make this experience less difficult for Jax.  I am afraid I will be dehydrated after our make a wish trip!

I took these last pictures to show Michael how I would like the lawn mowed this summer, it should look good--right?!

Chemo round 9 day 2

Jaxo noto feelo soo hotso todayo.  No worries though, he is being his usual amazing self, and just powering through.  I love seeing the way he can dig deep when needed.  Someday he will be married to a crazy postpartum woman and need this skill!  I took this picture of him last night with his two gallon size Ziploc's of medicines.  Grandpa Fred thinks we are amazing that we can keep track of it all, I just let him think that.  In reality though all of them have instructions written right on them! 

While he slept this afternoon I went adventuring.  Actually,  I just went to return some things to Costco and Walmart but it ended up feeling like an adventure.  I programmed trusty Lola (our GPS garmin thingy) to take me to Costco (the very first Costco, store number 01---exciting I know). Lola said it was 5.6 miles and would take 17 minutes, give or take an HOUR apparently!  There was something going on down towards the docks (I sound shady when I say I was down at the docks)today, and everywhere Lola wanted me to turn was blocked off by cones and cops.  So poor Lola was "recalculating" until she was hoarse.  I did see THOUSANDS (and I am not exaggerating like usual) of containers, You know those big ones off of trains and semi's.  They were being loaded by these huge orange thingys (I think that's the technical term) onto even HUGER ships.   I actually could have sat and watched that for a while but driving kept me pretty distracted so I couldn't really enjoy it!  When I finally finished those 2 errands  a whopping 3 hours had passed.  I woke Jackson up and forced him to eat, it was 3 pm and he hadn't eaten yet today.  He felt better so we went to the Burke Museum then to good ole McDonald's for dinner.  We are now tucked back into our hotel room and I am seriously considering a pedicure during "nap time" tomorrow!  Have a good night everyone.

This is how Jax spends his "wait" time at the hospital!

Dodging Bullets

Just because I always have a story about driving to Chemo I'll give you another one!  We left 3hours before our MRI appointment today.  If you remember our last MRI we waited in line at registration at the hospital for 20 minutes and they wanted to cancel our appointment, and we fought being late to appointments all day long until I felt like a criminal who deserved jail time.  Well i was determined to not be late for MRI today and thus we left in plenty of time.  We hit the 520 and promptly stopped, for about 40 minutes, we sat.  I later learned a car caught on fire on the bridge (word to all motorists stay off the roads when the Noftle's come to town, we are bad traffic luck!).  I called the hospital to tell them I was stuck in traffic and they started in on the "maybe we can squeeze you in next week" speech (for heavens sakes buy more MRI machines!! It's the hardest thing to schedule at this hospital).  I told them how far we were traveling and the Make a Wish trip and so on.  Finally traffic started moving and we ended up getting there about 15 minutes late, imagine if I wouldn't have given extra time.  But still they rushed us through and made me feel guilty (it's not hard to do even children can do it with ease!) again.  They had to access a vein for the MRI and so they said they would just draw his labs for Oncology and Endocrinology since he would have those appointments later today.  For the first time I got to go in with him for his MRI.  They gave me earplugs, I had NOOO idea how loud that machine was, something I never knew before.  Sounds like tons of fun, hold PERFECTLY still while we rack your brain with obnoxious sounds.  Then we went to get his port accessed (after getting his arm de-accessed!) and while he was doing that (new nurse was going soooo slowly bless her heart) I ran to check him into Endocrinology so that I wouldn't get the "your late" speech from them.  When I ran back for Jax he said they drew labs too.  Maybe because he didn't speak up!  When we finished with endocrinology we went to meet with a new oncologist since ours wasn't available today.  She came in and pulled up Jackson's labs on the computer and told us his ANC was only 419, he has to be 750 to get Chemo, plus yesterday he was 500.  I was so sad.  She tried to put a positive spin, go to Florida, relax come back for Chemo when you get home, and I am thinking, you have no idea how this complicates our life.  I asked for a copy of his labs and she printed them out, handed them to me and then just when I grabbed them she snatched them back and ripped them up.  They were another patients labs!  YIKES, so she got our labs up and discovered he had had them run twice today, once his ANC was 911 and once his ANC was 734.  Bounce around much?!  She let us go but showed me a graph of Jackson's ANC over the last 8 months.  At first it looked like mountain peaks, now it looks like a flatlining heart with barely a beat now and then!  His poor bone marrow is getting tired, she said she would be amazed if he could stay on schedule without any major delays while on cytarabine.  But we dodged that bullet to day, and we take it day by day most days!  We are packed for Florida and getting so excited, and I got to see my friend Elaine tonight, (her husband is "in town" for a stem cell transplant) we are only two miles apart here, closer than when we are at home!  Jax did notice that we forgot his Chemo blanket that Elaine made him, his first Chemo without it, I thought he looked "wrong" in his infusion chair without it.  If that's the only thing I forget to pack in the next 10 days I will be thrilled!

Give Kids the World Village Wish List

Several people have asked Michael and I if we need anything for our Make A Wish trip.  Michael discoverd on the GKTW web site that the Village has a wish list that keeps the Village "sparkling" (their words)  so if you are so inclined here is the list.  I am just going to copy it straight from the site, but remember we can't carry large items on our laps on the plane!  (The Village does take donations in cash too.)  If you want to purchase something for the Village or donate we are happy to take it with us this Saturday when we leave!

Help Give Kids The World keep costs down - and smiles up - by donating goods and services from our Wish List. Our list includes items needed for our daily gift-giving program, supplies for our Family Entertainment Program and items to help keep the Village sparkling.

To make a donation of any of the following items, or to help in any other way, please call 1-800-995-KIDS.

Support for our Gift Giving Program
•Batteries – AA, AAA, D (1,000 each)
•Disposable cameras

•Crayons – 8 pack

•Family Friendly Comic Books

•Small toys and games for children of all ages (with batteries)
•Teenage Gifts
•Coloring books
•Sunglasses for all ages
Support for Village Entertainment & Family Programs
•Balloons - Any type
•Balloons - Mylar
•Balloons - 12" Purple (75/week)
•Dress up clothes and costumes (for imaginative play)
•DVD-R (MINI - 30 minutes and/or 60 minutes) (550 per month)
•Movies (G or PG rated on DVD and Blu Ray Disc)
•Ping Pong Supplies
•Rain Ponchos
•Snack Items (single serving bags of chips, popcorn, cookies, and/or cheese crackers to be used for Family Gift Baskets)
•Wheelchairs (adult and child size)
Support for our Villas
•Ant & wasp spray
•Cleaning Tools (brooms, brushes, sponges, etc.)
•Floor lamps
•Foldable chairs with rolling caddy
•Sunscreen
•Vinyl/powdered gloves small, medium & large sizes
•60 gallon garbage bags
•Gloves (synthetic, non-latex)
•Landscaping Supplies - tools, rakes, shovels, wheelbarrows, sprayers, hand cutters, lined hanging baskets, etc.
•Pressure washers
•Treated Lumber
•Truck-mounted steam cleaner and van
•White Christmas Lights
•New Appliances:
◦Blenders (30)
◦Clock radios (60)
◦Coffee makers (60)
◦Dishwashers (30)
◦DVD Players
◦Microwaves (60)
◦Refrigerators (30)
◦Toasters (60)
◦TV's (19 or 27 inch)

High School Registration for .... (gulp) Jackson

I feel so old, I have a child (you remember Jackson the one who was an infant yesterday) going to HIGH SCHOOL in the fall.  HIGH SCHOOL, surely it will be better than I think, right?  You all remember how I felt about Middle School, I had nightmares that he would come home from the first day of sixth grade with a beer in one hand and a cigarette in the other.  But he didn't , he is still a sweet innocent boy.  But HIGH SCHOOL, how can any teenager safely navigate High School with their innocence intact?  High School also means just four years left with this boy in my home.  I feel like I am facing a ticking time bomb, and boy howdy time is 'awasting.  I need to go wake him up right now, teach him everything he needs to know about the gospel, then how to do laundry (without a red crayon going through a load---ruined probably $200.00 worth of clothes in that load, this week--I overload the washer it's a sin) and teach him how to balance a check book, (actually with the laundry and check book stuff we might need guest instructors)  I need to teach him about cleaning, cooking, shopping, social skills, girls, roommate's, scheduling, insurance, his medical history, driving, and whatever else I haven't taught him.  Yikes, I might really need to wake him up.  Then lets talk about his health, his future, his abilities, his prognosis---Nope let's not.

Kindergarten Registration, for.....(gulp) Carter

The night before Michael reminded Carter that "tomorrow he would signing up for Kindergarten", Carter said, "Oh crud, I need to learn to read".  He then brought me four books and demanded he learn right then.

Carter playing a math game with his future Principal, Mrs. Eilers, let's hope their interactions are always this friendly!

I couldn't even get emotional about my baby registering for Kindergarten, look at his face he is sooooo excited.I love how he sets his mouth when he is working hard.

Carter needs to learn how to act cool about it all from his buddy Detton!

These two aren't excited for next year at all--I could be wrong (it's happened once before!) but I don't think Cougar man will be a frequent flyer to the office like Sierra.