Make-A-Wish Trip - Day 2

October 27, 2009

7:30 am Eastern Time (4:30 am Pacific Time)

We woke up to that darn internal clock. Someone reset it to Eastern Time - how did that happen?

Dreary eyed, but excited for the day, we all started to get ready, and plan our day.

Our first stop: The Gingerbread House. We walked a short distance from our Villa to the the whimsical restaurant where everything is complimentary.

Breakfast was served by an army of volunteers, who even helped us take our tray to the table. The tables were decorated with real peppermint candy under the varnish. Alex and Tessa were just awe struck at all the great dolls and antique toys lining the whole place.

The food was good - they even had grits (one of my favorites)! After eating a large breakfast to steel us for the day of 90+ degree weather with high Floridian humidity, we all crammed into the Minivan, and took off for the Magic Kingdom.

Alex was so excited that when we pulled into the gate, he waved frantically to the giant Mickey and Minnie mouse statues.

Alex started looking around anxiously for the castle. All he saw was pavement. Miles of pavement. The journey to get to the Magic Kingdom was just beginning.

We parked the car, and piled out into the warm sunshine. We hopped on a tram, which took us to our two transportation choices for getting to the Magic Kingdom. Alex chose the paddle boat over the monorail for our first visit to Mickeys home. The view was fantastic, with the castle jutting out into the sky at the far end of the lake that separated us from the "Happiest Place on Earth".

Upon arriving at the ticket gate, Grandma Diana and Grandpa Bob's tickets didn't work, so Alex had to anxiously wait while the issues were resolved.

Finally, we entered the Magic Kingdom. I got a huge lump in my throat, when it hit me that we were here on Alex's Make-A-Wish trip, and that so many people worked so hard to get him there. His smile was huge, and the first words out of his mouth were "I want a Buzz Lightyear toy now, please!" You see, he had been wanting a Buzz toy for weeks, and we kept telling him that he would get it when we got to Disney World. Well, we were here, and he couldn't wait another minute!

After acquiring the beloved toy, we headed off to Fantasy Land, and Alex's first ride of the day. Eric and Alex sat down in the teacups, and the two of them didn't stop smiling the whole ride. As a Wish Child, Alex was able to ride without having to stand in line. I had to stop watching the two of them, since my stomach was experiencing sympathy nausea for Eric. Finally after three rides in a row, Eric convinced Alex to exit the Teacups. They both swayed a bit while walking to the next ride.

Ice cream was in order, and after polishing off a big vanilla cone, we were off to Dumbo. I rode with Alex, and Tessa rode with Eric.

Multiple rides on Dumbo later, we dizzily wandered off the ride, and headed for the Carousel. Are there any three more iconic Disney rides?

After the Disney trifecta, we headed to the Speedway. Alex was so excited to drive the cars. At 42" tall in bare feet, he qualified! Eric took Alex for his first ride, and I followed shortly thereafter. Tessa-Lynn hung out with the three Grandparents, while Alex earned his "drivers license".

We grabbed some lunch, and then went over to Tomorrowland. This turned out to be a great place for both Alex and Tessa. The Buzz Lightyear, Astro Orbiter, and the People Mover rides were all a treat. Eric was quite sad that Space Mountain was closed though - we are just going to have to return someday to ride!

After Tomorrowland, we walked over to Adventureland to visit Captain Jack Sparrow at the Pirates of the Caribbean ride. The kids eyes were wide as we floated through the scenes, with the notes of "Yo Ho, Yo Ho, A Pirate's Life For Me" dancing through our heads. A Jungle cruise later, we were on our way to Splash Mountain and Thunder Mountain Railroad. These were the two big rides we had been working up to all day.

Splash Mountain was next. Alex, Carol, Eric and I made our way past all the people in line to get on a log. Alex was fascinated with the story of Brer Rabbit as we gently floated along the ride. Alex and I were in the front, with Eric, Carol, and Buzz Lightyear directly behind us. I steeled myself for the big drop, and hugged Alex a little closer. As the log tipped over the edge, I looked at my little boy, and saw a HUGE grin from ear to ear. I blinked, and we were soaking wet at the bottom of the ride. Alex christened me "Wet Butt", while Buzz was "Wet Head". He took the name "Wet Shirt". Grandpa Bob was able to get a great picture of us barreling down the 50' drop.

With his confidence soaring, we decided to hit Big Thunder Mountain Railroad. Let's just say, Eric, Carol, Alex and I had a blast! After three exciting adventures on the roller coaster, we called it a night. We hitched a ride on the Walt Disney World railroad, and returned to the front of the park. The Monorail delivered us to the trams that dropped us off at our Minivan. We returned to Give Kids the World, a very tired, and grateful Wish family.

Dinner was served at the Gingerbread House and as usual, the food was great and the volunteers, amazing.

Right outside the Gingerbread House, is the Castle of Miracles, and the magical carousel. Tessa fell in LOVE with the zebra, and throughout our stay at GKTW, she would ask to go on whenever she could. Eric and Alex liked the giant roosters, and I usually ended up on the lion next to the zebra.

After a few twirls on the carousel, we wandered over to the Ice Cream Palace (which is open from 7:30 AM to 9:30 PM) and enjoyed some yummy desert. Alex enjoyed ordering anything he wanted, as much as he wanted, and adding sprinkles!

We then waddled back to our Villa only to find another gift for Alex and Tessa from the Gift Givers. Sleep came easy once our heads hit the pillows, and we all dreamed about the wonderful things we would experience the next day.

Our first day was amazing. I cannot find the words to do justice to our trip. This day was the first of many wonderful experiences that none of us will ever forget.

Next: Day 3 - Disney Hollywood Studios, Horseback Riding, and more fun at GKTW

Mommy...?

This morning, my son was helping me make breakfast. After globing 3 heart-attacks worth of butter on a slice of diet bread, he turned to me and said:

"Mommy....?"

"Yes hun?"

"I love you...and I love Daddy...we're a family!"

"I love you too sweetheart"

"I love Tessa, and you love Tessa, and Daddy loves Tessa!"

"Yes, we do"

"Daddy loves me, Daddy loves Tessa, and Daddy loves you!"

"And Tessa loves all of us too..."

Alex got down from his stool, and with the light of the refrigerator reflecting in his newly grown in hair, said:

"Mommy...?"

"Yes hun?"

"I don't love my cancer"

"I don't love it either"

"You know what we say to cancer?"

"What hun?"

"Go away cancer, go away...we don't want you here!"

"That's right honey - go away cancer, go away"

...as I try to wipe away the tears before Alex sees them, I whisper..."please?"

Make-A-Wish Trip - Day 1

October 26, 2009

3:00 AM

Eric and I rolled out of bed, and I stumbled into the shower. Not a second after the bathroom door clicked shut, Alex came bounding out of his room.

"We're going to Disney World!" he announced to the world. He had obviously slept about as much as we had. Eric and I joked that we were the people from this Disney commercial.

The limousine arrived at exactly 3:30. Alex helped load all of the luggage into our ride, and we headed to the airport. Now, I wish we had taken a picture of it, but I think we were all only semi-conscious at that point.

No car seats were required, and Alex *really* enjoyed riding "like a big boy", while Tessa-Lynn was buckled with me sitting on my lap.

I talked to my Mom and Bob on the phone once we were on our way - it turned out the only other car on the road at that time of the morning was their shuttle to the airport.

When we arrived, one of our wonderful Make-A-Wish Fairies was waiting for us. We got our luggage checked in, and managed to get through security with everything and everyone.

The plane was on time for a 6am departure, and with me between the kids, and Eric across the aisle, and two Grandparents behind us, we were off on Alex's trip!

The plane we were on had TV screens in each seat, and my brilliant husband brought a 3 way splitter for ear phones, which meant we only had to pay for one of the TV's (as long as we agreed on the show...).

The ride was pretty uneventful, until about 1/2 hour out of Houston, TX. The plane was hitting quite a bit of turbulence, and I started regretting not taking a Dramamine pill before we left. Alex was fine. Tessa, bless her heart, waited until she was buckled into her seat and we were starting our decent before she decided to upchuck about 16 ounces of full fat milk. GROSS - that's all I have to say about it. GROSS. Did you know that dry coffee grounds really help eliminate the smell? It works - trust me.

When we landed, we had only one hour before our next fight took off. We grabbed our stuff, put Tessa - clothed only in a diaper, in the stroller and headed for the next gate - halfway across the airport.

Now, I had prepared by having a change of clothes for Tessa in our diaper bag, which made it easy for Tessa to get changed all nice and pretty once we were in the airport. Her CARES seat belt harness, not so much. My mom and I spent a while trying to get it clean enough, and dry enough for the second leg of our flight.

After scrambling to get to the next gate, we were informed that it was going to be an hour late.

OK, not so bad...

Then, oops, now the flight is 2 hours late.

OK, not the end of the world...

Then, this airplane is grounded, we are shuffling you off to a new gate - back near where our first plane landed.

OK, at least they aren't putting us on an unsafe airplane...

Then, the plane was coming in from London, and needed to be refueled, cleaned, restocked, and checked before the next flight.

OK, at least we still have our seat assignments...

Then, with 10 minutes before we are to board: "everyone please approach the desk for new seat assignments"

OK, at least they will put us all together on this bigger plane...

Then, daughter Tessa is sitting in seat 9A, son Alex is sitting in seat 20B, Eric is sitting in 21C, Sara is sitting in 20F, and Grandma and Grandpa are separated as well.

OK, THAT'S IT! REALLY?!?!?!

The ticket agent tells Eric who is trying to explain that Tessa-Lynn and Alex are minors, and will NOT be sitting by themselves - "SIR, I did the best I could" - and actually dismissed him.

Then, it was time to board the plane. As we went down the ramp, I was just about in tears with frustration over this - our child is on his "Make-A-Wish" trip, and he won't even be sitting with us on the plane? Well, the people on board the plane must have been from the planet "we love our customers", because they sat us all together - to hell with the seat assignments.

After 3 hours of delays, we finally got ready to make it to Orlando. Eric's Mom, Carol was meeting us there, and we left her messages to alert her to our delay. Eric took the first shift with the kids, and I got to sit by myself. Sweet bliss - I looked at my phone as I turned it off, and noticed that we should be pulling away from the gate in about 5 minutes. Hmmm, the plane was only half full. That's OK, it was a much bigger plane. I think I'll close my eyes for a minute...

DING, DING: "Attention passengers, the maintenance crew has found a problem on the plane, and will need an hour to fix the issue. We have stopped boarding at this time. If the delay is longer, we will let you know."

ARE YOU KIDDING ME?!?!

Eric and I pondered unstrapping Alex and Tessa and letting them run wild in the fuselage out of spite for our predicament. Our love of our fellow man, and the fact that we would be stuck in a tin can with these people for hours showed us the light. The kids stayed put.

The hour slowly passed and finally a trickle and then a flood of people entered the airplane. Not a single seat was empty by take off.

The flight itself was uneventful, until Tessa decided that she wanted to improve upon her performance on the way to Houston. She blew out her diaper about halfway through the flight. At this point, I only had a change of clothes for Alex. So Tessa changed into her brothers pajama top, and his jeans.

We arrived in Orlando at 8:30 at night (5:30pm Pacific Time), and were met by a nice woman from Give Kids The World, and Carol, who had been waiting for hours! We got luggage carts, and headed down to baggage claim. We were traveling with another Wish Family from Oregon, who was also staying at Give Kids The World. We were all exhausted, and ready to begin our adventures.

AVIS upgraded us to a Mini Van, and the grandparents rented a car. We drove to Give Kids The World, and entered a wonderland.

Our first stop was the House of Hearts. We were greeted by warm volunteers, who gave Alex a big Mickey Mouse doll, and Tessa-Lynn a Shamu the Whale doll. Paperwork was minimal, and were were shuttled to our Villa. The picture below was taken once we finally arrived at around 9:30pm (6:30pm Pacific Time).

Give Kids The World was aware of our delay, and had dinner delivered to our Villa soon after we arrived. The food was great, and the Villa was charming. There was a big basket of gifts for Alex and Tessa on the coffee table, and Alex did not wait to tear into it. It was the first of daily "gifts" left by the Gift Givers that roam Give Kids The World (GKTW)

As we were getting ready for bed, Grandma Diana noticed that Grandpa Bob's suitcase was full of golf shoes. Perplexed, she had Bob look over his bag, and determined that OOPS! It wasn't his bag. After taking a few minutes to decipher how to dial out, and what Continental Airline number to call, we were informed that Bob's bag was still at the airport. Eric and Bob took a drive back to the airport to retrieve his bag.

Once we were all back together at the Villa, we all tried to get some sleep, knowing in the morning, Alex's Wish really started to come true. Eric and I slept in one room with the kids, and Grandma Diana and Grandpa Bob slept in the other bedroom. Grandma Carol slept in the living room on the pull out couch (which she decided not to pull out).

Next: Day 2 - Disney's Magic Kingdom, and the wonders of Give Kids The World.

A Return To The "New Normal" - Oh, And Steroids...

Yesterday, we started back with the first "New Normal" week in over a month. We had a Chemo appointment in the morning (ANC = 1,100 - right on target), where he received his Vincristine, and we got the go-ahead for Steroids, and full dose Methotrexate and Mercaptapurine.

The afternoon brought school - a great day to be sure!

After school, I went to pick up my new glasses, and realized at 4:30, that we were out of Prednisone, the steroid Alex was due to start at 6:30pm - ACK~!~

I hastily called Eric, and put him on the case to get the prescription transferred from Doerenbecher to the Walgreens down the street. Of course, with it being a Monday, both pharmacies were absolutely overloaded with customers, and we didn't even get confirmation that the prescription had been transferred until 6pm.

After a fabulous Salmon dinner prepared by Eric, I rushed down to the pharmacy, and retrieved the dreaded steroids. When I say dreaded, I don't mean by Alex - he is taking *all* his medicine like a champ with the applesauce - such a difference from a year ago! I mean, dreaded by me and Eric. The personality changes are quite dramatic - and not in a good way...

It is only 5 days - we can get through it - right?!?!

A Return To School

Finally!

Alex was able to return to school yesterday for the first time in almost 4 weeks. He is officially "not contagious"! The rash is no where to be seen on his sister Tessa-Lynn too!

He missed his friends so much. It was so nice to see him play, and return to some sort of normal routine.

This has been a hard week. Yesterday was so hard. Alex was pushing limits, and acting defiant. I think he just reached his breaking point. I feel like I did too.

Today is a new day, and while it isn't a school day, at least both Alex and I can look forward to Monday, when he gets to go back to school again.

Warriors 4 Alex

Down in Loyalton, California we have a group of Warriors 4 Alex who gathered together to collect 52 units of blood in Alex's honor. The blood drive was such a success, that they ended up having to actually turn away a few people. The response from the community was overwhelming!

Thank you Grammie Gale for putting together the Blood Drive. Thank you, Warriors for coming out in record numbers to support a little boy that most of you have never met. You are each a Hero to us!

We are honored that Alex has touched your lives in a way that pulls a community together to do good things. Since each pint of blood can be used for up to 3 people, this blood drive may help save well over 100 lives!

One Year Ago Today...

It's 4:03 pm.

This time, one year ago, I was waiting for a call back from our Pediatrician's office. I had been calling since 8am about Alex's chest X-ray from the night before.

At 4:15, Eric walked in the door. At 4:20, the doctor called, and told us to go to Doerenbecher to get a CT scan. My heart started racing as it plummeted into my stomach. I knew that Alex's Thymus Gland was enlarged. I was hoping that it was just a mistake.

You see, I had spent the previous 24 hours researching an "enlarged thymus" - there is NOTHING good about an enlarged thymus. Everything pointed to cancer. I couldn't wrap my head around the possibility.

By 5:30, my mom was watching Tessa-Lynn while we proceeded to get *completely* lost on the way to the hospital. We finally found our way, and entered the emergency room at around 6:30. Alex didn't really understand what was happening. Eric and I were scared out of our minds.

Alex was so brave when they gave him his IV, and was so scared when we went to get the CT scan and X-ray.

After the procedures, it only took a few minutes for the doctors to come in the room and give us the news: Alex had either Leukemia or Lymphoma - he would be admitted to the hospital tonight, and we would meet with the Oncologists in the morning.

All the oxygen left the room.

Eric collapsed in his chair. I was sitting with Alex and started crying. Alex, not knowing what those words meant, reached over, and wiped the tears that were running silently down my cheek.

My very first thought was: "It was too good to last". I hate that I thought that - I hate that my initial reaction was to give up. It was the first and only time I did.

The doctors were so compassionate while showing us the X-ray. Even my untrained eyes could see that the mass had grown considerably in only 24 hours.

My heart had traveled from my stomach to my throat as we walked the halls to the Pediatric Intensive Care Unit. I have never seen so many wires. Alex had a heart monitor, an oxygen monitor, and had an IV line.

That night, we met with the Oncology team - it was now midnight. The rest of that night/morning was a blur. There were lots of tears, and lots of calls to loved ones.

For those of you who are new to this Blog, you can find out more about those first few days by reading the November 2008 Blog entries.

We are one year closer to being cured. We are one year closer to normalcy. We are one year closer to leaving this world of cancer behind us.

We love you Alex - more than you will ever know.

Good News / Bad News

Saturday night, Alex started to complain that his mouth hurt. By Sunday night, he was hardly eating. Monday morning, he was still hurting, and I could see a sore on his tongue. I called the doctor, and they asked us to come in today for counts and get his mouth checked out.

I was worried that it was Thrush. Alex was on so many antibiotics, that it seemed probable that the flora in his mouth just went crazy.

Alex was NOT happy to go to the doctor. He cried, he pouted, he relented, and we went.

The GOOD NEWS: Alex's ANC was 1,400 - yes! He got to start oral Chemo again (although at 1/2 dose). We will get counts again next Monday to see if we can go up to full dose Chemo.

The BAD NEWS: Alex's mouth sores were the beginning of Hand Foot and Mouth Disease. Click HERE for more info about the virus. The doctors think that he got it again (he had it when he was about 18 months old) because his counts were so low last week. Alex was so crushed when we told him he couldn't go to school. He has missed three weeks already. He misses his friends - and now, he is quarantined at home for the week.

Now we wait for Tessa to get it :(

At least he didn't get this while on his Make-A-Wish trip. He would have been quarantined to his villa at Give Kids the World instead of enjoying himself.

I promise to write about our trip this week.

Home...

We are home.

Alex woke up yesterday morning and said "Mommy, I want to go back to Give Kids The World". My response? "Me too honey, me too...".

It was a magical trip, and a magical place. I will expand on our trip in a future blog post.

For now, Alex was seen at the clinic here in Portland, and his counts were not yet recovered (ANC = 650), so we are still off oral chemo until Tuesday, when his counts will be checked again.

We hope to return to a "normal" life and schedule next week.

But for now, we are basking in the afterglow of an AMAZING trip, and an experience none of us will soon forget.

Getting Released

Eric just called. Alex is definitely getting released today!

His ANC is about 250 - which is at least trending up. He will be released with TamiFlu and Antibiotics for the remainder of the trip. Alex's Hemoglobin (Red Blood Cells) is low, but not quite low enough to transfuse, so we need to keep our eyes on him for the next few days. If he gets lethargic, he may need to go back to the clinic for a transfusion. It takes 4 hours, but would at least be "outpatient".

I'm just grateful that Alex will be able to come back to Give Kids The World and enjoy all the amazing things!

I think a trip to the ice cream shop is in order!

Trick Or Treat!

Alex was able to escape the hospital for a few hours last night, and got to Trick Or Treat at the Magic Kingdom. The event had been sold out for months, but Disney got us in, since Alex was hospitalized on the night we were supposed to go.

It was great. Disney even gave Alex a remote control car that he had his eyes on since Tuesday. Unfortunately, Micky forgot the batteries (9 volt), and no one had them in the park (except at the very front of main street). Alex was distraught for a while, but after eating some dinner, and getting on his costume, he got excited about the night.

He enjoyed the Haunted Mansion, and It's a Small World, and LOVED the Buzz Lightyear ride. Eric and Alex were in the rocket ships high above Tomorrow Land when the fireworks went off. It was very cool!

Tessa finally fell asleep at 10pm in the stroller. She was adorable in her Minnie Mouse costume, and Alex was so excited to be in his Clone Trooper costume (Star Wars). We had ups and downs all night. One moment Alex was happy, then next, pouting - but it is to be expected that he would regress emotionally during this time.

He was ripped from Disney, and Give Kids the World, and thrown into a strange hospital, and confined to his room - it stinks. I think I would have thrown a tantrum too.

Alex had to go back to the hospital last night with Eric, but it sounds like he will be released pretty soon. Eric is nagging the nurses - trying to move the hospital along.

Grandma Diana and Grandpa Bob are returning to Oregon tonight, and Grandma Carol will stay with us for the remainder of our Wish.

We hope Alex will be released from the hospital in time to say "good-bye" to Grandma Diana and Grandpa Bob - cross your fingers!

More about the trip later!