Christmas At Home

Whew, we made it through Christmas without any fevers! Alex has a nasty sounding cough, but no fever - let's keep it that way!

Tired Boy

Alex is *so* excited about Christmas - he has been jumping, running, full of energy all day. He just ran out of steam this evening, and fell asleep at the dinner table at 6:30. I hope that it is just regular exhaustion, and not the beginnings of a battle against infection with his body. His counts are still low enough, that a fever would most likely end us back in the hospital for a few days.

Santa, all I want for Christmas is to spend it with my family AT HOME. Please?

Make-A-Wish Trip - Day 5

Friday, October 30, 2009

I woke up in the hospital, and started posting stuff online, to let everyone know we had derailed on Alex's trip. This is the first post: Make-A-Wish Trip & A Bump In The Road

A little while later, I talked to my mom, and she told me that Make-A-Wish and Give Kids the World were trying to extend our stay. Words cannot express how grateful I was that Alex would get to finish his Wish trip.

I notice I am using the word grateful a lot in these blog postings. I looked at the Thesaurus to see if I could mix it up a bit, but no other word really worked. Give Kids the World heard that Alex was in the hospital, and told *us* that we would be staying longer. It was not something we asked for - I couldn't imagine even asking, after all that they had done for us. So yes, grateful is the best word.

A few hours later, I got the call from Make-A-Wish that our flights were rescheduled, and our rental car extended. The tears were warm on my cheek, as I tried to thank these amazing organizations for their support of our family.

Here are a couple posts that I did that day:

Give Kids The World & Make-A-Wish

A Pile of Candy & Giggles

It's OK To Cry

Our nurses were dressed as Thing 1 and Thing 2 from Dr. Seuss' "The Cat In the Hat", complete with green/blue wigs. I think Alex was a little confused - they don't make nurses like that in Portland!

Next: Day 6 - A Six Hour Pass

Make-A-Wish Trip - Day 4

Thursday October 29, 2009

We woke up on Thursday very excited to see Mickey Mouse and friends. They visit GKTW on Thursday mornings, and we wanted to make sure we saw them!

All of us headed down to the Gingerbread house for breakfast, and then wandered over to Julie's Safari Theater to meet the Big Mouse himself.

As we got closer, both Alex and Tessa started getting really excited! Pluto, Goofy, and Belle were outside the theater. Tessa was ecstatic, and Alex was thrilled to meet them all!

Then, we went inside to meet the Main Mouse, and his sweet-heart. Mickey and Minnie were on stage, and after a few minutes wait, we got to go up and say "Hi". Honestly, I just about lost it. Tears were welling up in my eyes, as I looked at Alex give Mickey a great big hug. This was the essence of the Wish.

After our "meet and greet", we went back to the Villa to get ready for the day. Of course, we had to pass the Carousel on the way so, of course Tessa and Alex had to take a spin or two, or three.

The weather was predicted to be in the 90's again, as we gathered our stuff to go to Universal Studios. It was HOT, really HOT. Alex was grumpy, and I think all of us were getting tired, and we hadn't even made it to the park yet.

We went on a few attractions at Universal. We were able watch Shrek 4D (fun, but gross at times!). Everyone went on the Jimmy Neutron simulator (I held Tessa on my lap on the non-moving seats). Watching the Grandparents, Alex and Eric on that ride is a highlight of the trip for me!

Universal Studios is definitely geared towards older kids, and there wasn't much that Tessa could go on. The three Grandparents watched Tessa while trying to find shade, as Alex, Eric and I went on the Simpson's ride. It's a simulator, and I ended up missing the last 5 minutes, since I had to squeeze my eyes shut tight to keep from throwing up all over Alex.

After the ride (which Alex and Eric loved), we went to get some lunch. Alex was sitting in a stroller, and started to really act out. He wasn't behaving at all, and hardly touched any of his lunch. I felt his forehead, and then touched Tessa's. They felt the same - hot. I felt Eric's too, and it was hot. I just chalked up the behavior to the excitement, and heat of the day.

After we ate, we wandered a bit around the park, but Alex just wasn't interested in doing anything. We managed to get him on one roller coaster, but after that, he was done. So, we decided to head back towards the Magic Kingdom. This was the night we had tickets for "Mickey's Not So Scary Halloween Party". We were excited to have the kids dress up, and trick-or-treat in the park. Alex fell asleep in the stroller on the way out of Universal Studios, and slept all the way to Magic Kingdom. I was grateful that he got some sleep, and hopeful that it would improve his mood.

We got Tessa-Lynn dressed into her ADORABLE Minnie Mouse costume in the car. She kept saying "pretty, pretty!". Alex had no intention of getting on his costume until we were in the park.

Once we got in the park, Alex was still acting tired. We decided to just push him in the stroller for a while, and let him rest. We tried to go on a few rides, but all in all, Alex's energy level was so low, that we decided to head into an air conditioned restaurant to cool off. The problem was that while all of the rest of us cooled off, Alex did not. He stayed flush, as the rest of us returned to normal. I started getting a sinking feeling in my stomach as I realized he was now hot to the touch, and the rest of us were not. We all headed to the First Aid Station to get his temperature taken. I kept telling myself that Alex's counts were probably great. He had been off of *all* medication for a week now, so even if we went in for some IV fluids and antibiotics, he wouldn't need to get admitted - right?

Unfortunately, the thermometer read 102, so we went into the Disney Wish Lounge right next to the First Aid Station, and made a call to Doerenbecher. It was 6pm in Florida, so only 3pm in Portland. The advise nurse told me what I didn't want to hear. Alex needed to be seen at an emergency room.

We had our guide book from Give Kids the World, and it listed nearby hospitals. We chose one that had an ER, and that "fed" into Arnold Palmer Children's Hospital in Orlando, in case Alex would need to be admitted. We figured that this was a little detour, and that all would be OK after some fluids and maybe some antibiotics. I hoped it was just exhaustion and heat that caused this fever spike.

As we were leaving the Magic Kingdom before we got to go to any Halloween activities, I stopped by the customer service desk to see if we could get a refund on the "Not So Scary Halloween Party", since it hadn't even stated yet. Disney came through for this Wish family. They gave us tickets to the Oct 31st party, which had been sold out for months. And, if we couldn't make that night, we could get a refund then.

We crossed our fingers as we left that Alex would be able to come back, and finish his Wish.

We dropped the Grandparents and Tessa-Lynn off at GKTW, and headed for the Emergency Department. We used a big band-aid to put over Alex's Port to hold the numbing cream on, and made our way to the hospital. When we got there, we explained what was going on, and that our son was going through cancer treatment, and had a fever, and could be neutropenic (low white blood cell count). They said "OK", and stuck us in the regular waiting room with all the sick people. We really are spoiled here in Portland. When Alex goes in the ED, they whisk him away to a clean room *immediately* to reduce the risk of infection in his delicate state. Here in Orlando, at this hospital, Alex was just a number. After what felt like an eternity, we were called in, and put in a room. After another eternity, a nurse came in and wanted to access Alex's Port. By this time, the numbing cream had been on Alex's skin for a few hours. Either he was numb to his toes, or it had worn off. I hoped it was the former.

I asked for some adhesive remover to help take off the band-aid. The nurse said that they didn't have any. So, I started gently peeling the band-aid off of Alex. It was slow going, and he was obviously in pain (so much for being numb all over). I decided that it would be better if I just pulled it off fast. As I did it, I remembered that Alex's skin is so sensitive in that spot; it had been taped up repeatedly over the past 11 months, but it was too late. I heard him cry out, and then I saw blood. I had actually ripped off some of his skin with the band-aid. I just cried with him, and told him how sorry I was. He was such a trooper about it. I felt like crap. All three of us were exhausted by this point. The nurse used a "huge" needle on Alex (thankfully, the numbing cream still worked). It took WELL over an hour for them to get Alex's counts back. By this time, it was after 9pm at night, and we still didn't know what was going on. I called my mom, and told her we would call when we knew something. I doubt any of the Grandparents could sleep at that point.

Finally, a doctor came in to save us from another hour of horribly acted Disney TV. Unfortunately, his news wasn't good. Alex's counts were only ninety-eight, yep 98. They would have to transport Alex in an ambulance to Arnold Palmer Children's Hospital. So, we waited, and waited, until the ambulance arrived. Then, Eric and I watched our son get strapped down on a gurney, and rolled out to the ambulance. I rode with Alex, while Eric followed behind.

I NEVER EVER wanted to ride in an ambulance with my son. He was exhausted, and fell asleep on the way. It was now about midnight, and exhaustion was making the tears easier to breach my eyes.

When we arrived, we lost Eric in the parking lot as Alex and I headed up to Pediatric Oncology. Once we got there, I told the night nurse that I was *really* unhappy with the way Alex's Port was dressed in the ED. She shook her head and said "tsk, tsk, tsk", as she gently cleaned and redressed Alex's Port. I was grateful for her tenderness. Eric showed up a few minutes later, and it was decided that I would sleep there that night, and Eric would head back to GKTW, to return in the morning.

I hardly remember putting sheets on the roll-away bed, or even putting my head on the pillow. I DO remember my heart shattering in pieces thinking about how unfair all of this was. Alex wouldn't get to finish his Wish - he was cheated out of another opportunity to just be a kid. I silently cried myself to sleep, listening to the quiet breathing of my sweet, sweet boy...

NEXT: Day 5, a day at the hospital.

Another Counts Check

Today, we went back up to the clinic to get Alex's counts checked again. They stayed level at 600 - which is lower than they want, but not low enough to change his dosage. So, we stay the course for 3 more weeks, until his next Chemo appointment in January.

We need to just be really careful that he doesn't get sick and a fever, or he has a very good chance of getting admitted.

Only 4 more days until Christmas - we can do it!

Think Healthy Thoughts!

Make-A-Wish Trip - Day 3

Wednesday, October 28, 2009

We woke up to another beautiful, and HOT day at Give Kids The World. Today, Grandma Diana and Grandpa Bob were staying at GKTW with Tessa-Lynn while Eric, Alex, Grandma Carol and I went to Disney Hollywood Studios.

After another yummy breakfast at the Gingerbread House, we walked over to "Keaton's Corral", where gentle horses were giving rides to all the children. Alex didn't want to go on the horses, but Tessa was just about jumping out of her shoes trying to get to the "Zebra"!

The volunteers were so sweet, and gave Tessa-Lynn and Alex cowboy hats. After watching the horses and donkeys for a few minutes, we headed back to the Villa so we could get ready for our next adventure. Alex, Carol, Eric and I loaded in the mini-van, while Grandma Diana and Grandpa Bob pushed Tessa in the stroller over to the Carousel.

First stop at Hollywood Studios was "Star Tours" - Alex LOVED the simulator ride, and got his orange Star Wars Blaster. After acquiring his Rebel Alliance weapon, we went over to the Jedi academy training center. Alex was a bit overwhelmed, and decided just to watch the other kids battle Darth Vader. He was fascinated!

Next, we went to the Indiana Jones show. Alex has never seen the movies, so it was fun to see his eyes get big as the giant bolder came barreling down on Indie. As a Wish child, we got front row seats. Alex had his blaster ready, and was ready to assist Indiana Jones fight off the bad guys if he was needed. The fire and explosions were quite impressive from the front row, and the dry heat rolling off the set was actually a welcome change from the humid, HUMID, Florida weather.

We ate lunch, and went on the studio back lot tour. On our way there, we ran into Lightning McQueen, and Mater from the movie Cars. The line for a picture was long, but again, as a Wish family, we went to the front of the line. I saw one father scowl at us, and it was all I could do not to walk up to him afterwards, and explain that childhood cancer was the cost of admission, and that the price was too high...

We were getting exhausted at this point. Alex fell asleep on the back lot tour, and after it was over, we found a corner in an air conditioned restaurant, and Alex and I napped, while Grandma Carol and Eric just rested.

We then hit "The Tower of Terror" ride - which is a free-fall ride. Alex LOVED it - he thought it was great! Here is a video of the ride for those who want to see what it its... Click here. He was smiling ear to ear the whole ride, and having the time of his life!

After a final run with Star Tours, we headed back to GKTW. Alex had a date with some dinosaurs at Mark's Dino Put-Put after dinner. Universal Studios built the 9 hole course for GKTW, and it is one of the best miniature golf courses I have ever seen. At each hole, the dinosaurs move, spray water, growl, and fascinate the kids (and grown ups too!).

After a great game, we headed to the ice cream parlor for some great dessert. We all enjoyed swapping stories about our day.

We headed back to the Villa, and eventually fell asleep. Alex was in good spirits, and we had no idea his body was starting to battle an infection, that would land him in the hospital in just 24 hours.

Next - Day 4 Universal Studios, and the Hospital

Chemo Exhaustion

Alex's counts are low, and the effects of his heavy doses of Chemo, including steroids, are showing.

He fell asleep at the dinner table tonight at 5:30 - he is still asleep. We have to wake him up in a few minutes to give him his evening Chemo before putting him to bed for the night.

He had a great day at school - and no sign of a fever - but this round of Chemo each month wipes him out.

Since yesterday morning, he has had:

9 steroid pills

5 1/2 Methotrexate pills

IV Vincristine

2 1/2 Mercaptapurine pills

2 Previcid pills

1 dose Zofran

I hope he has the energy for school, and to fight off any possible illnesses. He's been coughing a bit today...

Chemo Appointment

Yesterday, Alex had his regular monthly Chemo appointment. He did great, as always *smile*.

His counts were another story. His ANC was only 600 - gulp. That means that if he gets a fever, we have a very good chance of landing in the hospital.

The doctor told me it was my call whether to even bring Alex to school. What seems like an easy choice, "don't bring him" - gets more complicated when you realize that this is the last week of school before a two week break, and that he was already out of school for almost 4 weeks last month.

So, Eric and I decided that Alex will go to school this week, but if we see any sign of illness from Alex or anyone else, we are pulling him out.

We would hate to spend Christmas in the hospital. So, we are using hand-sanitizer every few minutes - if Alex escapes this cancer without becoming OCD about hand washing, I'll be amazed. (only half-joking...)

The doctors are nervous enough about his counts that they want to re-check on Monday to see what direction they are headed. If they are still under 750, they will halt his oral chemo for a week, and then re-assess the dosage.

It's not easy to figure out dosages for kids who are constantly growing and changing. Alex has shot up over 2 1/2 inches in the last 3 months - I'm sure his normal body chemistry is not easy to navigate with the added chaos of Chemo.

Counts Check

Alex had a quick appointment at the clinic yesterday to check his counts, since he so recently returned to full strength chemo.

The nurse accessed his Port, and drew the blood. She then flushed and locked the Port with Heparin, and de-accessed. Alex was his usual brave boy, and he told the nurse what the next step was through the whole process.

Good news. His ANC was 1,700 - slightly higher than they want (750-1,500), but good enough for the next two weeks.

Luck would have it, that the clinic received 100 - yep a whopping 100 - H1N1 shots last Friday. Unfortunately, Alex cannot get the booster short for one more week. Then, he can't get it because he is within a week of steroids, so it will be AT LEAST 3 more weeks before he can get his booster shot - and in all likelihood, the clinic will be out of them by then. Ugh - this H1N1 flu season has been a fiasco for those who really need it. Oh, but that is another post, and a different rant :-)

In the clinic we met a woman who's 6 1/2 year old was getting her very last back poke. The girl was diagnosed with a similar cancer when she was 4 - and was within weeks of saying good-bye to cancer treatment forever. I cannot put into words the joy I saw on this mom's face as she said "take care" to us, and walked her daughter back to the procedure room. I can't wait to walk in there for the last time!

We only have 16 1/2 months of treatment left. That is only 67 more Saturdays before we say "take this Port and shove it, cancer!"

I just can't wait!

Alex is back at school - and loving every minute of it - I'm so glad he is getting to be a "regular" kid so far during these holidays.

We are thankful for so many people and organizations this year who have worked so hard to save my son, and enrich his life since cancer reared it's ugly head. Thank you, thank you, thank you!

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!

A 6 Hour Pass

The doctors are giving Alex a 6 hour pass from the hospital to go trick-or-treating at the Magic Kingdom tonight.

We are so excited that he gets to experience this part of his wish! His doctor here was really excited for him too.

We are bummed that Alex has to come back to the hospital to be observed overnight, but we expect him to be released tomorrow, to finish his wish at Give Kids The World, as long as he doesn't spike another fever.

The Grandparents took Tessa-Lynn to Sea World today, and they say she is really enjoying it. We'll go again with Alex on Monday or Tuesday - I can't wait to see their faces!

Alex's platelets were low, but started rising today, so no transfusion necessary (whew). We haven't heard what his ANC is yet - but we anticipate that it is rising...(we hope!).

It's OK To Cry

Yesterday was not as bad as I thought it would be - for staying in a room the size of a one car garage at the hospital.

Alex giggled with Eric, carved virtual pumpkins on the computer, and watched WAY to much TV. At dinner time, Eric headed back to Give Kids The World to hang out with Tessa and the Grandparents, while I stayed here with Alex.

Everything was great - Alex ate a good bit of his dinner, and had some early Halloween candy for dessert.

Then, it was time for bed.

Alex tried so hard not to cry. His eyes were wet, and his face was red, and he could barely speak. He looked at me with such soulful eyes and said "We aren't going home?" I said "Not tonight honey - but hopefully tomorrow - we'll see what the doctors tell us in the morning".

He rolled away from me, and said "I just want to go home", and started crying. I felt so helpless. This is all so unfair - I'm so angry that my sweet boy is having to deal with this. He tries so hard to be brave.

A little earlier in the evening, Alex heard another little kid crying down the hall. He told me "Someone is crying. It's OK to cry. Sometimes, you just have to cry, and it's OK".

I reminded myself of that, as I turned off the lights, and listened to the sound of his tears, while trying to stop the flow of mine.

A Pile Of Candy & Giggles

I went downstairs here at the hospital to get something to eat. The whole lobby is full of trick-or-treater's, and hospital workers dressed up in costumes. It broke my heart that Alex couldn't participate, due to his low counts (he is quarantined in his room).

A few minutes after I returned to the room, a ChildLife specialist came in with a huge bag of candy and toys for Alex. A little bit later, Candlelighters brought MORE toys, candy, and cookies on a stick.

Alex is currently sitting in a pile of candy and toys on his bed, and playing with a "sticky hand" with Eric (it keeps getting stuck to the ceiling - hmmmm...I wonder how that happened?). Alex and Eric are giggling away, having some fun and normalcy.

Alex is so resilient - I learn so much from him every day!

Give Kids The World & Make-A-Wish

Give Kids The World and Make-A-Wish are extending our stay until November 4th. Hopefully Alex will get out of the hospital on Sunday morning, and we can continue with his Wish for a few more days.

Words cannot express how much we appreciate what these amazing organizations are doing for us!

Make-A-Wish Trip & A Bump In The Road

We have been having a wonderful time here in Florida - even with the humidity and heat (90 degree weather - and high humidity in October - really?!?!?!).

I'll write more about our adventures when we return.

In the meantime, I wanted to let everyone know that Alex spiked a fever, and was admitted to the Arnold Palmer Hospital for Children last night (well, early this morning...). We'll be staying for at least 48 hours - but hope to have him well enough to get a 6 hour pass to go Trick-Or-Treating tomorrow night at Disney World.

Tessa-Lynn is in good hands with 3 of her Grandparents, enjoying all the wonderful things to do at Give Kids The World.

In fact, Give Kids The World is working with Make-A-Wish to extend our stay for a few days, so that Alex can experience his whole wish. These groups are truly amazing - and we will be forever grateful for their support of our family through this ordeal.

Alex has a small spot on his lungs, which the doctors are concerned might be the beginnings of pneumonia, so they are treating him with heavy antibiotics. They are also starting him on Tamiflu as a precaution.

He was admitted because his ANC was only 98 last night. This morning it is up to 119, which is trending in the right direction at least. His fever spiked at 103.4 last night, but has been normal since about 2am.

I'll update more as I find out new information.

Thank you for all your support of our sweet boy - we really feel it right now.

Make-A-Wish Thank You Party

On Sunday, Make-A-Wish, and our amazing "Wish Fairies", threw a party for our family and friends who have supported us through this first year of cancer treatment.

First, let me say that our Wish Fairies are amazing! We had the party at the new Tigard Fire Station, and Firemen and Policemen were there along with our friends and family.

Alex was a little shy at first, but did truly enjoy riding in the fire-truck around the neighborhood, and getting to spray the hose!

We are so excited for our trip - we just need to make sure we stay healthy between now and then!

Thank you again to everyone who has helped us make it through this last year.

Flu Mist Update

I received a call from Doerenbecher today, updating their policy on the Flu Mist.

Due to the shortage of flu shots, and the prevalence of Flu Mist, both Doerenbecher and Emanuel Hospitals have been forced to alter their guidelines for their pediatric cancer patients. Alex can now go to school even when Flu Mist has been used.

I have been given additional instructions to keep Alex out of the classroom if his blood counts drop to a certain level.

It seems that there was a lot of confusion and frustration by some of the parents as to what was being asked of them. I never wanted their children to go unvaccinated. I just needed to know if they did the Mist so I could take the appropriate precautions for my child.

Having a child with cancer is the most terrifying ordeal I have ever encountered. We have a long road to recovery – 18 more months of daily Chemotherapy.

Thank you, and I express my deep appreciation for helping keep Alex safe. With all of the chaos that cancer has brought to our life, the simple act of going to school has been a huge chunk of normalcy back to his life.

No School...

One of Alex's preschool friends got the H1N1 Flu Mist last Thursday, which means that Alex shouldn't attend school this week.

We got a call at the last minute on Monday, saying that child was not attending that day, so I rushed Alex to school, to enjoy some time with his friends.

But that was the last time this week. We had some playtime with some of his friends on Tuesday, and today, we visited with more friends this afternoon. Tomorrow, we'll again try to distract Alex from missing school.

This cold and flu season is just getting started, and I'm already exhausted...

A Sea of Balloons

Friday night, our family and friends all donned their Warriors 4 Alex T-shirts and headed for downtown Portland. The Leukemia & Lymphoma Societies Light the Night Walk events were scheduled to start at 6pm, with the walk at 7:30.

Alex carried a white balloon as a survivor, while all his supporters carried red balloons. Eric carried a gold balloon in memory of Dawson, a young boy who lost his battle with Leukemia recently.

The balloons were illuminated with flashing lights, and the view of all of them walking along the waterfront and crossing the bridges in Portland was a sight to behold.

Alex had AMAZING energy that night. Playing, and running like it was the middle of the day, and not past his bedtime.

Half of us walked the short route, and half walked the long route. Somehow, we ended up as the *very* last team to finish the walk. But we finished it.

What a great night. We Are Warriors 4 Alex - we will win this battle!

Alex's Make-A-Wish TV Appearance!

Make-A-Wish

Today, Alex will be interviewed by our local TV station at 4:45 pm (KATU - channel 2), to help promote Make-A-Wish Miles for Smiles campaign.

The Make-A-Wish Foundation is asking for donated airline miles. Seventy-five percent of all wishes start with "I wish to go to...". These airline miles help make our children's wishes come true.

We are flying to Disney World for Alex's Make-A-Wish later this month. We know that this was made possible by the generous donations of people just like you.

If you cannot watch our interview live, please consider clicking HERE to donate any unused airline miles to Make-A-Wish.

Alex talks about his upcoming trip so often, I am so excited for him, and so grateful for Make-A-Wish for making it happen!

What A Difference A Day Makes

Alex woke up this morning in a great mood - we had a great day hanging around the house, with a quick trip to Home Depot.

What a difference a day makes. He didn't need any Zofran, had no GI tract issues, and ate quite a bit.

I hope the next few weeks are quiet, and relatively uneventful!

"I Don't Have Enough Blood..."

Today, we ventured to OMSI - Alex was in a much better mood, and with the last dose of steroids behind us for another month, I was in a better mood too.

After a few hours of running around, we grabbed some lunch, and headed for home. While both kids fell asleep on the way back, Alex woke back up as we were carrying him back into the house. He rested on the couch while Tessa-Lynn napped.

Once his sister was awake, Alex, Tessa, and Eric went outside to play basketball while I cooked dinner. While Eric went to get the balls out of the garage, Alex just sat down on the little wall. Eric walked over and asked him what was the matter. Alex said "I don't have enough blood to throw the ball".

A little while later, Eric was able to convince Alex to play a little baseball in the court.

He ate very little for dinner, requesting more Zofran, and went to bed without a fight.

I don't have anything else to say right now...

A Crazy Day In Alex's House

Tomorrow is the last dose of steroids for the month. I can't wait.

Today was so hard. In the morning, Alex was just all over the place. He was happy, sad, mad, angry, hurt, playful, sincere, selfish, joyful, loving, distraught, delighted - all in the span of a few hours. I did my best to juggle his emotional turmoil, while his younger sister fed off of the emotions, and was a wreck herself!

Alex wanted to go to OMSI. In his state, there was no way I was going to take him and Tessa-Lynn there by myself. He lost it - crying, hysterics, pouting, you get the picture.

After a bunch of deep breaths, and after giving myself a 5 minute timeout away from the kids (Eric worked from home today, and watched them for me). I was able to hold back my tears, and proceed with my plan of distraction.

I told Alex that we would go to the store to get gingerbread cookie mix, and then come home, and make Halloween decorations and make the cookies.

It worked for a while - Alex and I happily cut up paper and taped googly eyes and pipe-cleaner, donning the house in festive "boo" fashion, while Tessa took her nap.

After cooking the gingerbread men, Eric took Alex to the store. When they returned with dinner, Alex stated he needed Zofran. We obliged, and noticed Alex took a total of two bites of his dinner. A few minutes later, he was sitting on Eric's lap, and fell asleep. We gave him a 1/2 hour nap, and when he woke up he started running to the bathroom. He was in and out of there at least 10 times before bed. He didn't resist his medicine, and went to bed easily. A few minutes later, Eric heard Alex calling for me. Eric walked in and rocked with him for a few minutes. Alex was complaining that his tummy hurt (we think it's his lower intestines/bowels). We are keeping our ears open for him, and hope that he can get a good night sleep.

Since this cycle will repeat the week we go to Disney World for our Make-A-Wish, we have a call into his Oncologist to see if they have any stronger nausea/digestion medication we can give him so he is comfortable during his Wish. I'll let you know what I find out as soon as I know.

School

Alex woke up from his impromptu nap, and was ready for school. I spent the first 30 minutes of class cleaning the toys in the classroom with the help of a good friend. The reason? One of the kids in another class got the flu mist, which spreads live vaccine everywhere the child goes. Normal healthy individuals can fight off the weakened virus, but in immuno-compromised children, the virus can take hold, and could ultimately take a life.

Since Alex cannot get the flu shot for another 2 1/2 weeks, he is especially vulnerable.

But I digress....

Alex did great for about half the class - then, his tummy started hurting, and the tears started flowing. The rest of the class time was spent with Alex on my lap, holding my hand, or clinging to my leg.

The wave of nausea has subsided for now, and Alex actually ate some dinner (along with another dose of Zofran). He is outside with Eric and Tessa-Lynn working on a giant string spider web around our oak tree...

Sleeping

For those of you who don't know our son personally, let me explain that he is a ball of energy with legs, arms, and a head. He loves to play, and run around.

Right now, and for the past hour, he has been asleep on the couch. He is so tired. These monthly chemo rounds just drain him.

Today, his school will be making traps to catch those sneaky gingerbread men that escaped from the school kitchen on Monday. Eric and Alex even devised a trap last night, that Alex was going to show teacher Susie at school today. He was so excited! Now, he is sleeping on the couch, and I'm not sure he'll have the energy to go to school...

I hate you, cancer!

Appetite

Alex essentially had nothing to eat yesterday. Everything was sitting in his stomach all day, and then decided to take the road less traveled to leave his body.

Alex felt better after the elimination of everything in his stomach, but went to bed with nothing but water in his tummy.

He woke up this morning very hungry - he's already eaten a bowl of cheerios, some oatmeal, and is now working on some applesauce. Unfortunately, the chemo is still reeking havoc on his stomach, so while he is so hungry because of the steroids, the food is just not digesting as well as it should because of the chemo.

You may ask - "Why are you giving him so much to eat then"? My response - "Have you ever tried to stop a steroid induced eating machine"? All I can do, is give him his Previcid and Zofran, and hope that he can keep his food down...

Chemo Effects

Alex's breakfast and lunch decided to make a repeat performance this evening in our truck. This chemo is so hard on his poor body - and we still have 18 months to go...

Steroid Week - Ugh

We have already gone from happy, to rage, to giggly, to sad, to angry, to thoughtful, to happy, to rage...etc. You get the point. 1 day down 4 to go.

Clinic and Heartache

Alex had his monthly chemo appointment today. He was such a trooper when the nurse accessed his PORT. He is now comfortable enough with the process to ask for everything he needs. "I want the iodine instead of the stinky sponge" (used to clean his skin before accessing the PORT). "Please tape up the tubie" (to keep it from hanging down and getting in the way when he goes to the bathroom). I'm so proud of him! His blood counts were good - no transfusion necessary, and his ANC was at 1000 - right in the middle of where they want it (between 750 and 1500).

After Alex received his Vincristine, and was de-accessed, we headed down to the cafeteria to eat taco salad. Alex has decided that's what he wants every time we go to the hospital. I'm happy to oblige...

On the way home, Alex was talking about school, and how excited he was to go. The timing couldn't have been more perfect. School starts at 1pm, and we got off the freeway at 12:45, so we headed directly to school.

Alex ran down the hallway, so excited to play outside with his friends. I gave him a kiss good-bye, and watched him go outside. As I was talking to his teacher, the door opened, and my son - with eyes full of tears, came walking up to me "I need Zofran - my tummy hurts!". I just held him tight, and told him I would go home and get it. He decided to come with me, so we left the school long enough to come home, and get the medicine to calm his achy tummy. After packing Tessa-Lynn into the car (thanks mom for watching her while we went to clinic!), we headed back to school.

Alex asked me to stay for a few minutes, which made Tessa-Lynn so happy to play on the playground. Then, the tears really started. He said he wanted to just go home. But he didn't. He talked about school all weekend. He talked about school the whole time we were in the clinic. He just didn't feel good. With all the poison running through his body, it's amazing he can even get out of bed in the morning.

He cried as I sat there holding him in my lap. A few of his classmates came over to see what was wrong. To be honest, I was crying too. My boy was hurting, and there isn't anything I can do about it, except continue to give him the medicine that makes him feel so bad.

After about an hour of calming him down, I was able sneak away with Tessa-Lynn, and let him enjoy his class. When I came back, his teacher said that he got teary two other times that afternoon, but really enjoyed himself.

My heart just aches for everything Alex is going through. He has such a strong spirit, and he fights so hard against this cancer - it's exhausting for him, and for his family.

Eric's Words

I'm sure all of you have figured out that I'm the one who writes the blog entries. I have asked Eric if he wanted to contribute, and he always turns me down.

Today, I was copied on an email where Eric was asked to write a quick paragraph on Alex's life outside his battle with cancer.

This is what Eric wrote:

"Alexander is an incredibly playful four year old. On his first day of pre-school this year the first words in the morning were 'I get to go to school today!'. He couldn't wait to get out on the playground with his friends.

He does not watch tv shows, he plays tv shows. Right now he especially likes the Dukes of Hazzard. Every chase scene, jump and car wreck in reproduced, with extreme attention to detail, using hot wheel cars on our living room table.

He loves to do 'space turns' on anything he can. At the end of the movie Space Balls the flying Winnebago spaceship does a 180 casting off stars like rocks on a gravel road. Alex first started doing his 'space turns' on a tricycle. He would get it going as fast as he could and then turn hard swinging the back end around and stopping. Then he graduated to using his battery powered Jeep. One day we asked him to put it away in the garage forgetting that the garage doors were closed. He immediately started down our rather steep driveway going faster and faster heading directly for the closed doors. We were screaming at him 'Stop! Stop!'. He didn't listen, he knew what he was doing. At the very last second he pulled the wheel hard to the left swinging the back end around and stopping inches from the door. He looked back at us with a huge grin on his face and expression that said 'what, you didn't know I was going to do that'?"

Do you see why I love my husband so much? What a great description of Alex - our wonderful 4 year old boy!

Too Close To Home

Eric came home on Monday, and told me that a friend's nephew had died from complications of Leukemia over the weekend. The complications began with a simple cold that turned into pneumonia, and his poor little body couldn't fight it off. There were tears in Eric's eyes, and a quiver in his voice as he told me the sad news. While Eric had never met this sweet child, the idea that cancer had robbed this poor boy and his family of his future had hit too close to home.

Our hearts ache for this family, and we can't help but think how easily this could be our story. This battle against blood cancer is fierce, and we cannot let our guard down. We also must remember the casualties of this war, and hope that our battle is successful. Not just for Alex, but for all children with cancer.

Light the Night

As we approach the one year anniversary of Alex's diagnosis, we have so many people and organizations to thank for the support we have received throughout this ordeal. One of those organizations is the Leukemia & Lymphoma Society. They have been working tirelessly to help families like ours fight this vile disease. Twenty-five years ago, Lymphomas like Alex's were just about a death sentence - only 20% of children and their families were saved from the agony of a senseless and painful death. But now, with research funding provided by the Leukemia & Lymphoma Society, the tables have turned. Over 80% of children diagnosed today with T-Cell Lymphoma and many other blood cancers are cured. Not just for 5 years, but forever.

We are hopeful that our son will be part of that 80%. However, that still means 2 out of every 10 children die.

That is unacceptable.

Because you have given us so much support over the past year, and your concern for our family is so greatly appreciated, we now come to you to ask for your support of the organization that has helped our family, and so many others.

The Leukemia & Lymphoma Society (LLS) has a fundraiser every year called "Light the Night". Our family and friends have joined as a team with a goal of raising money for LLS to aid in the research to end the deaths from blood cancer. We would love to see Alex's generation as the last to loose children to blood cancers.

We know times are tough, and money is hard to part with. We wouldn't be asking if we didn't feel as strongly about this as we do. Every dollar helps.

Please click the link, and donate to LLS - we thank you with all our hearts.

http://pages.lightthenight.org/or/PortlndL09/sarawilkison

Nausea

Now that we are in the maintenance phase of Chemo, we know exactly what drugs he will be on for the next 18 months AND they are really messing with his whole GI tract. Eric and I just rushed downstairs 15 minutes ago because Alex was crying. When we walked into the room, the odor of vomit was so strong, Eric had to leave the room.

I guess we will just have to rely on good-old Zofran to combat the nausea for the next year and a half - there is no "getting use to this" - poor guy. My heart just breaks again and again with everything he is going through.

As I stroked his head while he was falling asleep in new PJ's and sheets, I told him "I'm so sorry honey". He said "It's alright mom, it's alright..." My strong boy is giving me comfort while he is going through so much.

I just love him so much...

Alex - a face of childhood cancer

Alex's picture is on page 52 of the new National Childhood Cancer Directory Resource, the Kid's Cancer Pages!

He is also now the "thank you" face for the American Red Cross here in the Pacific Northwest!

School

Alex is back at school!

This was the first week, and he was exhausted. The combination of afternoon school, no nap, and his daily chemo is quite tiring. Yesterday, he actually fell asleep in the car on the way home from school (which is just 1 mile from our house).

We are trying an earlier bed-time to combat the exhaustion. I hope it works...

Twilight Zone

This week is a steroid week. I actually fooled myself into thinking "this week isn't too bad..."

I was wrong.

Today, in the middle of Fred Meyer, my normally decently behaved 4 year old decided that "I NEVER GET ANY TOYS...never, Never, NEVER!" And just in case someone over in the produce section didn't hear him, he repeated this proclamation every 20 seconds or so for the duration of our time in the checkout line.

My daughter, who never wants to be left out of the fun, decided that she could squeal louder than Alex could lament, causing the ground beneath my feet to quake. I quickly looked around to make sure we were not going to be hit by glass shards if the windows shattered under the pitch of my daughter's delight.

I held strong, I held true. I did not give in and buy the source of all this drama - a $1.00 matchbox car.

The checkout guy wouldn't even make eye contact with me. I know I saw him roll his eyes as I returned my credit card to the well worn spot in my wallet.

Now that Alex looks like he has a real short buzz cut, instead of looking like a cancer patient, the reason for his behaviour is no longer obvious to the judgemental shoppers burning scornful holes in the back of my head.

I just wanted to scream: "My son is battling cancer - and he is acting out due to the medicine he takes to save his life. PLEASE give me and my kids a break! I AM a good mother, I DO discipline my children, I DO set limits - which is why we are all subjected to this symphony of wailing to begin with!"

Once I rolled the shopping cart out of the store, I felt this calm rush over me, and I looked at my two kids and they were calm.

Did I imagine the whole thing?

Alex was smiling, and Tessa-Lynn was quietly watching the cars through the parking lot. I would love to get my hands on the security tape for that moment. I want to see the demon that possessed my son, leave his body and return to the toy aisle, where it will wait for the next Mommy to stumble into the Twilight Zone.

Cautiously Relieved...

Good news! The mom with the child scheduled to get the FluMist decided to have him get the Flu Shot instead! So, as of this moment, I do not know of anyone at Alex's preschool who will be getting the FluMist *after* 9/7/09. That means Alex should be able to attend the first week of school!!!!

While I am relieved, I also know that this will be an ongoing issue for the flu season - and Alex could get taken out of class at anytime because of complications from some aspect of his cancer treatment.

Crushed

Alex will have to miss the first week of preschool, because a child in his class is getting the flu mist on September 11th - only 3 days before school, and unfortunately, Alex cannot be around *anyone* who has had the flu mist vaccine for 7 days.

As a mother of an immunosuppressed child, I am frustrated, and terrified about this coming flu season.

Even though Alex will be getting the H1N1 flu shot, it isn't ready yet, so until then, Alex is so vulnerable to the flu - both the standard strain, and the H1N1.

I cannot find ANY documentation to show me that the flu mist is better than a shot - in fact, it seems like just a gimmick to me. Since kids already get "shots" in order to be enrolled in school, what is one more?!?! How many doctors ASK the parents if their child will be around an immuno-suppressed person, before they administer the flu mist?

I am crushed that Alex will have to miss his first week of school - something he has been looking forward to for a month now - I'm so mad that yet again, cancer is interfering with our lives.