Monday, July 28, 2008

Catching Up

Henry's birthday was terrific fun. His cousins and sisters all went along with us to Hershey Park and we were lucky enough to have fine weather - ok, maybe a little hot...but we're not complaining!

While Henry still cannot get his chest wet, we did venture onto the Canyon River Rapids. We have small transparent water barriers to place over his catheter site, which have proven to be effective and relatively comfortable to him. Despite the wait in line, he loved the ride and enjoyed getting wet and watching everyone else get the same.

Beyond that we all rode the small roller coaster together. The little boys - Henry and his cousin, Reuben - spend a lot of time on the smaller rides that I can only guess, tapped their imagination of riding in big trucks, airplanes and the like as they rode on them over and over!

My mom and Tara took Henry for the afternoon while the rest of us played in the more intense water area. It was very crowded and there was just too great a chance for submersion for Henry. It was a refreshing way to spend the afternoon and Henry didn't complain much at all for not participating that way. We finished the day with a short sea lion theater show which was very entertaining.

We all had a great time and didn't get back so late as to completely spoil the next day. We didn't make it to Chocolate World, much to the disappointment of the adults, but perhaps it will merit another trip at a later date. :)

Tuesday, July 22, 2008

Happy Birthday to You!

Henry's four today! We're off to Hershey Park today to celebrate. Once again we'll be joined by some visiting family, cousins from Kansas.

It's been non-stop since we returned. Henry's been playing non-stop and his endurance continues to amaze (and tire) us all. A quick highlight from recent days - a good friend pulled some strings to get us into the pit before a local monster truck rally. Henry's eyes have never been bigger.

He now says he wants to be a monster truck driver instead of a garbage man...sorry Grandma Linda, maybe you can be in the pit crew. :)

A special thanks to everyone at Hagerstown Speedway and to all the terrific drivers for taking their time out to entertain us for the afternoon.

Saturday, July 19, 2008

A Fitting End

"Your day has come to strike the bell,
Your silent heart has much to tell,
And much to toll this proud new day,
Treatment done, you're on your way!"
--poem next to the radiation bell

Yesterday was a day that we'd looked forward to for a very long time. Henry's last day of treatments - not just of radiation, but the duration of all prescribed treatments for Henry's cancer. We will have regular visits to the clinic for monitoring, particularly for his blood and immune system recovery. We will also be checking the response of the cancer to the entirety of his treatment as well. Our first check will be on August 7th.

But yesterday we celebrated. Tara and my mom arrived before Henry's final radiation treatment. Things went as planned and Henry wailed on the bell...four times! He received plenty of applause for each one too. The staff got him the Curious George T-shirt you see him in as well as a box of pop-tarts, these gifts were to match his habits of watching George each morning while waiting and gobbling pop tarts afterward.

The party then traveled to the Baltimore Beltway Chick-fil-a to meet Aunt Karen and Henry's cousins, Reuben and Clara. Little did we know that it was Customer Appreciation Day there. I think Henry thought it was decked out just for him. They announced his name as a special guest and presented our 'party' with little toy cows and balloons. It couldn't have been more fitting timing!

Our next stop was back down in Canton for a ride on the water taxi and then...a Pirate Cruise! For the most part, the pictures speak for themselves. There were water cannons, games, singing, dancing and a lot of Arggh'ing.

That pretty much wore everyone down for the day and it was so much fun. Tara and I lagged behind to clean up the place at St. Casimir for the last time. It was truly like a home away from home. The Believe in Tomorrow Foundation will always hold a very special place in our hearts. We checked out and headed home.

And now we'll try to figure out what our lives should look like now...and wait until August 7th.

Thursday, July 17, 2008

Last Day!!

Tomorrow is Henry's last day of radiation. Not that any of you were counting or anything!

We're all very very excited. The day looks to be a great one. There will be ringing of bells, cheering, cake, balloons, chik-fil-A, pirate ships, and water taxis (pictures to follow this weekend.)

We've already received many well-wishes from many friends - thank you all so much for your love and support to us, and especially to Henry!

Sunday, July 13, 2008

Day 100

This weekend Henry passed an important milestone: 100 days out from his second transplant.

Transplants cause such significant immune compromise due to suppression of the bone marrow and immune system that even though Henry's numbers look pretty good, he's still considered at risk. For the last 100 days we've needed to take the following precautions with him:

  • wear a mask near any groups of people (especially indoors)

  • not be around any sick people

  • wear a mask near any active construction sites

  • no consumption of fresh fruits or vegetables, with the exception of those things that can be washed and peeled

  • no handling of plant products, or playing in the dirt or mulch

  • no fresh cut flowers in the house

  • no eating from any communal sources (ie bag of chips)

Day 100 is a big milestone. He's now allowed to be around people, and generally doesn't need his mask anymore. As soon as his radiation is through, we can expand his diet to include all the watermelon and blueberries that he wants. And he can touch things that up till now we've all shouted "No, germs!" about.

We celebrated by hitting the grocery store, where he was tickled to be able to eat his cookie IN the store instead of waiting until we got into the car. We spent all weekend teasing him with "Quick, Henry, put on your mask!" so that he could gleefully remind us "But I don't need it anymore!"

He's still not back up to full strength; that's still three months (and several vaccinations) away. We've been warned that he should be kept away from anyone with an illness, as he's still susceptible. Any fever demands an immediate trip to the ER (but not necessarily an admission to the hospital). While he's now allowed to play with buddies his age, he's not quite ready for preschool due to the huge volume of germs there, so that will have to wait a few more months.

We head back down to Baltimore to start our last week of radiation in the morning. We're so close we can taste it. Tonight, he picked a big bouquet of daisies for his Grandma's birthday, and we didn't have to tell him not to!

Friday, July 11, 2008

Five Days

It's Friday and Henry and I returned home unexpectedly early yesterday evening. He's completed 24 of his total 29 radiation treatments, the remaining five left for next week now after the machine (a linear accelerator) had problems that couldn't be fixed yesterday.

All and all he's tolerating the radiation regimen very well. It's caused only some very minor appetite problems, his immune system has had a few small issues and the back of his neck is peeling like he's had a bad sunburn. He's scratched at it a little and made it bleed slightly, but that's the extent of the discomfort he's had to endure. He's acclimated quite well to the anesthesia and not being able to eat in the mornings too. Additionally his regular weekly bandage change for his catheter has been done under sedation for a month now so he has avoided that event successfully which is a bonus.

We've treated our time in Baltimore like a vacation otherwise. We've been to see Kung Fu Panda twice now and also caught Wall-E. We've taken several rides on the water taxis which are a real hit. We went to the Baltimore Zoo one day as well and Henry got to feed the giraffe which he still is talking about.

We've toured the U.S.S. Constellation, the Lightship Chesapeake, and the U.S.S. Torsk Submarine, and the Seven Foot Knoll Lighthouse. The girls were with us last week and we got to ride the dragon paddle boats in the harbor and got an impromptu tour of a Baltimore County Fire Truck.

Most recently we were treated to a ride on Sea Bard, a sail boat of a friend that we tooled around the Harbor on. The captain was kind enough to let the kids pilot for a while, which I'm sure confused many of the other folks out in the harbor that day! Thanks Captain Michael!

I would never have thought it, but our time at Casimir this time around has been downright pleasant apart from the obvious occasional family separation. Henry's endurance astounds us all - he knows no such thing as 'radiation fatigue'. After all he's been through, the little kid in him still comes shining through very consistently and his increasing maturity makes him a good partner to spend the day with.

So it's with great excitement that we anticipate his treatment finishing next Friday. Only 5 days left! We will miss our new friends, but I'm sure they'll understand how glad we'll be to be finished after 9 months of treatments!

Friday, July 4, 2008

Alex's Lemonade Stand - THE BIG DAY!!



What a day. We have been blown away.

But before we get to the nitty gritty, here's a bit of the fun we had!

Anna, Sophie, and Henry were handily assisted by neighbor and friend Alexis.

Lines for Lemonade.

Our encouragement to customers.

Once the sale died down, the girls took the show on the road and came home with $50 after they were sent out with two pitchers of lemonade. That's some selling!!

On to the haul:
Right now our totals are in a bit of a state of flux, but here's what we've got.

Pledges online: $1130

Pledges offline: $1400

Cash made today from the yard sale: $370

Cash made today for selling lemonade: $568

Number of cups of lemonade sold: 200

Money owed based on per-cup pledges: $700

Wow!!!! $4168!!

We had a fabulous day. The kids all really got into things.

Thank you all, for all of your support. Thank you to our friends who drove 90 minutes to get here for a cup of lemonade. Thank you to the many yard salers we don't know, some of whom dropped in a $20 without thinking, for a glass of lemonade. Thank you to our neighbors, friends, coworkers, teachers, who took time out of a much needed day off to stop by and support us. Thank you to our neighbors who directed traffic our way. Thank you to the neighborhood gang for chasing people down screaming "Lemonade!!" Thank you to those who pledged online, and those who sent us checks.

Here's to Alex!!