Saturday, October 31, 2009

Halloween... Day 353 31OCT09


We made it through a holiday and we are still at home with Joshua feeling just fine!

The kids had a fun day preparing for Halloween. They tried out different costume ideas until they each decided on something. Joshua became a GI Joe white ninja and Jarrod became Dr. Death. They both donned their costumes and we headed over to Jim and Sally's to join them and Cameron and Jayden for trick or treating. The kids had a blast and managed to amass a pretty good sized pile of treats before the evening was through. We also got to enjoy Jamie and Christian's company along with their friend Andrea and take Miss Allie out for her first Halloween. She is just too cute and has recovered nicely from her bought with thrush. She was back to her normal princess self.




Friday, October 30, 2009

IMAX and pumpkins... Day 352 30OCT09

Joshua had a pretty normal day today. He was a little tired but nothing drastic. Jarrod had a fun day with Jake his big buddy from the Children's Cancer Center. Jake is a medical student who volunteered to spend a year hanging out with Jarrod and doing fun things. Today they went off to see an IMAX film at MOSI and hang out at the museum. Jarrod said he had a great time. When they got home he carved pumpkins with Jarrod and Joshua. They look really good.

The adults had a less than stellar day unfortunately. Renee and her dad got stranded for a while when his van decided to die on the way to an appointment. We had to do a bunch of driving and shifting around but we managed to get everyone where they needed to be. My car decided to start acting up a little later in the day. I think I know what is wrong and it looks like I will do a little mechanic work in the morning. Hopefully I can get it fixed.

So the kids had a good day and we had an adult day.

Man I wish I was a kid again...

Tampa Bay fights cancer... Day 351 29OCT09



Tonight was the Tampa Bay fights cancer night with our hockey team the Lightning. We were joined for the evening by Renee's parents and Her brother Scott's family. We were ten strong and had a wonderful time. The Lightning played a very exciting game and even managed to win by a good margin. After the game we got to go back and meet most of the players on the team. Joshua, Jarrod, Taylor, and Avery got tons of autographs and enough hockey pucks to start their own team. It was a wonderful evening sponsored by the Yerrid Foundation and a great way to support kids dealing with cancer.

Wednesday, October 28, 2009

Blah... Day 350 28OCT09

Joshua's attitude was better today because the chemo he got on Monday caught up with him. He started to ache this morning and spent a good part of the day resting and laying on the heating pad. He seemed to feel a little better this afternoon but was just pretty blah overall. Renee said he was pretty whiny and needy all day and went to bed on time for a change. We have all been struggling to readjust to Florida time since we got back.

Joshua has two loose teeth and he was trying to wiggle one out of his head this afternoon. He tried, Renee tried but the tooth won. Just not time for it to come out yet. I would imagine though that the tooth fairy will be visiting soon.

video

An article about Joshua's dream trip was published today in the Tribune. It was nicely written and had some great pictures of the kids. Click here for the online version.

Tuesday, October 27, 2009

Melting down... Day 349 27OCT09

Joshua was in rare form today, the steroids have taken a firm hold. He had several full scale chernobyl style meltdowns over seemingly innocuous things. Life with a child on steroids is no fun. It is life with an armed and ticking bomb. During the quiet spells Joshua worked on his LEGO's and was glad to display them for me and let me take some pictures. Timing is EVERYTHING.



Jarrod was busy today designing and building micro-scale LEGO skyscrapers. He came up with some nice designs.




Allie came over to stay this evening while Jamie and Christian went out to celebrate their first wedding anniversary. Hardly seems possible that a year has passed already. Allie has a pretty bad case of thrush but is responding well to the meds. Hopefully she will be back to normal in a few days. It can't be pleasant to have your mouth going all gooky on you.

I believe I may have, according to several people I talked to today, confused you with the picture of the miniland figures of Josh and Jarrod that I posted yesterday. The mini-figures they built are still living in Miniland USA in California, look for them when you visit. Gary, the Master Builder, made a duplicate set for the boy's to take home with them.



Monday, October 26, 2009

Parts one and two... Day 348 26OCT09


PART ONE:

Where I actually tell the story of our return trip from California while lucid and not sleep deprived.

The boys were really sad to leave California. Their time in Carlsbad was magical and full of fun and memories I am sure they will keep always. They also totally loved the weather and the landscape of the area. We all did. Joshua's limo came and picked us up for the half hour drive back to San Diego airport. Once we got to the airport it was a short wait before we boarded our first flight to Houston. We had a pleasant flight and a short wait in Houston before we continued on to Tampa. By the time we got to the Tampa airport we were all just plain tired of sitting down and we still had to drive home. All in all the trip back was good, no problems and smooth flights. The boys did remarkably well traveling and were a joy the whole time we were gone. It was wonderful to get away finally for a few days and just not worry about all the things we usually worry about. LEGOLAND was magical and we had the chance to really watch the boys be overwhelmingly happy for the first time in quite a while. Thanks so much to all the people who played a part in delivering Joshua's dream.


Mini-Josh and Mini-Jarrod at home.


PART TWO:

Where I tell the story of today and how we had to hop right back on the cancer train.

We were awoken this morning by a call from a plumber my mother had called to deliver and install my birthday present. A brand new water heater! Not the normal kind of thing one receives for a birthday but something that was most definitely appreciated and I can scratch it off my wish list for at least 10 or 12 years.


Joshua and Renee left soon after to head to the clinic. Josh started another round of maintenance today and had to get an LP and chemo. More beads to add to his string. He also got to start another round of prednisone which means the nice Joshua will be on vacation for a few days more. The LP went well and his counts are good: ANC at 1500 and platelets at 200. As soon as he walked in the house he went straight to building the LEGO's we got him at LEGOLAND. Jarrod had been working on his most of the morning. They were heads down for the whole day, totally absorbed in the construction of their creations. The end results are amazing. It is wonderful to watch them as their minds whir and there fingers click and LEGO machines spring into existence.

So now we resume our "normal" lives, Joshua's dream trip has been realized. The memories burn bright.






Home... Day 347 25OCT09

We made it home from California in one piece. The trip was great with no delays or frantic charges through airport terminals. We are all as you might imagine exhausted and we just discovered that our water heater is leaking and will need to be replaced. Not exactly the homecoming we had anticipated but at least it didn't flood the garage while we were out of town. Now it is one o'clock in the morning and we are waiting for all the water to drain out of the water heater so we can go to bed. Looks like I get to do some plumbing tomorrow...

Sunday, October 25, 2009

LEGOLAND X 2... Day 346 24OCT09




Today was our second and unfortunately last day at LEGOLAND. The boys had another wonderful day running amok through the park. They had by their own count ridden every ride and visited every exhibit that they wanted to do or see.

We took a break in the late afternoon to come back to the hotel to get ready to go eat dinner. Tonight we were treated to a wonderful seafood feast by King's Fish House. The food was amazing and Joshua got not only his favorite crab legs but a grilled cheese sandwich as well. The crab legs were wonderful and we all ate too much again. Joshua named the lobster Lulu and wanted to keep it as a pet.



After dinner we scooted back to LEGOLAND for the brick or treat festivities. The boys had a great time and finished off their day with a ride on the Technics roller coaster. We came back to the hotel tired but happy and the boys took a dip in the pool before retiring for the evening.

Tomorrow we begin the long journey home but not without a suitcase full of LEGO's and a passel of wonderful memories of how happy Joshua was during his dream trip.

Saturday, October 24, 2009

Where do we begin... Day 345 23OCT 09

I am not sure where to begin tonight. Today was utterly fantastic and wonderful. There are so many things and people who made today unforgettable and special.

Let's start with this morning. The boys got a good nights sleep and woke up refreshed and ready to go to LEGOLAND. They got together and planned out all the things that they wanted to do and see.


We got dropped off at the front gate and our adventure began. The park is amazing and I am afraid words and pictures will fall woefully short in describing it. To Joshua and Jarrod is was like stepping into a fantasy.




They had a wonderful time and we had to force them to eat or take a break. They went non-stop all day. The people at LEGO are great but two special people will always have a place in our memories.


The first was a wonderful lady named Renate who works in the LEGO factory, when she saw our shirts she asked Renee what they were for. When Renee told her that Joshua had leukemia she started crying and told us to wait where we were. She came back a moment later with her keys and proceeded to give Josh a behind the scenes tour of the LEGO factory exhibit. The boys got to make there very own LEGOs. No other human hands have ever touched them. She also gave us a bunch of rare collectable LEGOs to take back to the kids at the Children's hospital. She was really wonderful. This was a totally spontaneous thing on her part.

The other person is Gary the LEGO Master Builder who we met this afternoon. He has been playing with LEGOs since he was four and has even worked with the Myth Busters on the Discovery Channel. He gave us a tour of his workshop and then sat down with the boys to design and build miniature LEGO replicas of each of them. After they were finished he walked us out to LEGO Miniland USA and asked the boys where they would like to place their mini copies. Jarrod chose to be on a sailboat in the harbor of the northern California area and Joshua's copy now resides on the front steps of the White House. They are now a permanent part of the park! Amazing! Gary was a wonderful guy and made the day very special for both boys.




The cancer world is a small one. While standing in line for a ride we, because of our shirts, met another cancer family. Their son Ethan is a pre B-cell leukemia patient who just entered maintenance. They were visiting from Kansas City. What are the chances...

We only left the park because it was closing for the evening.

We returned to the hotel to change and get ready for dinner. We took a drive on the PCH up to Oceanside and then headed to Bistro West for dinner. Paul the manager welcomed us at the front and took us back to our table. The food and service were absolutely fantastic! If you are ever in Carlsbad you must eat here. Paul and his staff were fantastic and we ate until I thought we would explode.


We headed back to the hotel after dinner and have been relaxing ever since. In the morning we will return for more excitement at LEGOLAND!

Friday, October 23, 2009

California!... Day 344 22OCT 09


We are in California! It was a long trip but we made it without any major problems. When we arrived at the San Diego airport it was 70 degrees and sunny! Perfect weather. Joshua's limo driver Rick was waiting for us at the bottom of the stairs and whisked us off to our wonderful hotel just up the hill from LEGOLAND.



The view is incredible, not only can we see LEGOLAND but the Pacific ocean as well. The boys wasted no time in checking out all of the grounds and have already spent some time in the pool.


For lunch we ate outside on the terrace overlooking the ocean. What wonderful California delicacy did Joshua order? Why a California grilled cheese sandwich of course.


This afternoon we drove down to La Jolla to see Seal Rock. The boys have never seen any of the following: A seal; the Pacific Ocean; a beach that includes cliffs; the sunset in California. The water is relatively cold but everyone got their feet in for a bit. We had a nice drive back up the coast to Carlsbad and then it was time to crash. We are all pretty tired from our travels and the boys fell asleep as their heads hit the pillows. In the morning we are off to LEGOLAND!!