Tuesday, September 16, 2008

Lucky Day

Despite the grim anniversary date of Joshua's clinic appointment, 9-11, Joshua is calling it his lucky day!

I dont know when Joshua outgrew his sleeping-the-whole-way stage, but he now only naps a short time, somewhere in the middle, then we spend the last half hour of him asking, "Are we there yet?" I usually reply with how many miles we have left and the next five minutes he will ask, "How many more miles?" So as we are entering the city and he sees the tall buildings, he decided he wanted to count down the last minutes. So we have a little game where he says the first number and I say the second number, until we reach 60. Then we start over until we reach the desired minutes. When you say there are only 5 minutes left, and thanks to construction and detours there are actually more than 10... this makes a long game.

Josh decided that he wanted to wear his mask this month because he didnt want to get sick like last month. He's such a smart little man! But the only mask I had was a heavy duty adult mask. Josh was so happy to get back to our room so he could take it off! But before we got back there Josh was playing in the waiting room and found TWO strips of stickers! Lucky Day item #1!

Next, Kaykin (Kaitlynn) made a bet with Josh that he would cry when he got his port accessed. (Using a little reverse psychology). Usually we bet in back rubs, but this was a BIG bet worth one_whole_dollar! When the nurse came in to insert the needle, he got a little nervous, but he was already sitting on my lap and I quickly reminded him of his bet with Kaykin. He couldnt let her be right, so he sucked in his breath, puffed out his chest, and held on for dear might. It wasnt until after the needle was in that he left out his breath and waited for her to finish. The nurse wasnt out of the room yet and Josh went over to Kaitlynn and told her to "cough it over!" After we finished laughing in hysterics and she gave him his bribe money for the vending machine, he let out a self-assertive, "Sucker!" Lucky Day item #2!

Some of you may be familiar with the elevator game we play when we get to the hospital; and no, it isnt us racing each other on different elevators to our destination floor. There is a set of silver elevators that takes us up to to Floor 4B, almost never are either of the elevators on the first floor when we get there. Josh likes to race over to the elevators and press the "Up" button. While we are waiting, Josh chooses which elevator he thinks will get there the fastest. The big people's bet is then placed on leftover elevator. Winner gets a massage of their choice. Josh won the silver elevator bet, and of course he choose a back rub. On the way down we take the yellow elevators, they lead us to the cafeteria on the ground floor. There is one elevator on one side of the hall, and another on the opposite side. Again Josh somehow lucked out and picked the right elevator, this time winning a foot massage. I'm telling ya, it was close too, as we watched the numbers climb, I thought for sure I would win the second race, but somehow mine stopped on the floor below and didnt move again. fikir

So we get down to the cafeteria, and Josh orders his usual chicken fingers complete with his beverage of the day. We were sitting at a table eating and a Childlife volunteer comes to the table and asks to sit down. He had a box of baseball cards and he told Josh he could pick out 20. Then he told Josh the only problem was that he didnt know how to count. After much deliberation and nitpicking, Josh settled on 17 cards. Baseball players, basketball players and he said he even needed some football players. Dont know who any of them were, but this was Lucky Day item #3! He could not wait to get home to show them to his daddy.

Then on the way out, the volunteer stopped Josh again and gave him Spiderman stickers. Spiderman! Of all people. "Can you believe how lucky I am today, Mom?" Lucky Day item #4!

On the way back up to the first floor, we again wait to board The Yellow Elevators. For the third time in a row, this fortunate fella won again, proclaiming that this time he wanted a shoulder rub! I told him we were lucky that this was the last elevator because he was running out of body parts to massage. Lucky Day item #5, 6 and 7!

When we got in the car, Josh was so excited he told us, "nobody is gonna ruin my Lucky Day." Kaitlynn and I couldnt help but laugh and before we even put the vehicle in Drive, I grabbed out my notebook to take notes so I wouldnt forget to journal about his prosperity!

Oh! I almost forgot to tell you about his other Lucky bit of news. His doctor told him that next month he can have his port taken out. Josh was asking him if it could be before we go to Florida because he wants to swim at the beach, so Dr. Wollman told him that it wouldnt be before our Lighthouse vacation, but we then tried to explain to him the difference between the ocean and a lake and why he would be able to swim in Florida. He couldnt wait to come home and tell everyone about that!! Lucky, lucky day!

Monday, September 8, 2008

Pepper in some hope

OK guys, it's that time of year again. Childhood Cancer Awareness Month.

gold ribbon Every day 46 children are diagnosed with cancer.
....................when I first read this statistic, I remember thinking: "Only 46 - out of the whole United States? And one of them was my son????" I never seen it coming.

gold ribbon 1 out of every 330 children will be diagnosed before they are 19.
....................our softball league consists of 350 children aged 5-18... Joshua drew the short straw.

gold ribbon 1 in 4 children will not survive...
....................someone once told me that 75% was a good survival rate. Let me ask you this: if you knew that 1 out of every 4 children that got on a roller coaster would not make it off - would you let your child on that ride?

gold ribbon 35,000 children are currently fighting this battle.
....................If it's someone you know and love; one is too many!

gold ribbon Number of new drugs developed for childhood cancer in the past 25 years: ONE

If you guys will remember back, last year we (parents of children with pediatric cancer) flooded the internet asking everyone we know to write their congressman to ask them to support the Childhood Cancer Act. The letters were heard!!!! The bill passed this spring and was signed by the president on July 29 becoming law! This means that $150 million over a five-year period will be allocated for pediatric cancer research!

What a giant step.

Also since last year, in conjunction with the bill Senators Wayne Allard and Hillary Clinton introduced a National Childhood Cancer Awareness Day resolution. “National Childhood Cancer Awareness Day” is September 13, 2008. I dont know what this means yet... I mean how many gold ribbons have you seen on your grocery store shelves? Have you seen all the commercials? All the TV news stories or newspaper interviews? Me either... But I hope this year is the beginning of something great. To quote Senator Clinton, "National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure."

Awareness, whether it's one day, one month or an endless tirade, is designed to draw attention to the troubles of childhood victims of cancer. By helping to bolster awareness and coordinate a National effort; families, doctors, friends and whole communities can work to improve the lives of children with cancer and those children who will be diagnosed in the future.

A friend from my childhood cancer support group devised a plan to hand out 46 hand-made gold ribbons every day this month to represent each child that will inevitably be diagnosed with this life-altering illness. I dont know if I can match such numbers, but I will also hand out gold ribbons this month. Wear them proudly to show your support. Everyone knows what the pink ribbon represents - let gold be the new pink!

The girls have devised their own plan against our battle this month. Chili's Restaurant will once again host their annual fight against childhood cancer and for every person who dines at Chili's on September 29 they will donate all proceeds to St. Jude Children's Research Hospital. Also on their website is a place for you to design a pepper. The girls have colored theirs, and they challenge you to make one yourself. If you go to their site, the program is very easy to operate. After you created your pepper click on the "Finish Your Pepper" button. Then on the next page fill out the information and choose the "Save and Share Your Pepper" link. This will then take you to another page with a picture of your completed pepper. On the right-hand sidebar there will be an option to "Add Pepper to Your MySpace Page". Click on this link. It will then show you a box with a whole bunch of gibberish code in it. Highlight all the text, right-click on it and COPY the code. Then visit Joshua's guestbook and PASTE the code into message. Be sure to leave your name and city so we can see who made him a Pepper, the girls will track it on a map for Josh. This should be fun. The girls are excited to see your work! Their goal is to see 46 peppers by the end of the month. Have fun!

...and dont forget to put on your ribbon!!!

Tuesday, September 2, 2008

Deja Vu

Only one week of school and Joshua will already miss his first day of school today, just like last year. We are on fever watch. Even though Josh is off-treatment now, as long as he has his port, he still has to go to the emergency room if his temperature reaches the all-mighty magic number or higher. Which he will most likely keep for "at least 6 months after treatment" according to his oncologist. He has been running a low-grade fever all weekend, but so far we have managed to stay out of the ER and even though he is feeling pretty crummy, he isnt letting it hold him down much. He insisted he ride is bike out front every day of this holiday weekend.

Joshy's last appointment was on the 14th, this month has seemingly gone by super slow. Which doesnt make sense to me since I was so busy planning his party, but for some reason I keep thinking we go back to Pittsburgh this Thursday but it actually isnt until next, on the 11th.

This is Joshua's second "cold" since his clinic visit. I think that might be a factor of why it seems this month has stalled.

When we went to the hospital last month Joshua didnt wear his mask (because he had played with it the day before and ruined the very last one I had). While we were in the examining room Josh surprised me and asked the doctor if she could give him another mask for when we leave. She told him that he didnt have to wear them anymore now that he was done with treatment.

Later that night, out of the blue, Joshua looked at me and declared, "Mom, isnt it cool that I dont have to wear my mask anymore?"

I was so excited for him.

Then the very next Josh started to get sick and with sad eyes he said, "I guess shoulda wore my mask."

My heart broke for him.

But I am glad he was feeling better for his party and then his first week of school, but here we are with another illness. Maybe it's the time of year. I dont know. But I admit I dont mind having him home to myself again. I already emailed his teacher and Halie will be picking up his work for him to do at home later.

Currently he is snuggled up on my side while I tap away lopsidedly on the lap top. Which reminds me, Aunt Kay, your afghans couldnt've come at a better time. We all absolutely love them, especially as the nights start to get colder here, but Josh has been dragging his around with him and cuddling into his everywhere.

His appetite has fallen again, but I imagine it is because he's not feeling well. Likewise, when he was outside yesterday he was trying to play with some of the neighborhood kids but he tired out real easy. What started out as 6 kids playing hop scotch, quickly morphed into 13 kids ranging in age from 4-13 playing freeze tag. I had fun sitting on my "California-born" swing watching them all play. It wasnt long into the game though that Josh came home and sat with me on the porch. He then decided he would ride his bike down a few houses where the kids were playing. He sat on his bike and watched them run around.

Well, I hope this funk leaves soon and he can get back to enjoying his OT life!

On a side note - I hope everyone enjoys the new site. I decided to transfer all of Joshua's CaringBridge journals over to this blog. I love the freedom of being able to add lots of personality! I have gone back through past journal entries and added pictures and slideshows here and there. If you have any spare time you might want to take a look. I will continue to post to his CaringBridge, but only briefly and only to inform readers that his page has been moved, but eventually I will probably just close that site. So if you look around here, you will see you can either leave individual comments, or you can sign the guestbook, and now you can add your own personal touches too! As usual we will read these to Josh as he really loves to get mail and he is starting to read some words on his very own! Also you will find a email notification box on the right sidebar. If you would like to be notified whenever I update Josh's page, you can subscribe there, or if you'd like me to add you manually, just drop me an email.

I hope everyone enjoyed their Labor Day weekend! Like I said earlier, Josh goes back to P-burg next week so I will try to update again then.