Monday, September 21, 2009

Thanks again to everyone who has supported TEAM JOSHUA. I am 85% of the way to my personal goal, and I am proud of our Team and all their hard work. Cant wait for the walk tomorrow. Will be sure to take lots of photos!

The Leukemia and Lymphoma Society has been very helpful to our family over the last 4+ years. They are a great resource - a wonderful support system - and we are very grateful they're around!

Thanks again to everyone - from your donations - to spreading the word around - to joining our team for the walk!!!

Much Love and Gratitude,
Team Joshua

Thursday, September 17, 2009

2009 Light the Night

Just in time for Childhood Cancer Awareness Month, my family will be joining the Leukemia & Lymphoma Society's for their Light the Night walk, on September 22. If you would like to help in the Mission to wipe out blood cancer you can do so by following the link.

Light the Night Team Joshua Page

If you are interested in joining our team, just go to the Team Page and register. From there you can raise your own funds or simply join us on the walk next Tuesday beginning at Jerry Uht Park!

Join Team Joshua

The picture is from our walk a couple years ago. We are excited that the walk is now in the city and we don’t have to travel to Northeast for the event.

Josh is looking forward to it. They always spoil the Survivors; he already plans on wearing his yellow survivor shirt that he informs me he finally fits in! I’m going to have to take a picture of him in it before the walk…

Thanks everyone!!!

Tuesday, March 3, 2009

Out of the Mouth of Babes

I dont know in what moment in time people go from being innocent and trusting to cryptic and skeptical. I mean -- was there a line on the playground that we one day crossed over?

Do we one night go to bed thinking our parents are the greatest thing next to peanut butter and jelly, to waking up the next thinking they are a kink in our cool?

I dont know - but when I look at my teen-aged daughters, then to my unobjectionable sons, I find myself longing for them to stay young forever!

Then they do something like finger paint with the above mentioned peanut butter on the kitchen walls and all yearnings go out the window!

No really, from a mom with an array of children, I've experienced a lot of joys throughout the past 17 years, even still from the difficult teen-aged ones - believe it or not.

Kaitlynn: who is fast approaching graduation, who has been driving for over a year now, who has her own job and making her own life and circle of friends will still come to me for advice and always kisses me before she walks out the door.

Halie: who just joined the teenager ranking not too long ago, who spends more time on her cell phone texting then conversing with her 'rents and who readies herself for high school next year, just curled up on my lap tonight as we watched "The Bachelor".

Kennidy: though not quite a teenager yet and is faithfully Daddy's Little Girl, still calls me "momma", and every now and again will come to me to brush or braid her hair and still asks to be tucked into bed at night.

Joshua and Nathan: two peas in a pod, yet night and day in personalties. The boys are inseparable. During the day, when Joshua is at school Nathan is a different person, but let Josh walk in the door and Nathan wakes up as a different boy - like his other half is home. Of course they fight like cats and dogs too, but I wouldnt have it any other way (well maybe I would ;-)). I love to watch the two of them play. Joshua waits for me every night to curl up in bed with him until he falls asleep, Nathan on the other hand waits for me to fall asleep so he can get up and see what he can get into - like pouring maple syrup on my beige bedroom carpet - did that sound like the voice of experience?

Throughout the years all the kids at one point or another has said something to remind me how unsullied children are. Once, when Kaitlynn was just shy of 7 years old she was writing on the backs of her school pictures getting them ready to mail to her grammas and grampas and cousins and aunts. Naturally she wanted to write her age on the picture - and she wouldnt dare put 6 on there, oh no! she was far older than 6 - she was 6 and 3/4's. So when she informed me that was what she was going to autograph, I asked her quite simply if she knew how to write that. To which she replied by drawing a 6000 on the back of the picture. Oh but it wasnt just a number - it was a 6 and three large circles behind it - three "quarters" to be exact.

How could I possibly correct her?

And I know there have been many more "out of the mouth of babe" stories over the years, sadly a lot of which I have long forgotten. That said, most recently Josh said something I wanted to share and journal so I dont lose that to Senility and Father Time too. It's not nearly as priceless as the "16-eva" story, but definitely noteworthy nonetheless.

Kaitlynn, Halie and Josh made a trip to the store to pick up a few groceries. As Halie was putting a case of water in the cart, Joshua was practicing his new-found reading skills and declared, "Spring Water? Halie, shouldnt we be buying Winter Water!"

Ahhh... maybe that's what we've been doing wrong all season!

Friday, February 27, 2009

headaches - schmedaches

Since the beginning of the year Joshua has been experiencing headaches and leg pains. At the beginning of the year there were more headaches then anything. His teacher and I had to keep a journal so I could report them to the doctor at January's visit. Two different doctor's looked him over and they sent us home with instructions to call them if the headaches persisted over the next week. The one doctor felt swollen nodes on his groin, but Dr Wollman didnt say anything about them this month and I didnt ask.

The headaches are appearing in the same fashion as the headaches he got last year when his spinal pressures were high. The doctors were concerned though because since he's not on chemo anymore, they tell me his pressures shouldnt be up. They said if continued or got worse they would order another MRI to check for fluid or pseudo-tumors.

His headaches did continue, but since they didnt increase in intensity, they decided to wait until his visit this month. One this is for sure, joshua is very resilient and doesnt like for things to get him down. He lives to play and plays to live!

His last visit was on Kenni's birthday, the 24th. While his headaches have seemed to taper some, he has had an increase in leg pain and even complained of his shoulder hurting on one occasion. I have to tell you, since leg pain is how Joshua presented with the cancer in the beginning, this has made me a nervous wreck lately. It's ironic, on one hand being chemo-free is so liberating and dont get me wrong, I am so happy for Joshua, but the security of the chemo keeping his leukemia at bay is gone and I cant help but think about him relapsing at every sneeze, bruise, or 'growing pain'.

The risk of him relapsing is greatest around the first year mark, so hopefully as that passes my nerves will be put to ease some. I have talked to other cancer-moms and turns out this feeling is common and it does indeed lessen as the years build up between the off-treatment date.

Anyway, Josh has also been fighting a cold since January - turns out he has Bronchitis. Hopefully that is where his headaches are coming from. They cant explain the leg-pains yet, but they are going to hold off on any Lumbar Punctures or Bone Marrow Biopsies as to reduce any unnecessary stress to Josh just yet. So far his [blood] counts look good and his platelets are holding strong, so that is very reassuring! So I'm going to take a stance on this kinda of like Joshua in the picture above - one BIG FAT PHEWY to Cancer - enjoy each moment!

Monday, February 2, 2009

Six Pack Fever

Here We Go Steelers
Here We Go!

The weekend started out with the kids' school spirit day. They werent allowed to paint their faces, but we found a way around that! Joshua had on his Polamalu jersey and carried his picture of the Steelers and him taken a few years back when Josh was inpatient. Remember we had tried to get Troy to sign Joshua's bald head, but his 'handlers' would let him. :shrugs: Halie was all decked out in her Steelers gear and even borrowed my scarf. At this point, I think Joshua thinks the Steelers are in the Super Bowl every year! Woo Hoo!

Sunday came and the pre-game festivities started before the last member of our zoo had their teeth brushed! I painted my face, Halie painted hers, we painted both the boys and even my mom got in on the action! Kenni and Kaitlynn were the lone party poopers, but not for lack of us trying ;-)

The boys' favorite part of the whole game were the 3D commercials. Jon's favorite part was the food and heckling me. I sat on the edge of my seat and by the time the game ended I didnt think I would be able to stand without my knees buckling. I swear this is true. I dont know how the players themselves held up - I was a nervous wreck! We were all doing the happy dance when Big Ben threw that pass to Santonio in the last seconds - way to go Boys!

Wednesday, January 14, 2009

A little late for Christmas

Josh lost his two front teeth!

We were sitting at the table eating dinner -- pizza -- when Josh made a funny face, exclaimed that his tooth "broke" and spit it in his hand. Sure enough his bottom right tooth fell out on it's own. I had been wondering when it was going to happen. A lot of his kindergarten friends have lost their teeth, and remember Josh is one of the oldest in his class due to us pulling him out of kindergarten last year. But his teeth are extremely small caused by him grinding his teeth as a side-effect of one of his chemos.

So we checked his other tooth and sure enough it was loose too! Joshy would NOT let us try to pull it for him (to Jon's dismay), not for any amount of bribes.

And we tried!

But after a lot of suggestions from his sisters, and coaxing from Jon and Nathan, Joshua pulled the second tooth himself!

They really were ready, you can already see his adult teeth popping through. He was excited to go to sleep that night and wait for the tooth fairy. He woke up in the middle of the night and woke me up to let me know she had come.

FIVE WHOLE BUCKS he made. Our day started early the next morning as Joshua had an appointment in Pittsburgh, and he was excited and proud to show his doctor his missing teeth! All day his mind was focused on the money in his pocket and he badgered me to take him to the store to buy a Ben 10 toy!

He's all ready to pull the other ones and keeps checking for loose ones daily. He's figured out he has a gold mine in his mouth!

Wednesday, November 19, 2008

Josh has been Deported!

Have you ever wondered what the little bump in Joshua's chest was? Did you ever wonder what it looked like? Well today's your lucky day - and Joshua's! Yesterday he had his surgery to remove his "tubie". He is still a little sore, but he is more proud of his battle scars and more interested in showing off his port, that his pain isnt anything a little Tylenol isnt taking care of.

We didnt have to drive all the way to Children's to have his port removed. The hospital has a Same-Day Surgery Center in Wexford, that is about 20 minutes closer than Pittsburgh. It was nice because it is much smaller, more intimate and we didnt have to run from one floor to the next for pre-op and post-op recovery like we were used to doing in the Hospital. Josh enjoyed the different selection of toys they had to choose from!

Once again, I forgot my camera, but I did take some pictures with my phone. I had a picture of Jon dressed in white scrubs, complete with booties over his shoes, a cap over his hair, and a mask, but after I took the picture of him holding Joshua getting ready to head into surgery, I absentmindedly shut my phone without first saving the picture. So the image inscribed in my mind will have to portray to you guys with my words.

We arrived in Wexford at 1:00, his surgery was scheduled for 2:30, and he was out of surgery by 4:00 eating a Popsicle.

As you can see he woke up in good spirits and very hungry after being NPO all day.

We got home late that night and all he could think of was eating McDonald's and showing Nathan his bandages and port.

The port itself was sewn into Joshua's chest, in the middle is a clear rubber-like gasket which accepted the needles poked through Josh's skin without error. The tube was inside of one of his arteries that led to the heart.

Having a port-a-cath wasnt necessary to receive chemotherapy, but it sure made Josh's life "easier" not having to deal with multiple pokes in the veins in his arms and hands.

Josh has a book called "A Port for Me" that he received when he was first diagnosed, but now that he is starting to read, he loves to look at this book, and he wants to take it to school along with his port for Show-N-Tell when he's allowed to go back to school. We are keeping him home for the first two days then he is on "light-duty" until his site is healed. Of course all Nathan wants to do it wrestle!

Saturday, November 1, 2008

Happy Halloween

Sorry for the poor picture quality, but my digital died and this was taken with my phone - cell phones just were not meant for photography!

As you can see, Joshua and Nathan were Power Rangers, Josh is in the blue and Nate in the red. Kenni and Halie were Zombie Prom Queens. The kids had a wonderful time and I was so excited for Josh! This was his first year since diagnosis that he didnt tire out in the first 15 minutes. He ran down the street with the rest of the kids. It wasnt until the last half hour or so that he was pooped, but so was Nathan. It is amazing to see the difference in his energy. I guess we had gotten so used to seeing him one way that it was starting to appear normal. So the boys and I headed home and the girls finished off the last half hour by themselves. It was the first time they went off without us and it was a weird feeling.

Of course they got lots of goodies, I thought I had a picture of their stash piled in mountains on the table as we went through it, but it disappeared off my phone. Just as well because the picture quality was likely poor anyway.

I almost forgot to mention, during our walk we happened upon, not one, but TWO haunted "houses" set-up in our neighbors' yards. The boys ventured into both of them and made it out unscathed. They were so proud of themselves!

--Just in case you were wondering, Kaitlynn was working, not that she trick-or-treats anymore, but she usually enjoys going around the neighborhood with us.

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!!!