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!!!

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.

Wednesday, August 27, 2008

Innocence of a six year old

Tonight, as I tucked Joshua in bed and laid beside him to "connect the dots" on his back, he asked me why I was always the one to pick him up from school. It's only been two days, and today Kaitlynn came with me - but apparently that is "always" to a 6 year old. Anyway, I told him it is because I miss him so much and cant wait to see him and find out how his day went. He thought about it for a couple minutes, and in the middle of me singing (no doubt off-key) You Are My Sunshine he said, "If you miss me so much, why dont you just stay there then?" I told him I didnt think they would let me, but he thinks if I ask the principal they will. Oh, I love the innocence.

The school had a fire drill today and he was excited to tell me all about it first thing. I think he was more excited to tell me that they crossed the street without holding hands! Wow, he must really be a big boy now!!

In other news, one of the first things I asked him this afternoon is if he "stayed in the green". Completely expecting it to be a rhetorical question, I was shocked to see his expression. A sly grin slipped across his face and a "how did you know?" expression tattled the reply.

On the second day Josh? Now trying to get my embarrassed son to tell me how he fell into the "yellow" took a little bit of interrogation skills with the need of an interpreter fluent in baby-babble. Newly-turned 6 year olds are very gullible, I told him if he didnt tell me what he did to warrant "a yellow" that I was going to have to turn around and ask the teacher. Flustered enough, I managed to make out something along the lines of "play fighting with his lunch box".

This morning when I woke Josh up, he confided in me that 'kool was borin'. I told him it would be more fun as they started to learn more things. Today Josh told me that they learned more about rules and how to behave. I suppose lesson #3 is no WWF or UFC at lunchtime with the other boys sengihnampakgigi

Tuesday, August 26, 2008

Joshua's [second] first day of school

Today was Joshua's first day of school - again. This time I walked (albeit reluctantly) out of the school tear-free. Not that I didnt want to. I miss him so much already. He definitely has a way of making my day.

Yesterday was the first day back to school for the other kids, but Joshua's shot records werent in order because of the leukemia, and I had to wait for the school nurse to call me to straighten that out. As soon as she began to talk to me she remembered his case well from last year and still had the letter from his doctor regarding his shots on file. Josh walked out of the school crying but we charmed him with breakfast and bribes of the zoo. We didnt end up at the zoo because it threatened with rain, but we played extra long in the playground at Mickey D's. star

Joshua's kindergarten teacher is Ms. Clara Chlebus (pron: Clee-biss although originally, I thought she said Clevis); the kids call her Ms "C" for obvious reasons. Which reminds me of when I was a Brownie Leader; I asked the kids to call me Ms Marian, because Fromknecht is definitely a mouthful and Ms F just didnt seem fitting. Ms C wears her name well.

This morning on his way to class, Josh walked down the hall to his class several steps ahead of Jon and I and marched right into his classroom un-apprehensive. He found the hook with his name displayed above it and proudly hung up his book bag complete with his PB&J lunch neatly tucked away inside. After walking around the room slyly checking things out, he sat down at his desk where his soon-to-be friends were already seated. Before I even left the room he was investigating his crayon box and studying the papers sitting on his desk. I dont even think he looked back. I could've stood in the doorway watching him all day if they allowed it. Maybe because Jon was with me this year or perhaps because I had Josh to myself an extra year, I didnt have as hard a time walking out of the school as I did last season. It was a long afternoon of me watching the clock, but Nathan provided the comic relief I needed and the minutes eventually ticked to 2:20.

When the bell rang Josh was at the head of the line and the first little one to walk out the kindergarten doors, spotting me immediately and running up, giving me the biggest hug and kiss. It brightened my day to see him so happy! He couldnt wait to tell me all about his day. I asked him if he met any friends and he told me, "all of them". He couldnt remember any of their names, but was quick to let me know he stayed "in the green" all day which meant he behaved, but one boy didnt, he went "in the yellow" and he didnt get a sticker. Ah, this teacher found Josh's weakness already senyumkenyit

Sunday, August 24, 2008

Joshua's Celebration of Life

Joshua had a wonderful time at his party, as well as everyone in attendance. It was a nice day starting with the cooperating weather all the way to the setting sun. We danced the night away literally.

Before the party birthday cards and gifts arrived from across the country; all the way from California and Florida and nearly everywhere in between! Josh just loved receiving mail and although he cant yet read, he enjoyed all the cards and saved them all!

At the party we had long-distance visitors from as close as Bolivar and as far away as Kentucky! It was exciting to see everyone, it really was a day to celebrate.

I thought the day was starting off a little bumpy because we were blowing fuses when it came to trying to cook the food - but the park manager was bribed with a some vittles and he was more than happy to fix our problem.

The girls and I spent weeks making things and getting ready for the party, in particular the piñata. What took days to create, took minutes to disassemble! Actually for mere posterboard and newspaper it was stronger than I anticipated. I would venture to guess that there were upwards of 20 kids, we lined them up from shortest to tallest (with the exception of Joshua who went first, but only Nathan was smaller) and they each were allowed 3 whacks. To the tune of "I Want Candy" steaming through the speakers, they went through the line up 2 times. A few good whacks let out a spattering of candy here and there, and we were worried a blindfolded kid would smack a candy-starved child in the head with the bat when one didnt wait for the other, so in the end we ended up ripping it the rest of the way open for the eagerly awaiting kids.

The cake was a huge hit, it really turned out beautiful, beyond my expectations. But as hot as the day was, the frosting started to melt some and was sliding off one side of the cake. But it still tasted yummy! The cupcakes were a nice addition to the cake and the kids couldnt pick them out fast enough.

Before Josh opened his presents, he presented his brother with a gift for being a "Super Brother". In the days leading up to the party, Josh helped to make and model a cape that I fashioned with a huge yellow "N" on the back. Joshy made a great model but informed me that he wished he had one with a "J" on it. Cute - so out to the fabric store I went. Anyway, there were three gifts bags on the table that didnt belong to Josh, he kept this secret for over a week! He was excited to hand them out to his sisters and bestowed upon them an offering for being his "best medicine" over the last 3 years. At this point my eyes started to leak a little. I didnt think I would cry this day, but he was so proud, and spoke so well. Kaitlynn and Halie both got butterfly rings, each in their own style and Kenni received a pair of butterfly earrings. The butterfly is a perfect symbol of childhood cancer as it represents change and hope. I Had wracked my brians in the weeks leading up to the party trying to think of something to give to the girls to let them know how important their role was during Josh's treatment, it was my friend Karen who suggested the rings and as soon as she said it I knew it was the perfect idea! It was ironic because as we drove to the jewelry stores together we speculated on ideas for the rings, but neither of us thought about the butterfly, and it was one of the first things to catch my eye. It was kismet!

Joshua received lots of cool gifts, each of which he is extremely thankful. Josh and Nathan could hardly wait to go home that night and rip open all the packages. He received lots of actions heroes, including Power Rangers and Ben Ten which was right up his alley. He also had been asking for Webkinz non-stop prior to the party, of which he received 2! One was a dinosaur who he named Cocoa who is a boy malu and the other is a leopard who he named Cappachino, she is a girl. He got a kick out of seeing them on the computer when we registered them, but last night I got a kick out of watching him take them to bed with him along with his new Spiderman afghan. If you can see the slideshow, check out the details involved. It is absolutely gorgeous. Jon's Aunt Kay and her friends from Kentucky made blankets for our whole family and you can see the time and love put into them all. Josh also got an awesome green big boy's bike. The very next day he dug out his helmet and had us push him down the street. He cant ride it on his own yet, but it's just a matter of time. It's amazing to see how much stronger his legs are getting already, what a difference from this year to last!

After he opened his gifts, we held the chemo ceremony. Karen and my mother went around the pavilion and collected all the balloons while Josh was opening presents. They tied several balloons to one of his pills bottles filled with smarties (but dont tell Josh, he thinks his chemo was in there). It took more balloons than I had anticipate to lift them off, but he was excited to have the biggest bunch - lol. So everyone else that wanted to participate in the release with us came to a clearing and got a yellow or orange balloon. Turned out we had the perfect amount. We all counted to three and after Josh released his group balloons the rest of us released ours. It was quite a sight watching them all lift off. Despite all the extra balloons, Josh's didnt raise as fast as the singletons, and briefly got stuck in a patch of trees, but they worked their way free quick enough and those pills are now gone forever!

After the balloon release, it was time to announce the winners of the guessing game. Guests were asked to guess how many times Josh was admitted to the hospital, how many spinal taps he endured, how many times he was poked, and how many pills he had to take during the course of his treatment. On the cake table was a huge apothecary jar (read: pickle jar) filled with make-shift pills (read: Reece Pieces), representing how many pills Josh has had to swallow over the past 38 months. The prescription label on the front of the jar read:

Fromknecht Pharmacy

(814) 403-9431 Erie, PA 16504

Patient: Ima Lifesaver



Qty: _____________ Refills: call anytime

Prescriber: Dr Joshua Michael

Rx # 082308

The winner of each category won a small commemorative gift (except that we left of of the gifts at home on the table...) The winner of a pin cushion and the exact number of symbolic pins went to my soon-to-be step-brother, Ray Jr. How many pokes has Josh endured over the past 164 weeks? He guessed 136, the actual amount was 134, give or take a few pokes that had to be done multiple times due to nurse error. So he was probably closer than I was... The winner of a hospital care package which consisted of a coffee cup filled with some hard candy, some spare change for vending machines, a toothbrush and a deck of cards was Jon's best friend, Jimmy. Over the last 3+ years, how many days were spent inpatient? Jimmy guessed 28, but the actual number was 43! His daughter Gabby, was supposed to be the winner of a stuffed bear with bandaids on it's back, but that was the prize left lonely at home. The question was - How many spinal taps has Josh had in the past 38 months? She guessed 20, and the actual number was 24. Finally the moment everyone was waiting for - how many pieces of candy filled that giant pickle jar. It took nearly 8 pounds of Reese Pieces minus the brown ones and the girls and I counted each and every one of them. Winning the jar full of candy was my sister-in-law, Kim with a guess of 3438. Ironically, coming in a CLOSE second was our friend, Janice, Halie's old t-ball coach, with a guess of only one more... Over the past 1146 days, how many pills has Josh taken? The real answer 3318. An average of 3 a day, which seems a lot when you consider he was only 2 when this whole thing started. Kim was pretty close, if she were on the Price is Right, she would have just missed the dual prize! My brother broke into the jar of goodies before the night was over!!

The kids rounded the night off by dancing. They danced to the Chicken Dance, the Macarena, Soldier Boy and who knows what else. I had a good time watching them and the few adults that joined in here and there had me in hysterics! All in all it was a memorable night. Thank you to everyone who made it so special, even those of you that couldnt make it - you were with us in our hearts!

Thursday, August 21, 2008

Happy 6th Birthday!

Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Baby Boy...
Happy Birthday to you!!!

I can hardly believe that my little man is 6 years old already!!! Things are in full swing here preparing for his party. He is excited - albeit a little confused blur

Last night, ironically enough, he was still up when the clock struck twelve. We all started to wish him a happy birthday and he was quick to tell us it wasnt his birthday yet. We tried to explain the next day/midnight rule but he didnt seem to comprehend - to a 5 year old - Um... I mean 6 year old, the next day doesnt happen until after you fall asleep.

But this morning Josh got a phone call from my mother wishing him a happy birthday and again he insisted it wasnt his birthday. He says his birthday isnt "for 2 more sleeps" (that how he counts his tomorrows).

You think that a growing boy would be more than willing to have TWO birthdays, but Josh is a rare breed.

He's been receiving mail all week from family around the country, from Florida to California and everywhere in between! I love to see his enthusiasm. He loves it all from the stickers you are putting on the outside of the envelopes to the cards and well wishes inside. One of the cards had a singing message inside and he thought it was the greatest thing!! I think we were singing the song in our sleep that night siul I found myself hoping the battery would go dead - LOL - just kidding of course. Thanks to everyone who has sent cards! He loved to steal the stickers off the envelopes and put them all over his body. I took plenty of pictures to share with everyone and will post them after his party. I cant believe how many of you remembered how much he enjoys stickers! I cant believe 3 years later he still has an infatuation with stickers!

For those of you that are coming to the party, see ya in two days, and for those of you who can not make it - I will be sure to write in detail and include lots of photos of the celebration!!!

31 days since his last chemo pill!!!!

Which reminds me... this months visit to Pittsburgh went well. It was weird not getting any IV meds, they even put us in a different room this month, but it was "super sweet" not having to worry about this month's side effects. Which I have to mention - Josh's appetite has already increased to much it is unbelievable. For the last 3 years his appetite has been so picky and plain, that we just got used to it being Josh - but we are now seeing him eat different things - the other night we had hamburgers and he actually ate one! It probably sounds weird to be happy your son ate a hamburger, but I love knowing his taste buds are coming back!!!

It's the simple things!

Tuesday, August 5, 2008

15 days since his last pill!!

15 days since his last pill!!

Oh, two updates in one week! Something must be in the water senyum

It was suggested that I include our mailing address for those who can not make it to Josh's party and wish to send him a card. Josh absolutely loves receiving mail, so without further ado:

2710 East Ave
Erie, PA 16504

Also if you desire, you can leave a message in the guestbook as I will be printing the messages and will assemble them in a book of sorts for Josh to proudly display at his party. We read everyone of them to him and he really enjoys getting them.

Josh worked really hard making this Voki fish. I lost count how many takes it took after the umpteenth time, between a 5-year old's attention span and Nathan the background-noise-aficionado, but it turned out nice and Josh loves it.

Anyway, Josh is having a lot of fun helping to plan his party. He hand-signed all his invitation personally. You should be getting those in the mail soon. I hope I had the right addresses for everyone. I think he's most excited about his cake - that boy loves cake! Did I tell you for Kaitlynn's birthday last month, she spent the day with her friends. When Josh asked where her cake was we had to explain to him that she was growing up and wouldnt be home. He proceeded to tell us, that we could still have cake without her, that he was home to eat it.

Fair enough - we went out and bought her (eh hem - him) a cake kenyit

Speaking of eating - it amazes me how much of Josh's appetite has come back since going off his chemo. I knew his tastes had changed, but didnt realize how fast it would return to him. The other day he was going through the cupboards looking for goodies and I had to laugh when he pulled out the coffee creamer asking if he could eat that. gelakguling

Well, I guess I've gone on enough. Thanks for listening to me ramble once again!

Marian & the Zoo

Joshua's Celebration of Life
to commemorate his End of Treatment & 6th birthday
August 23, 2008
Glenwood Zoo Pavilions

Monday, August 4, 2008

Venue for party decided

I have a couple things to report tonight.

First: The girls have made Josh a cute little Voki. If you want to know what this is, check out his MySpace page and be sure to click the play button under the fish. They recorded it with Josh's voice and it's so cute!

Second: Also on Josh's MySpace we have uploaded some pictures of Joshy's "Final Spinal". Kaitlynn was the talented photographer and Halie was the expressive author.

Lastly: The venue for his party has been decided. It will be held at the Glenwood Zoo Pavilions. Invitations are in the mail, if you dont receive them via USPS or through Email, please accept this as your invitation, we look forward to celebrating with everyone who supported us along this journey.

Joshua's Celebration of Life
to commemorate his End of Treatment & 6th birthday
August 23, 2008
Glenwood Zoo Pavilions

Thursday, July 24, 2008

No Mo' Chemo

After 1,147 days I am proud to announce:

Josh is officially OFF TREATMENT!!!

It is both exciting and scary at the same time. Josh is loving the thought of being done with all his medication and he is the first to tell anyone that listens that he doesnt have to take his pills anymore! (aside from his one preventative antibiotic)

We are having a CELEBRATION OF LIFE party to commemorate both his birthday and end of treatment. I cant think of a better way to mark the beginning of his new cancer-free life. He will start off his 6th year with a newly-energized, still-spirited, super-heroic force!

The Fromknecht Zoo would like to invite anyone who has supported us along Joshua's Journey. We want to show our gratitude for your support, every well-wish, every card in the mail, the phone calls while inpatient, the "how are you's" while passing on the street. For every prayer sent his way; they were felt and carried us through our hardest days.

Thank You!

Joshua's Celebration of Life
to commemorate his 6th birthday and end of treatment
August 23, 2008
time and place to be announced

Monday, June 2, 2008

3-yr anniversary

I guess it's about time I update this thing... I've put it on hold with the feelings I've been trying to suppress, but not surprisingly the anxiety is still there. It comes and goes, and with softball season in full swing it definitely has a hard time of finding its way into my brain sometimes, but today is a notable day that didn’t pass without reflection.

Three years ago today Joshua was diagnosed with cancer. I remember spending my Memorial Day three years ago curled up in a ball on the couch with Joshua, worried about the future as we waited for that fated oncology appointment. This Memorial Day passed without a mere thought of that anguish and now we anticipate his last chemo-day in just a few short months.

There were still blasts in Josh’s last spinal tap, but again, not enough to label it a relapse. So with his impending OT (off-treatment) date imminent, I suppose it is natural to feel apprehensive knowing my security blanket, fittingly-named Chemo, is being ripped out from under us. What will keep those lingering blasts at bay? Hopefully a lot of hope, faith and prayer!

Don’t get me wrong, I look forward to the day Josh can go to bed without asking how many pills he has to take. Jon looks forward to taking his first-born son to the lake to fish without fear of bacteria in the water. The girls look forward to owning a hamster or gerbil or (insert forbidden pet here) or bringing in a potted plant they made at school for mother’s day. Nathan looks forward to a brother who has enough energy to keep up with him (if there is such a person ). And we all look forward to being a healthy normal family and not having to plan our lives around Josh’s ANC, medication schedule or next doctor’s visit. It’s the fear of the unknown I guess. There are pages upon pages of quotes floating around on the web regarding fear and the unexpected; it’s nothing anyone else hasn’t had to face before. I suppose it helps to express every now and then, and it has been awhile for me.

Appropriately, Josh’s last treatment is at the end of July, and the following month, when he celebrates his 6th birthday, he will also celebrate being Chemo-free! As a friend of ours put it, “Goodbye Chemo, Hello Life!”

PS – Don’t you just love the new frog background? Joshua says that Grandma [Joan] will smile when she sees it from heaven.