Strength in numbers

I've contemplated writing this update because I dont want to cause any undue worry, but I've finally decided that there is strength in numbers and I am hoping to get a little of this worry off my chest with each tap of my fingers on the keyboard.

I have butterflies in my stomach. For the past week or so, Josh has been having on-again-off-again headaches. That in itself might not give me too much worry, but he has also been having vision problems which he will describe as 'blindness', but try to get a 5-year old to describe what that means! He says it means he cant see TV for a minute. He cant clarify if it is blurriness, blackness or dizziness. He has also complained of noises hurting his ears. On top of all that, and this might be purely coincidental, we found a wart on his finger the other day. Which could be from being immuno-compromised, but his counts normally run high.

Josh was scheduled to go to Pittsburgh tomorrow, but after talking to his doctor, they have postponed his appointment until Thursday so that they can schedule him for a diagnostic spinal tap (no chemo). They will be checking for a central nervous system (CNS) relapse.

As I said earlier, there is power in numbers, so if you feel inclined, can you please pray for a clean spinal tap this coming Thursday.

We appreciate the messages left in his guestbook, so take a minute and say hello or leave a prayer. Josh does love us reading them to him.

I will keep you updated. Love you all!

Bumper Sticker

I have designed a bumper sticker for childhood cancer and entered it in a contest. My goal is to win 2nd place which is awarded to the entry that gets the most internet attention (i.e. the most hits, the most links to their webpages, etc.) The prize is $100 in store credit which will then be used to purchase these bumper stickers to handout and spread awareness. Do I have a shot at winning? Who knows but it's worth a shot, and I had fun making it! But if I do - I'll be mailing a sticker to anyone who wants one

Click here to check it out if you'd like.

Love ya's

M.E.

Autumn Reflection

I was born a Navy Brat. As such I have many memories traveling in a car. In particular, I remember road trips, annual vacations to visit aunts and uncles, grandparents and cousins. Most of our trips took place at night, they began in autumn-like weather and ended with my brother and I waking up to a blanket of snow as we felt the rhythm of the car shift from the constant hum of the highway, to the stop and go bustle of the city. The inevitable answer to the childhood cliche, 'are we there yet?'.

Every so often, when on a long stretch of road lined by rows of trees, the urge to journey will tickle my impulse. Especially when my father lived in Virginia. I can remember many last minute trips that spawned from that yearning.

Last Thursday, under the cover of darkness, we loaded Josh in the car for the two and a half hour trip to Pittsburgh. As we pulled on the highway and I seen my first green guide sign, reflecting in the headlights of the blazer, I realized my sentiment for travel has been tainted over the past two years.

Now, my thoughts go to the day before Joshua was diagnosed. That first two hour trip full of questions of the unknown. Now, the memories are replaced with spinal taps and IV drips. But despite the miles logged on the odometer, I still harbor a few good memories. Josh memorized many nursery rhyme songs to the same hum of the tires I listened to 30 years earlier.

This month’s visit was most like all others. It was a spinal visit. He had a new LP team, which didn’t phase Josh in the least. He has grown into the most personable little man over the years. Already. Now that he is five, he was impressed that he graduated to the “big boy bed” as they pushed him to the IR in it. I was inspired as the nurses accessed his port this month and nary a sound escaped his lips as the needle broke though his skin. It was a bitter sweet moment. Blessed for the day he no longer agonizes over the anticipation but wrought over the thought of him learning it.

Josh has a simple pimple-like sore on his lip this month. Maybe a very small canker sore. Just when our routine seems so regular that, aside from the nightly meds and familiar doctor’s visits, it is sometimes easy to forget that we are still battling cancer. Something as small as a pin-head-sized mouth sore can yank you back to reality. I never gave it a second thought. But two different doctors had to examine it, a nurse was sent to culture it and he was sent home on an additional antibiotic to add to his medicinal artillery. Not that it phased Josh, he was just eager to be released so that he could finally eat for the day.

On our way home, now in the warmth of the sun magnifying through the windshield, I notice the leaves on the trees once again morphing to their fire-like scape, preparing for their fateful decent to the earth. And I realize…

This is the last year I shall witness this magical mutation while Josh is on treatment. This time next year Josh will experience his own transformation.

Living his life as a normal 6 year old boy.

"Molecular" Video

Okay, if you can believe it - I am betting that *this* post will be short and sweet.

A new video was introduced to me by way of my support group and I just had to jump on here to share it with you.

The kids talking on here are so cute. I had to watch it a couple times just to hear the little girl try and say "molecular"

Looks like September is turning out to be a busy month!

Kindergartener No More

Today in perfect timing with Childhood Cancer Awareness Month our local Make-A-Wish chapter invited us to Splash Lagoon (an indoor water park) for the evening. The kids really had a blast. Even Nathan-the-scaredy-cat braved the tall water slides! ...and liked it

Josh tired out early though and we did end up leaving an hour early, but the rest of the kids agreed they all had fun and it was plenty of time to transform them all into prunes!

In School News: our kindergartner is a student no more. After his most recent trip to the ER, and after much debate with his teacher and principal we have decided to pull him out and wait until next year. His teacher, is a VERY understanding and wonderful teacher, but she said she noticed that Josh was tiring out very easy. Half way through the days she would allow him to put his head on the desk, and she was willing to do this for the rest of the year... but Jon and I decided since he barely made the cut-off date as it was, and in hopes to prevent any undue illnesses, it probably is best if we wait. Surprisingly, Josh was ecstatic. In fact days before he made a comment that he couldnt wait until he was 6. When we asked him why he replied, 'so I dont have to go to school anymore...' That seemed deja-vu-ish. Did I tell you that before?

We're still working on things at home, but admittedly, as smart as he is, his attention span does need some maturing.

In Awareness Month News: This coming Friday CNN will air a childhood cancer special featuring the video that I wrote about two posts back. This is exciting news! A lot of positive feedback has come from that video already. In the end, we hope our representatives will stand up and take action!

In 'other' news: My mother had a colonoscopy last Friday, in which she had several polyps removed. She should be hearing the results of that within 7-10 days. I know I have come here in the past with prayer-wishes for my mother-in-law and for children that we've never even met, but here I am again. Please pray for a clean biopsy results. Also, I have an MRI scheduled for tomorrow to be done on my brain. Gonna see if they can finally fix it - LOL. Just trying to keep things light. Seriously, I have been having trouble with dizziness and uncontrollable muscle twitches over the past month so my doctor ordered it to rule things out. I'm praying they have good music while I'm in the tube and that I'm half as brave as Josh has ever been.

...and with that I will bring this to a close. I came here with a quick update. Well... we all know how that goes. I'll be back again before the end of the month. Next time I will bring details regarding the CNN show. Also, in case some of you live by a Chili's - just a reminder that they are having their annual Create-A-Pepper drive and on Sept 24th - 100% of their proceeds will be donated to St Jude's!

P.S.
GO STEELERS!!!!

Crazy Cancer Mom

September is Childhood Cancer Awareness Month

I dont know how it works, but after such a long reprieve from ER visits now we are on a roll again. Friday I had to take Josh to our local hospital due to fevers. It was just a routine trip, but nothing 6 hours cant cure. After x-rays, blood work, urine cultures, a round of IV antibiotics we were released on good behavior He was on a parole of sorts.... meaning his freedom is dependent on his blood cultures, but I am confident that the fevers stem from funky kindergarten germs. So far so good.

Friday night Jon and two of the girls played in an exhibition game for a Make-A-Wish tournament this weekend. All three teams won. But when Jon went to leave that night he discovered that someone slashed our car's tire. After all we do for the softball league it is disheartening to think that someone would do such a thing - remember - I am now stranded at the hospital with Joshua. Not to mention it is now midnight and Jon has 2 of our kids, plus one straggler with him.

I ended up walking home from the ER, carrying a 40-lb feverish child in the middle of the night. A one point a car full of ignorant-probably-drunk-girls drove by yelling out the window to "go home and put my kid in bed". I burst in tears right there. On top of the slashed tire, I now had to worry about what people thought of me carrying my son halfway across the city in the dead of the night. I was bawling so hard to had to sit down. Right then Joshua said to me, "it's okay mom, I can walk now"

Which of course only made me cry harder.

After our hour-long walk, I was all cried out and now fuming. How dare someone judge me. Not one person even bothered to stop and see if we were okay. Then to think about the car and our so-called softball family.

After a good night's sleep, I've come to the conclusion. Why let one (or two) bad apples spoil the whole bushel - so to speak. This too shall pass and what doesnt break you will only make you stronger.

Okay enough of the cliches. I love my kids and my kids love softball and that's why I do what I do. As tiring as it sometimes is. I love Joshua and I would carry him on my back in a blizzard to Pittsburgh if I had to.

Let me say again. September is Childhood Cancer Awareness Month, and in honor of that I am going to try and post every week this month. With some link or another. Most of you know I am part of a Childhood Cancer Support Group. We are a group of parents and grandparents, aunts and uncles, brothers and sisters, neighbors and friends who all understand what it is like to hear the that one word that you can never in your life mute again. A friend of mine has started a movement. So far it is in it's beginning stages. She no doubt can get overwhelmed in all her efforts so far. After my night Friday, I was reminded that we cant give up, and want to support her in any way I can. Her purpose is to gain awareness for childhood cancer. Why? For the purpose of future funding and research! I am sure everyone reading this knows what a pink ribbon represents. How many of you have bought a pack of pink Tic Tacs? Cancer aside - who here knows who Jarrod from Subway is? Now... who knows the color of the leukemia ribbon - or the color of the childhood cancer ribbon? And I know there are a lot of crucial causes out there cancer aside: Diabetes, Autism, AIDS... and unfortunately the list is too long.

Alicia's site is sure to raise awareness. She has pledged to PUBLICLY lose 100 pounds in honor of our children and Childhood Cancer Awareness. The more public she goes, the better her chances are of picking up a giant sponsor. Jenny Craig, Weight Watchers, Subway you-name-it...

Who hasnt seen Kirstie Alley in a Jenny Craig commercial??? Now - could you imagine Kirstie's salary for those commercials going to Childhood Cancer instead?

So here's the site - Crazy Cancer Mom

There are a lot of pages to wade through already, and it will no doubt will take you a few visits to get through all that is written there, but her Blubber Blogs are hilarious, and the Crazy Cancer Mom's Kids page is in it's infant stages, but what she writes on her opening page is so heartfelt. Even if you dont read a word - do one thing - Pass it on. Let's get the word out. She is our next Jarrod!

Josh - the Super Star!

September is Childhood Cancer Awareness Month.

I had other topics in mind for today's post, but in light of a recent video that has been released featuring, in small part, Joshua, I decided to focus today's blog on awareness.
According to the Candlelighters Childhood Cancer Foundation, as recently as thirty years ago, few children with cancer survived, but now almost 75% can look forward to being cured.

However, treatments can come at a high price.

While there are, of course, immediate effects, there are also late effects including learning disabilities, secondary cancers, deteriorating bones, collapsing joints, loss of fertility, heart damage and post traumatic stress disorders in the survivors and their family.

In the video you will see some statistics, and feel the purpose of this campaign. It speaks of 400 children in a year's time that wont be placed on a trial due to lack of funding.

Joshua is one of them.

In fact, just recently there has been debate about Joshua's protocol not being as effective as others. Not something a mother wants to hear. Only time will tell. And for a parent of a child with cancer - time is everything!

First Day of Kindergarten

One of my earliest memories is my first day of kindergarten.

... I think I cried.

Yesterday was Joshua's first day of school and when I walked out of that classroom I couldnt help but bawl again. I tried not to, and I definitely didnt let Josh or his classmates see... but I couldnt help it. I can hardly believe he is old enough to start school already.

This coming from a mom who has a daughter preparing to take her drivers test...

How can it be? My oldest daughter getting her license and my oldest son starting kindergarten - all in the same week...

A friend of mine said, "just wait til Nathan starts, you'll really be sad then"

LOL - she dont know Nate too well does she????

hehehehe

Speaking of which - Nathan didnt seem to miss his "brudda" at all. But he was happy to see him home, especially since he had an extra pack of crackers

It was a nice distraction running Kait all around the city, kept my mind off my half-empty nest. Before I knew it, the time came to pick up our babies. Josh walked out the kindergarten door unscathed and in all in one piece, smiling ear-to-ear.

When we asked him how his day was his first reply was, "we didnt get to play"

LOL

he would say that.

He had his eye set on the tool bench in the back of the room.

Back to my first day of school. I remember our play area was in the back of the room too, and my eyes were on the little wooden kitchen set. I can still see myself standing there. I cant remember my teacher's name, or any of my classmates... but I can still picture that kitchen set.

We asked Josh if he met any friends... he said he wanted to talk to "James" but James didnt talk to him. I asked him what he said to James, and he replied that he didnt say anything. LOL

So I pried for more details. I wanted to know all the details of his day. Who did he sit next to? Joshua's desk is up front by the teacher's. He sits next to Paige. She has hair like his. I thought he meant she has blond hair, but no - he meant she has short hair. Doesnt that just make you smile?

More interrogation: Did you sing any songs? Did you play any games? What did you learn? How was lunch?

He's not a very good narrator, but he did tell us about the Penny Game, and how he wanted to pick pink as his favorite color - to Jon's dismay

For snack "the helper" gave him golden fish (gold fish crackers). I explained to Josh "the helper" is the child that brings snacks in for the day, they are the designated teacher's aid for the whole day, and soon enough it would be HIS turn to help to. He is already planning on what to take in on his day.

When we got home he couldnt wait to show us the fish he had made out of a paper plate and empty his homework folder which was simply some emergency contact forms. Homework for mom... just what i wanted. In triplicate.

I thought for sure Josh would pass out early last night but he surprised me and made it through the whole night.

One thing though, kindergarten sure makes a hungry boy. Despite a bowl of Applejacks before he left, a snack and a full lunch he came home ravished. He said his tummy was "grumbling"

This morning he didnt want to eat breakfast and I had to remind him about his "grumbles" yesterday. He decided he could eat a cereal straw with some chocolate milk.

I imagine he is at lunch right now as I type. I packed him a surprise today - a Dim Dim (Slim Jim).

I cant wait to hear his stories today. Tomorrow will be his last day this week as Thursday he goes to Pittsburgh already.

Seems like we just went.

It's supposed to be another spinal this month to make up for the one he missed. Two in a row. Good thing he has a long weekend to recover.

I hope everyone has a nice Labor Day weekend. Halie won a large Mum plant from a Chinese auction on Sunday and she wants to plant them at Grandma's stone this weekend. The boys like to go to the gorge. I think we'll make a day of it.

The girls made a slide show of Josh's first day... so without further ado:

The big 0-5

Joshy's now 5 How the years quickly passed,
Our little boy has grown up so fast.

Oh how we love him, we're proud of this boy,
Each moment we spend is a lifetime of joy.

We'll sing Happy Birthday, his friends will be there,
On the candles he'll wish and the frosting he'll wear.

...time for the paddlewhack

HAPPY 5th BIRTHDAY JOSHUA

p.s. by law of your sisters

www.myspace.com/our_joshy

The thickest part of the book

***Update by popular demand***

So I guess it really has been awhile, but I wasnt sure anyone was still reading this despite a select few - especially those that sign the guestbook ;-)

And Marian (merjer) I will be making Josh a book of all the jokes in his guestbook, he really does get a kick out of us reading them to him.

First I have to let you know the girls have made Josh his own website, www.myspace.com/our_joshy, if anyone is interested you can check it out. It's a collective effort from all three of them, but it still is a work in progress.

Next I have to say things are going pretty smooth here in the Froggy household. Softball season has officially ended and although we will miss it - it sure is nice to have time enjoy other things. Cant believe summer is almost over already!

Moreover - I cant believe my baby is going to start kindergarten this year. Already? Where has the time gone? Really. So Josh is excited. Excited to be turning 5 in a few days and excited to be starting school. I'm excited for him, but cant help but be worried about all those germies in there. I know he'll be fine. He is so smart and so ready!

His last two visits to P-burgh have been routine. He did have his spinal postponed due to clinical-scheduling errors, but he should be back on track within the next two months. Also better news is that his ANC had FINALLY fallen within range! Last two visit have been just under 2000. I'll take it.

Can hardly believe that we are now exactly one year from the finish line! Have you ever picked up a book to read and thought about how much you had to read still? Did you actually do the math in your head to compute the number of pages? Have you ever picked up that same book upside down, felt how skinny the pages were on the wrong side of the book and thought, 'hmmm, sooner or later I will be to that side'? That's kinda how I feel now. We're over 2/3s of the way now. The thickest part of the book is behind us. After the first two years, this last year should be a cake walk.

Let's pray that it is.

I can hardly believe that in less than two days he will be 5 already! I strain to think back to when he was first diagnosed, not yet even 3... seems so long ago. I remember having to crush his meds, diluting them in syrup, and having to bribe him to take them with the reward of a 'water gun' fight afterward. The water gun itself actually being an over-sized medicine syringe. My kitchen floor is thankful that he outgrew that stage Now he reminds us when it's time to take his meds. At his first sign of sleepiness, he will come to us, 'is it an easy day?' An easy day is any night that he doesnt have to take more than two pills at a given time.

I think it will be funny when he starts school. Now, if we wake him up in the morning, he automatically assumes it's a p-burgh day. It will be nice when he can relate being woken up to something else.

OK, well I guess I've gone on enough. I'll try to update sooner next time (I think I've said that before). Let us know that you're all still reading.