24 Stockings

I have been hesitant to update here because I dont want the girls reading the journal, but I have found a way to block the journal page and still let them check the guestbook, as the girls enjoy reading the comments and jokes to Joshua. So please, if and when you sign the guestbook, please be aware of what you say as I do not want to add unnecessary fear to the girls.

Josh's cytospin test came back showing 3 blasts (leukemia cells). They dont consider it an official relapse until it is 5.

So we wait to see if the cells multiply or hopefully they will burn themselves out! They will be monitoring him closely. For now we are in limbo land.

Sorry, I didnt update the webpage sooner, like I said I don’t want the girls worrying, but after reading the mass emails asking about Josh I figured I better figure something out.

The kids and I have been extremely busy keeping ourselves busy with holiday fun. Last year, when I was laid off just before the holidays, I was devastated and worried sick about how we would give the kids a Christmas. After much inspiration from Jon’s mother I quickly realized that Christmas wasn’t about the gifts we give to our children, despite what the little ones might think sometimes. Notwithstanding the outpouring of love and support our families showed, the kids lacked nothing (not in presents or love) and I tried to remind them the importance of family time and memories. And they learned that there really is a Santa, and he comes in many shapes, sizes and genders!

Looking back over the years, I asked the girls if they can tell me what their favorite present was. A lot of the time they were pressed to remember what they received. But when asked about their favorite memory, they each could rattle off several close to their heart.

So a tradition was born. We decided that one day was not enough and we made 24 mini-stockings and we stuff them with “activities”, one for each day. They range from baking cookies, to going to the movies; from Monopoly night, to taking care baskets to our local firehouse. Tomorrow is supposed to be “Snow Fun Day”. Hmmmm…. When I filled the stockings with our ideas, I imagined there would be more snow on the ground by now, but I think it will be enough for some snowballs or two! I just hope I don’t freeze. At any rate, we have been keeping ourselves busy and I have had little time to get on the computer. I apologize to those that sent me emails inquiring after Josh and for not answering sooner.

Jon and I are hopeful that Josh will overcome this hurdle; we are praying those stupid cells burn themselves out fast! He is a strong, brave little man. Even if our worst fears are realized, he will overcome this also! But I refuse to let my mind go there.

SO. If you would like to leave a comment in the guestbook – please do! We all love reading them, just as much as Josh loves hearing them (and as much as he likes to pretend he can read) If you are at a loss of what to say – here’s an idea:

Tell us your favorite holiday memory. One of my favorite childhood memories was made when I was about Halie’s age now. I remember sitting on our fireplace hearth singing Christmas carols united in the company of long-distance family. Before this year when the girls were asked of their favorite Christmas memory, they recalled a treasure hunt Santa left them in search of their presents. They didn’t remember what the gift was, but they remember the quest.

So share with us your most cherished recollection – we would love hearing them. Maybe it will inspire a tradition

Merry Christmas everyone! We love you all. May everyone’s season be filled with millions of memories!

The Fromknecht Zoo

Two White Blood Cells

Josh's MRI came back normal. The ophthalmologist dilated Josh's eyes and said everything looked good there, he didnt see any swelling. They are not ruling out pseudo-tumor completely, but it doesnt look likely. They want him to have a more definitive test done next week in the ophthalmologist's office, that will detect edema - no questions, but they are 99.99% sure this is not it. In two weeks they want him to see the neurologist, I'm not sure why.

There were two white blood cells in Josh's spinal fluid. They have sent this to be "spun down" (cytometry) so they can more closely look at what kind of cells they are and check for blasts in the WBCs they found. But the results of that are not back yet, and she didnt have an idea on the time frame for me.

Other than that Josh is being discharged, with a list of things to watch for, give Tylenol as needed but not more than two times a day, etc, etc.
Guess this will be a busy month for us after all... and I thought we were free until after Christmas. Ha!

Oh well... the worst part is being in limbo land, but other than that Josh is feeling well. Especially now that the fluid pressure has been released. He was like a new man yesterday. Really full of spit and vinegar - flirting with all the nurses and cracking jokes. So unlike his shy self. It was hilarious to watch and a much needed comic relief! I should've had a tape recorder!
Thanks to everyone for your thoughts and prayers... We love you all!
The Fromknecht Zoo!

PS. the girls are ecstatic that we are coming home (probably more so than Josh - who loves having free reign over the TV ) Kenni said we are just in time for tomorrow and our new-found advent-style countdown tradition. I almost forgot tomorrow was the 1st already. Where has the year gone???

Josh in the Big House

Just a real quick update, because my laptop batteries are low. Josh was admitted to the hospital.

He had his spinal tap and they discovered the pressure on his spine/brain (CNS Fluid) is double what it is supposed to be. So they have admitted him to find out why. Dr Wollman says the probabilities are either a CNS relapse or a pseudo-tumor.

Josh will be heading off to have a MRI in a little bit. All his chemos have been put on hold for now. If all goes well we will be released tomorrow.

Hopefully we will find out the results of the spinal tap before we are discharged. Please, continue to pray for clean results.

Love the Fromknecht Bunch!

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.

Five Little Joshy’s Jumpin Off a Tree Stump

About a week ago I did this big ole update... Well it took me over 45 minutes to type, and by the time I hit the “post” key the page had timed-out and I lost everything.

Figures!

Usually I type everything up in WORD then copy and paste it into the browser exactly for that reason... but for whatever reason, probably because it was late, and I wasn’t thinking straight… you know.

Anyway - let’s see if I can recap some of that.

But first -- yesterday we had a quick trip to the ER. Well... maybe not so quick - afterall, it was an ER, on a holiday - but quick(er) than some of the other poor people in there. We were cooking out yesterday and Josh was playing in the back yard and our little Spiderman jumped off a tree stump. Know where this is going yet? He split his top lip open. About 1/2” long, but deep. Required 4 stitches. Halie went with me, she felt SO bad for Josh when the doctor had to give Josh the shot in his lip to numb it. And I felt bad for her, because I know what it is like to feel helpless when Josh is screaming for you and all you can do is stand there.

The cut is on the inside, so the scar shouldn’t be visible, but we’re hoping his lip wont be misshaped after it heals. The one plus side, even though we were there nearly 3 hours yesterday, we really did get in and out. The nurses were sure to keep Josh quarantined from all the germies in there. At this point the biggest concern is infection-risk with his suppressed immune system, of course we are keeping a close eye on this. The doctor did use different stitches because of that risk. I guess I didn’t get all the details there, just that she wasn’t using the dissolvable kind and why. He’s supposed to have them removed on June 3rd… which is a Sunday, so Monday, the 4th, but we will be in Pittsburgh that Thursday, so I’ve gotta call and see if they want the docs here to do it, or just wait til the 7th. No biggie either way I guess.
Looks like Spiderman got in a little tussle with Psycho-boy (aka Nathan)

Okay, on to the last visit. Thanks to everyone for their well wishes. We made it one piece - LOL - didn’t get lost and didn’t break down! We even arrived early. However, we had an unusual visit in that there was an extremely long wait. In the two years we’ve been going, never had to wait so long. In fact, normally they call us back, check weight and do vitals then send us to an exam room. But this time the rooms were full and they sent us back to the waiting room. No matter, Josh had a good time showing Kaitlynn the fish and frog, playing the play center with her, and he even ‘read’ his favorite book to her.

When we finally did get back to a room, Josh colored some more with Kait and was excited to show her how brave he is when he gets his port accessed. He still cried a little, but I think I would too if someone was poking me in the chest with a ¾ inch needle. After the doc came in and did his thing, while we waited for the nurse to deaccess Josh, he fell asleep in Kai’s arms. He didn’t sleep on the way to P-burgh (which he always does) so he really was tuckered. As we were leaving though, Kai was carrying him out of the exam room - he woke up, felt his chest, realized he wasn’t accessed anymore, and let out a huge sigh of relief, “shew!”

LOL - sometimes the worst part is having the tape torn off and the needle removed.

Kai mentioned something to this effect in her latest guest book signing. Josh really liked her coming along. He didn’t even complain when we woke him that morning. Usually, on clinic days, he knows immediately that we are going to The Burgh just by us waking him, and he starts detesting then. But this time he was excited, totally the reason he didn’t fall asleep on the way down. We sang lots and lots of songs. How many times to you think one can sing “Little Bunny Foo Foo”, “Wheels on the Bus” and “Itsy Bitsy Spider” (his favorite song) in a 120 miles?

Speaking of singing... I know you’ve had to have heard the children’s song “Five Little Monkey’s”. You know - the one where they are jumping on the bed and mommy calls the doctor - LOL... When we were in the ER last night, Halie and I did a little parody to that song.

“Five Little Joshy’s Jumpin Off a Tree Stump”

He said he wont do that again! But then today I caught him trying to climb the fence to get to the neighbors’ yard.

Ha! Guess I can count myself lucky that in the past 16 years, this is the first time any of our kids have ever needed stitches (aside from Josh’s surgeries). Knocking on wood that it’s our last!

Funny though... if I was a gambling man, I woulda bet on Nathan being the first to break that record.

About the counts, they were high again, and despite the NP’s warning last month, the doctor decided he didn’t want to raise his meds just yet. I get the impression that they have been raised so much already that he is worried about going too high and risking toxicity. So, let’s keep our fingers crossed for this months counts to come within range.

But again... another good thing... with the high counts, he is able to fight infection a little better, which is a good thing considering...

OH - I almost forgot - thanks to everyone who left messages to Halie in the guest book. She really got a kick out of reading them. The girls and I check the site often and read the messages and jokes to Josh. A funny side note, my cousin left a message then called later that night. When Shelly asked what Halie wanted for her birthday, she got all tongue-tied, put the phone to the side and whispered to me if it was alright to “tell Sissy”. LOL… She has been saving to buy a new bike (since hers and her sister’s were stolen off our front porch last summer) and was modest to ask for money instead. Guess you had to’ve been there, but it was cute. Ain’t that right, Sissy?

Happy Memorial Day to all. This is a bitter sweet holiday for me, as it is the weekend that we sat on pins and needles knowing that the next day (Tuesday) Josh faced the possibility of a cancer diagnosis. (Kinda ironic he had an ER trip on his anniversary weekend). Can hardly believe it’s been a full two years already! I can only hope the next year and some odd months goes just as fast!

I married Mario

Hard to believe a whole month went by already. Got a call the other day confirming Josh's appt this week and I had to do a double-take.

Been meaning to update about Josh's last visit, and here his next visit is tomorrow.

The visit itself went fine. Different set of anesthesiologists and doctors (because it was on a Friday) but things went smooth. Weird, cuz they have a different way of doing things (like making us wait in the hall instead of the OR recovery room) but we did get out of their faster. His onc appt went well too. Didnt see Dr Wollman (since he *isnt* in on Fridays - lol) but the phys asst is very nice too. They all are. We never complain. So his counts were high again. From my understanding, his protocol says, if counts are high 3 months in a row, then increase meds. So, if his counts are above 2000 tomorrow, well... we'll see. Of course, I was concerned that we can never get it right. That it seems we finally get them within range, and it only lasts a month then they're up again, but she said he's a growing boy. Good enough for me I guess. At least they're on top of things.

The only downside to the whole day was getting there.... IF WE EVER ARE SCHEDULE ON A VOO DOO DAY (like Friday the 13th) AGAIN - YOU CAN BE SURE I WILL RESCHEDULE!)

In nearly 2 years of driving back and forth to P-burgh, and just under 10,000 miles logged, it was bound to happen....

We got a speeding ticket.

93 in a 65 zone.

But in all fairness, it's not like Jon was driving that fast the whole time... he was passing a semi, and it just so happened the cop was sitting right_there, just_then. The cop was nice though, considering. Woulda been nicer if he l would've just let us off with a warning, but you know, it was a voo doo day. They were all_over that day.

Let's add no more traffic tickets to our list of prayers in the remaining half of this journey.

Tomorrow I have to drive to p-burgh myself. Jon cant get off work, so Kaitlynn will be my chaperon. But this is the _first_ time I will drive this myself. Before, if Jon couldnt make it, there was always someone to go with me. So I guess you could add that to your list too - please.

Anyone who knows me well knows - I *HATE* driving - with a passion. Especially long distances. Dont know why, just rather be a passenger. So, even though we've made this trip many many times, hope on this trip that the car doesnt break down, or I dont get lost - LOL

...and let's hope his counts are in a better range. Or, let's pray that the doctors adjust his meds perfectly this month.

OH - and P.S.

Tomorrow is Halie's 12th birthday. If you'd like, you can leave her a wish in the guestbook. I'm sure she'd love to read them. This is her last year in the PRE-teens. She's excited!!

Super Heroes meet Super Heroes

We're Baaa-ack!

What a vacation, almost seems surreal! It was the fastest 10 days of my life I think. But the kids really had an enjoyable time. The Village was the greatest! What a beautiful place. You can imagine that I took LOTS of pictures, between 150-300 a day! I will work on weaning that number down and creating a slide show for those that are interested. Maybe I can enlist the help of the girls.

In the meantime I will post a few here to hold you over.


The first park we went to was Universal's Island of Adventure and the people there were SO wonderful. Someone must've noticed the kids' shirts because they flagged us down personally for this private meet. We werent even there an hour when a lady stopped us in the 'streets'. It was very nice. As predicted Josh was shy. Nathan was the first to go up to the characters. It wasnt until after Nathan got his hugs that Josh thought it was safe. LOL

There's another pic where Spiderman jumped up on that column on the left of the picture and just *stuck* to it... and we got a shot of Josh standing under him trying to stick himself. I'll post that one later. Also another that i just adore of Joshy hugging Spiderman.

Between the 7 parks we went to them all but Epcot. Their favorite were both the Universal Parks. Even more than Magic Kingdom. Animal Kingdom ran a close second... or would it be third?


I liked Seaworld, but it was SO packed and we missed the Shamu show, and the boys we're just exhausted from the day before it just was a trying day.

The kids met TONS of characters, including the Power Rangers, Spongebob and Barney (lol). They met about every one they wanted too, well, except for Scooby Doo as Josh was quick to tell me. Dont know where ole Scooby was... but I think he was quick to get over it

Part of me felt a little guilty before this trip happened. Someone earlier had made a comment that they didnt think Josh was 'that sick' to get a Make-A-Wish trip. Perhaps this is the reason I procrastinated planning this trip and had such a hard time getting in to it. I didnt want to think I had a child sick enough to qualify for this trip either.

One year and ten months into Josh's diagnosis, things have become so routine and have become a lot easier than in the beginning. Maybe it isnt that it's easier. It's just that we've learned to deal with things better. We no longer have to crush Josh's meds and disguise them in syrup to get him to take them. He not only swallows them on his own, but he will come to us and tell us when he's ready to take them. He knows he takes 8 pills on Thursday nights. He knows when he's on his steroid pulse and has to take that extra morning pill. He even can tell me when he's running a fever. One night the boys and I were up in the bathroom brushing teeth and getting ready for bed, I gave Josh his meds and Nathan wanted to know where his pills were. Josh looked at Nate and said, 'no Nay, I have Cancer, you dont want to take these pills'. We've never told Josh (directly) that he has cancer. It's hard to believe that my little boy is only four, sometimes he seems so grown up.

The realization to me - that Josh deserved this *wish* - that we all deserved a little distraction from the last 2 years, came the night before we left and Josh was sitting on the bed while we packed the bags. He asked if he had to go back to the doctors now.

Makes my heart melt. But he is such a trooper. I am awed by my little heroes every day! All the kids. Kaitlynn for being such a grown-up, mature mini-me. Halie and Kenni for understanding and dealing so well with everything we've all been put through and for being the greatest helpers. And even little Nathan, the little Imp that he is, for being our comic relief when we need it.

So the picture at the top of the page says it all. 10 of the most perfect Super Heroes!

Can you name them all?

the countdown

Okay, this will be brief, I swear. I've been meaning to update several times. I lay in bed at night and think of a million things to write but when to get to them is another story...

If only I could get that brain-to-keyboard up and running.

All's fine here. The weather has been warmer and the boys are enjoying that already.

At the end of this month we will be leaving for Josh's Make-A-Wish trip. He wants to meet Spiderman. We will stay at Give Kids the World Village, while we do the
Disney thing.

Another thing I need to put on my to-do list. Usually I am a total planner. Ask anybody that knows me. But for some reason I cant get myself into this one. And we're less than 3 weeks away. So far we know who's going to watch the dogs and that's about it...

I heard that the Village was an adventure all of it's own, so we requested an extra 3 days there so we will have enough time to dedicate to the village and the parks. MAW takes care of the airfare, but we need to get a hotel for the extra 3 days. But I still need to figure out where to stay. Anyone have any suggestions????

I'm surprised how excited Josh is already. The other night Kaitlynn, Josh and I were playing around in bed and out of nowhere Josh said he couldn't wait to meet Spiderman.

And once we were sitting at the table coloring and Nathan was saying how his favorite color was 'lellow' and Josh said that his was red and blue - like Spiderman's. And I asked Josh if was going to tell Spidey that that was his favorite color, and Josh just sighed and said, 'Moooooooom, you know how shy I am!'

LOL

I told him to just pretend he wasnt shy.

We'll see... I predict he hides his head in my leg!

Oh well... just a quick shout out. I'll try to come back sooner next time.

Too Toxic?

1 year 7 months and 21 days since diagnosis. Since that date 19 children from my Childhood ALL (acute lymphocyte leukemia) support group have relapsed.

19 children in 20 months.

8 children have passed away. Including one over this weekend.

Clare

Isabel

Alex

Ray

Brad

Nick

Cam

Donny

7/23/99

5/8/99

3/20/89

1/9/99

11/21/96

1/27/00

10/29/91

12/9/04

9/29/05

11/20/05

12/15/05

4/29/06

5/19/06

5/25/06

9/2/06

1/20/07

Most of you probably remember me posting about Clare. I was so devastated then. She was the same age as Josh when she was diagnosed; she was on the same protocol Josh is on now. It was the first death I seen from this awful disease. 8 children - and a year and half later - it doesn’t get any easier. Donovan was barely 2 years old. He fought a HARD battle nearly his whole life. He was just over a month when he was first diagnosed. Baby D and his family used to live in Indianapolis, but moved to North Carolina over a year ago when Donny underwent his Cord Blood Transplant at Duke. Baby D and his family are HUGE Colts fans. I sat on the edge of my seat tonight as I watched the second half of tonight’s game. I believe the Colts had an extra player pulling for them tonight from the sidelines!

Since our beloved Steelers aren’t in it this year… I gotta say – GO COLTS! GO! Let’s go win that Super Bowl! And if you'd like to leave a message for Melissa and their family, follow this link.

In other news: I haven’t really updated cuz honestly, I didn’t want to “bug” you guys so soon

But now that I’m here…

Josh’s last visit went extremely fast. Considering… It was a spinal week, so we left Erie early (read: 4 a.m.) but he was the first patient on the OR roster. Had a new anesthesiologist... and don’t know what he did different this week, but Josh woke up extremely fast this time and was in wonderful spirits. Ate not only the one [required] Popsicle but asked for another! Imagine that… and this was BEFORE his roid-boy week.

So we made it up to his clinic appointment a whole HOUR before it was scheduled… in comparison, usually we are late to the doctor’s appts on spinal weeks. Here we hit a little snag. I guess Joshua is showing some toxic side-effects from one of his chemos, Vincristine (aka: mean christine). So the doctors had to decide on whether he should get this month’s dose. In the end they decided the benefits outweigh the risks and he received his IV-chemo as scheduled. Now, I guess I should also mention that Josh’s counts have been doing EXTREMELY well. Too well actually. Remember when I’ve told you that in order for the chemo to do its job it kills the cells in the blood – the good with the bad? So another of his chemo doses, the one that he takes orally every night, was raised. That and they raised his weekly oral Methotrexate dose. Yet another chemo. These are the little orange tablets Josh _hates_ taking, there are 5 of them and the part he dislikes is having to swallow so many. After the first few he tries to convince me he’s had enough and is done. Anyway, he now has to take 6… so far he really hasn’t noticed the difference ;-) It doesn’t hurt that I try to sneak in two at a time… ;-)

Doesn’t really make any sense does it? How one chemo can be too toxic, and the other not strong enough... Guess that’s why I’m just the willy-nilly mother sitting not-so-patiently on the side-lines. Although, sometimes I do think I deserve an honorary MD badge!

And to wrap things up, Josh will go back to Pgh this week to have some test done on his heart to make sure there wasn’t any damage done caused by yet another chemo, Doxorubicin (I hope I spelled that right cuz I don’t feel like looking it up at this hour) that he had way back in his Delayed Intensification Phase. ***Remember Ding Dong D.I. is done!?

So that’s it. Two chemos were raised; we have an echo this week and go back in two weeks for our regularly scheduled chemo appt. No spinal though… just “mean christine” and counts.

Until next time… Love from the whole clan!

Be Better Tomorrow

Two updates in one week, someone mark it on the calendar! Many of you probably haven’t even read yesterday’s update yet. Don’t worry; you didn’t miss much, just a bunch of wee-morning mush.

So it’s 5:00 in the morning. Again I can’t fall asleep. Not like I haven’t tried. The house is silently still, all but the sound of Jon’s heavy breathing, sleeping in the other room on the couch. I went upstairs to bed once. I just laid there, my head rushing with a million thoughts. I miss mom. I keep picturing her there, sitting on the edge of my bed. I can smell her perfume. I can still hear her words.

Few of you may know October and November were rough months for me. One day in particular, just before Thanksgiving, I didn’t even want to crawl out of bed. Jon couldn’t coax me out, the boys were busy with their play, and the girls were in school. But Jon, he had went to his parents house that morning, and I imagine he told them I was feeling down, and mom, despite how she must have been feeling herself that day, came to our house, made the grueling ascent upstairs (bad knee, chemo pains and all) and gently convinced me everything would be okay. And she repeated the story she told me several times before of a conversation Josh and her had on the phone one day, and Joshua said to her “everything will be betta' tomorrow”. I don’t think it would’ve mattered one bit what she said to me that afternoon. She could’ve told me that she would beat me over the head with her cane if I didn’t get up. Just the mere fact that she was there, just her presence sitting there with me on the bed, knowing what her and Josh and inevitably others have had to endure, made all my sorrows seem trivial in comparison. And deep down, I already knew it would “be better tomorrow”. It always is.

But it was nice, just knowing that she was there for me. That she would always be there for me. Even now, through my tears, I can smile, knowing she is still here for me, even if only in our memories.

So I’m lying in my bed, and my thoughts drift from her sitting on the edge of my bed to us sitting in her living room. It’s just before Christmas. Jon and dad are in the kitchen hamming it up. Mom’s showing me a picture book Aunt Louise sent to her. We laughed at some of the pictures and the narrations she put with them. In particular, one of mom squeezing Aunt Carol’s arm when they were just babies themselves. I can still imagine her far off look as she remembers the moment.

Now my thoughts drift to mom lying in bed, it’s few days before Christmas. And now I’m sitting on the edge, and I’m trying to convince us both that “it will be better tomorrow”. She’s telling me a story about Aunt Kay. They were on the phone earlier. It’s a story about tires. She’s barely able to focus on the words to tell, but you can tell this story is special.

Finally I decide to just get out of bed. Perhaps now, with my memories etched in this journal, I can leave them for another day.

Yesterday I was going to post about Oreo cookies. Joshua’s favorite. I can’t tell you how many times mom and dad would stop by just to drop off a gallon of milk and a package of Oreos. Heaven only knows, they never lasted through the day, but the kids (and dog) enjoyed every last crumb. The other day we were walking though the store, and we passed an isle that had Oreos displayed. They were on sale.

LOL

I couldn’t help but smile, point them out to Kaitlynn, and throw a packet in the cart. To Josh from Grandma.

Tomorrow Josh has an appointment in Pittsburgh. It’s a spinal month. We already know it will be a long day, but it’s almost scary how routine it seems anymore. In an answer to one of yesterday’s questions, this is his 15th spinal tap. Intrathecal with Methotrexate they call it. Five of those spinals were postponed to other dates; due to low counts or the multiple blood infections he had the beginning of last year. But he still got them. Fourteen down – only 7 more to go. He only gets them every third month now. Almost seems surreal. We’re in the single digits now. Really is hard to believe that we are halfway there! As my best friend, Alina, has been telling me all along, look for the light at the end of the tunnel. I think I can start to see it. Not that it doesn’t scare the heck out of me, or that I’m afraid to jinx myself, or that I don’t worry about side effects he might have to endure in his future, but I can see it. I can see that light.

It’s now an hour later… I sure know how to ramble on. As mom could talk about nothing forever on the phone, my fingers can do the same… I’ll be on again. Perhaps Friday, with a day-after report.

With all our love ~ sixteen-ever!

Halfway to the Finish Line

It's past 3 in the morning here - it took me WAY longer than expected messing around with special effects and *junk*

SO

This will be short.

Maybe tomorrow I will find some time to update further.

Maybe I'll update it before anyone even reads it

If I don't --- leave a message in the guest book that tells me. I see the counter climbing, but I swear half of them just might me me - well maybe not half. BUT, I was going to write something to the effect that it was getting close to 7600 visitors. If you were the magic number sign the guest book. But all my messing around and *I* ended up being the 76th-hundred.

*shrugs*

Anyway

My update was going to include something about being halfway there.

1 year, 7 months, and 7 days ago our world (as we knew it) was turned upside down. We found family and friends where we didn't know we had it. And our lives and routines changed dramatically. Sacrifices were made and bonds were formed. But most of all, we learned to put things in perspective. We work to remember what is REALLY important in each in every day. I will be the first to admit, sometimes it's a struggle, but we get there. It's all about each other, and making the most of every moment. It's hard to believe we've made it this far already. Much love to everyone that has been a part of our 'moments' even if it was to sign the guest book or to send us a quick email or card to check in on us. Or even the most powerful prayer. We really are feeling them. I don't know how else we're making it through these days sometimes. We draw strength from the outpouring of love and encouragement you all have shown!

Well, I guess this update took a bit of a turn somewhere. I suppose I get a bit sentimental and ramble on in the wee hours of the morning. That's probably why I'm still up. Better to be sitting here doing something half constructive than to be lying in bed typing imaginary emails that I never remember in the morning anyway.

BTW... if anyone know of a device that can transfer thoughts into emails... drop me a line to let me know. It sure would make life easier for me... and a few others I can think of too

Tomorrow... maybe I'll get on here and post a couple facts. Since it's the half way mark, I was going to give some material that will be tested on 1 year and 7 months from now...

Just a sneak preview:

Can anyone estimate how many pills Josh has had to take in the last year and a half?

or how many spinals he's had to endure?

I'm going to add it all up. I'll post soon. Come Josh's OT party, believe you me - there will be a test

With all our love and appreciation
~ The Fromknecht Family

Jon & Marian,
Kaitlynn, Halie, Kennidy,
Joshua and Nathan