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!