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

We'll miss you Mom

Sorry I dont have much time to update, but I wanted to update real quick while I could spare a moment. For those of you that dont know yet, and that check our website often, it is through much sorrow that I have to tell you my mother-in-law, Joan, passed away, the day after Christmas. She fought a hard battle with ovarian cancer, and through her we sympathized just how much Josh and her have to endure. And realized how brave and strong they are!

On Christmas day, Josh crawled in bed with Mom to give her a giant frog-boy hug, and Grandma told Josh, borrowing Josh's trademark quote, "It be all better ta-morrow"

And when "tomorrow" came, at 5:45 in the morning, Mom passed on to be with our Lord, her daughter Joy, and her sister Carol.

We miss her so much already. Please pray extra hard for Jim. They were married nearly 54 years and I feel so much pain for Dad when I think of him in the house without his love.

The following is a clip from today's newspaper:

Joan Kinsinger Fromknecht

Joan Kinsinger Fromknecht, age 73 of Erie, died Tuesday, December 26, 2006 at Hamot Medical Center. She was born in Erie on November 23, 1933, daughter of the late Arthur H. and Margaret Ritter Kinsinger. She had lived in the Erie area her entire life. Joan was a graduate of the former St. Benedict Academy and a member of the alumni association. She was a member of Holy Rosary R.C. Church; the Siebenbuerger Singing Society; and American Legion Post 3771 Auxiliary. She was employed as an office worker by Millcreek Community Hospital until her retirement in 1996. Joan enjoyed gardening, crafting and e-mailing; and especially enjoyed collecting frogs. Survivors include her husband of 53 years, James Fromknecht; one daughter, Jean Short and husband Bob of Erie; two sons, James Fromknecht, Jr. and wife Faye and Jon Fromknecht and wife Marian, all of Erie; three sisters, Kathryn Gaddie and Marilyn Koehler of Louisville, Ky. and Louise Bowers of Dillsburg, Pa.; two brothers, Frank Kinsinger of Wesley Chapel, Fla. and Joseph Kinsinger of Shephersville, Ky.; 12 grandchildren; and three great-grandchildren. Joan was preceded in death by one sister, Carol Graham and one daughter, Joy Beth Jones. Friends may call at the Dusckas Funeral Home, Inc., East, 2607 Buffalo Road on Friday from 2 to 4 and 7 to 9 p.m. and are invited to attend a prayer service there on Saturday at 9:15 a.m. followed by a Mass of Christian Burial at 10 a.m. at Holy Rosary R.C. Church. Interment, Wintergreen Gorge Cemetery. Memorial contributions may be made to the Leukemia/Lymphoma Society, 210 West 6th St., Harborview House #1, Erie, PA 16507 or to Mount Saint Benedict Monastery, 6101 East Lake Rd., Erie, PA 16511.

To send condolences, visit www.dusckasfuneralhome.com. Sign the guestbook at www.GoErie.com/obits. Published in the Erie Times-News on 12/27/2006.

"Morning"

Good Morning

Sorry it's been so long since I've written, but haven't felt much up to it lately. But this morning I had a short-but-sweet story to share and thought I'd tap it out real quick before I forget it.

Another peek into the mind of a 4-yr old. Not as worthy as "Sixteen-Eva" or the poop and ear story [which] for those of you who haven't heard yet, will have to remind me to tell you. Maybe next week's story ;-)

Anyway, here it is:

"Morning"

Kaitlynn and I were up in my room this blustery morning getting ready for the day. Kai was telling me her plans for the day and I was sitting on the edge of my bed, when Josh came in the room to greet us.

With a pat on the head Kait turned to Josh and said, "Good Morning Joshy"

Josh, a little bit annoyed, comes up to me, head down, and growls, "Moooomm, tell Kaykin to stop calling me morning!"

hehehehehe

After muffling my laugh, I proceeded to interpret the meaning of 'morning'. And it made me think, what was he thinking? That 'morning' was some kind of tease? Kind of like saying. "Good 'boy' Josh"

...and what exactly did he think 'morning' was?

Must of been a bad thing 'cause he surely wasn't happy with Kaykin calling him that!

hmmm... let's see if he says anything this evening when we tuck him in with a "Good 'Knight' Josh"

Can-Ser-Vivors

Another quick update. Josh and Gramma go to Pittsburgh together again this coming Thursday. This will be Jon's mom's halfway point. Also a no-spinal month for Josh. Another 'quick' visit and done.

On Tuesday, Josh (and us) were invited to walk in the LIGHT THE NIGHT Leukemia and Lymphoma cancer survivor walk. We just learned of it last week and I need to get busy collecting donations for that drive. 100 bucks and we get a free t-shirt - LOL - that's our goal! Hehehe

You can check out our fundraising progress or make a donation through the following link: LIGHT THE NIGHT

This coming Thursday [same day as our clinic appt] Josh (and family) is invited to meet with other local MAKE -A- WISH familes at Splash Lagoon (indoor water park). The kids are excited, and I think Josh will enjoy meeting other children his age. I imagine Travis, his friend from clinic who used to live a couple blocks from us, will be there too.

So much for short and sweet... oh well...

I wanted to add, the picture above, is from Josh's grandma's first chemo visit back in July. It's a little hard to read, but Josh's shirt says, 'Me and my Gramma Busy Kickin' Cancer's Butt!' and mom's says, 'Me and my Grandson Busy Kickin Cancer's Butt!'

They say it all!

JOAN & JOSHUA

'Can~Ser~Vivors!'

Surviving Cancer one day at a time!

Short and Sweet

The Picture to the right is a picture of my best friend - Alina's son, Mikey and of course Josh and Nate. They came all the way across the state, from Palm, PA to visit. Mikey has an older sister that is a year younger than Kaitlynn, Theresa. We had a wonderful time and all the kids hit it off right away and got along so well.

Notice the time... so I'll make this quick. Gramma and Josh now go to P-burgh together. The 21st of this month will be mom's 3rd visit and she will be half way done with this stage of treatment. I believe Josh thinks she is very brave and tough like him and is happy to have a chemo-partner.

Not a long post today, and sorry since it's been so long since I've last updated. Remember to sign the guestbook, it's nice to know someone is actually reading. It's my incentive. Although, looking at the counter... We can feel the love!

A Lion in the House

So much has happened since the last post. Where to start?

The blood drive was a big success! They sent us a report card with a break down of the numbers, but Jon’s mom is holding on to that for us and I cant exactly remember the details. There were over 60 donors that day! I know the hours that we were there were way busy. Oh! the bigger news was that there were 20-some bone marrow registrants. Nice huh? He said usually they only get a handful of them. Very excited about that.

The kids are out of school and on their summer vacation now. I am SO jealous. I swear, if I could do it all over I would be a teacher. Oh to have summers off! Heck, sometimes I still fantasize about becoming a teacher “when I grow up”.

The girls are still staying busy with softball. Learning the humility and humble-ity of winning and losing. Mostly though, I think they just enjoy getting out there and having fun. Most times a game ends and you can hear them ask, “who won?” Jon and I… we dream of watching them one day in the women’s college world series!

The pool is open but heck if we can get it clear yet. But – doesn’t stop the kids from going in. Josh and Nathan still want nothing to do with the big pool, but love romping in the back yard naked in their little pool. Hmm, takes a lot more sunscreen protecting those little hineys ;-) Wouldn’t want burnt cheekies now would we?

Josh was in the hospital last week also. Unexplained fever and rash. I’m telling you, if nothing else, this stinking disease reminds me day in and out how resilient our children are. Josh is one of the strongest 3-year olds I know. I just wish he didn't have to prove it to me.

Did I ever tell you guys that he can swallow his nightly meds himself now? We used to have to crush them and dilute them with syrup, but now he just swallows them. Well… sometimes he actually chews them. Ugh – gives me chills just thinking about it! But still, some nights he takes as much as 10 pills at a time.

Did I mention he was my hero?

In other news, and I’m afraid it’s bad, Jon’s mom was diagnosed with Ovarian Cancer last week. Please, please, please say some miraculous prayers for her. It seems Josh will be getting a neighbor. We’ve been waiting for the doctor from Pittsburgh to call Mom and schedule an appt for her, so we can learn what stage she is in and what options are available. Sometimes waiting and wondering is the worst part. I have spoken to another patient of Dr Kunscher, the gyn-onc, and she says he has “golden hands” and has performed two surgeries on her in the last 7 years. I take hope in that. Dr. K. practices out of the hospital adjacent (and adjoining) to Children’s.

One last and final note. Airing tomorrow and Thursday – on PBS – is a two-part movie called A Lion in the House. In our area it’s on WQLN - channel 54 (channel 6 for you cable viewers) from 9:00 to 11:00. Tape it or TiVo it if that’s past your bedtime. If you’re not sure what channel it’s on in your area, check out http://www.pbs.org/tvschedules/?edit_st=y and enter your zip code. A Lion in the House is a movie about childhood cancer following the lives of 5 families over the course of 6 years. It’s an insight into how cancer and it’s uncertainty affects the entire family and the rippling effects it has on the community and everyone involved. The goal of the movie is to spur public attention regarding pediatric cancer to inspire local and regional action also to help build support and dialogue between families and the ongoing battles involved with this beast. To read more about this movie or to preview a clip, go to: http://www.pbs.org/independentlens/lioninthehouse/index.htm or http://www.itvs.org/outreach/lioninthehouse/ to learn more about it.

Inevitably, there will be people out there that think this mini-series will be too graphic or too sad and wont want to watch it. It’s good that you have a choice. Imagine those that don’t. If only we could unplug our sets or change the channel…

Blood & Marrow Drive

As much as I hate to take down the Sixteen-eva story, I need to update his page even more. In case you missed it, be sure to check out the previous journal entry. A few weeks back a representative from the Central Blood Bank in Pittsburgh approached us in clinic and asked if we would be interested in hosting a Replenishment Blood Drive/Bone Marrow Registry Typing here in Erie. The photo on the side is a scan of the posted they made up for the event. If you live in Erie or nearby, I will post the details here and hope to see you there. If you dont live in Erie, please go to your local blood bank and donate!

Bone Marrow Typing and
Replenishment Blood Drive

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Holy Rosary Church
Hastings Hall

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1012 East 28th St.
Erie, PA 16504

See Ya There!

Sixteen-eva!

"Sixteen-eva"

I want to share a little story with you. A story I want to remember forever and a day.

I was getting ready for bed, going about my nightly routine one night, when Josh came tiptoeing into my room. As usual he was going to "hide" in the covers so no one would notice him and he could sleep there all night. For a 33 pound 3-year old, you wouldn’t imagine he’d take up much square footage in a queen-sized bed, but you’d be wrong. Josh likes to cuddle. Which means, if you move to the edge to gain a little space and perhaps a little breathing room, Josh moves with you, like Velcro stuck to my side, until I nearly roll off the edge, clinging to the comforter like a lifeline.

But I’m not complaining. I’ll take all the cuddle-time I can get. I know one day he’ll be a handsome young man, towering over his mother as if I were the child, the last thing on his teenaged mind will be climbing in my lap for a late-night snuggle.

So on this night, I mockingly ask Josh if he’ll rub my back. We usually have some kind of nightly game we play, kind of our bed-time story of sorts, like "Where’s Josh" or "I love you this much" or "gee! my pillow sure is lumpy". This time I decided I’d head him off at the pass ;-) Usually it’s him requesting the massage.

Josh responds with a growl, "Ughhhh, how many times you want me to rub it?"

I laugh because I’ve only ever asked it once before. And I can tell you this much, our little minute-man will not grow up to be a masseur, you don’t have to worry about that.

1, 2, 3, I’m done. My turn. Then he pulls off his shirt and flops face down into the sheets.

So I retort, "Well little mister, how many times do you want me to rub *your*back?"

And he ponders this for all of a second, taps his finger to his lips while he looks into his mind for the answer, "Sixteen-eva"

I smile.

And his chest puffs out as he proudly ponders his response.

Sixteen-eva.

I can hear Halie passing through the hall after brushing her teeth in the bathroom, so I call her in to tell her Joshy’s new word.

Sixteen-eva.

And I tell her the story, and we laugh about it. Ooh’ing and Ahh’ing – how cute.

Then we hear him. He’s laying on his back now, whispering to himself, holding up his fingers. I don’t know if he’s still listening to us, but he’s counting.

One-eva, two-eva, three-eva, FOUR-eva.

Ah ha! And it all makes sense now. An insight into the mind of a 3-year old.

Before this night, I always said to the kids, "I love you forever and a day." It was my signature mark.

Kaitlynn would reply with "I love you forever and a day plus one blue M&M"

And now we will all reply with:

I love you sixteenever!

10 months and 10 days

Long time no write… Hello everybody. A few of us in the Froggy household are getting over the flu, sorry for the delay. I guess with a litter so large there is always bound to be something going on.

Josh’s port-replacement surgery on the 30th went well. He was quite sore for a bit afterward which surprised us since he wasn’t sore after the port-removal surgery, but the nurses explained that there was more involved with putting one in. Makes sense.

But then we didn’t remember him complaining of so much pain after his first surgery either. However, that was nearly one year ago…

Hard to believe so much time has passed already, huh?

As I typed 10 months and 10 days have elapsed since that fateful day. Only 2 years and 4 months to go ;-)

Oh yes, we’re counting.

A day at a time.

Spring is finally creeping up on us up here in the north. I can see the flowers trying to pop there heads through the ground in my front yard. Actually, they’ve been there for some time, only they’ve never bloomed. Hopefully they survived the snow that surprised them soon after their emergence.

Yesterday we took the boys over to the church to ride their 4-wheelers in the parking lot. Ahhh… wide open spaces, and a vehicle that can only go 2 miles-an-hour. I can still count all my toes this day J

The boys had a blast, they really love to play outside. Takes a much blackmail and persuasion to get them to come in… doesn’t hurt when batteries go dead either ;-)

Softball season is upon us too. While I dodged multiple-car-pileups (eh hem, I mean, while I *supervised*) Jon and the girls practiced pitching and hitting in the fields. Kaitlynn and Halie moved up a division this year. Kennidy remains in the co-ed Pee Wee division while Kai moved up to Majors and Halie to Minors. Halie is the most excited and it will be the biggest change for her moving to an all-girls team and being able to steal bases! Oh yeah – she cant wait. Jon will once again coach the Rythmics, Kenni’s team.

A couple weeks ago – in fact March 22nd, the American Cancer Society’s Daffodil Days, was an event-filled day.

Firstly my flowers and fluffy Boyd’s Bear were delivered to work (which is how I remember the date).

Next I received a call from Make-A-Wish regarding Josh’s wish to meet Spiderman. We were planning on going this August around his birthday, but now that all my vacation for the year has already been exhausted, we’ve decided to postpone the trip until next year. Possibly next Easter. I thought the kids would be upset, but we’ve decided the weather in Florida will probably be much more enjoyable that time of year!

Then when I got home from work there was a package waiting for us in the mail from a friend of mine who I met through a leukemia-support-group. She had sent a cute little care package including a book called “Drums, Girls and Dangerous Pie”, it’s about a teenager who has a little brother with cancer and the story told from his perspective. Kaitlynn and Halie are reading it simultaneously, taking turns after the other puts it down. Nothing like tandem-sibling-reading.

To top the night off, Cindy and her husband delivered a large orange remote controlled car for Joshua. They are from an organization called Cody’s Wheels of Hope. www.CWOH.org They started it after their 5 year old grandson passed away of cancer. The had bought Cody a bike for Christmas, a few months later he passed on. Remembering the happiness on Cody’s face, they donated the bike to a child at the hospital. A need was born. Coincidentally enough, they are from Erie. I met Cindy through a website of Josh’s little red-head friend, Travis, who was diagnosed a year before and lives a few blocks from us. I had signed Travis’ CB page and she followed the link to Joshy’s. Once when Josh was in the hospital Cindy left a message for me to contact her. At first I was hesitant because Josh already has a bike, and we just got him the 4-wheeler last year for his birthday, but Cindy assured me they meant any wheeled toy. One day soon after Josh was home form the hospital we went shopping to find the Elefun game he seen on a commercial and wanted. When we were there he seen the RC-car fell in love with it. We never did find Elefun, but Josh had a new obsession. Now the trick is to keep Josh, Dad and Nathan from running over the dogs with it! Boys will be boys.