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

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…