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.

surgery

Okay, well everyone keeps telling me it's about time I update again - I get the [not-so-subtle] hint.

Josh was in the hospital once again. It was the longest stay yet in every sense of the meaning!

Long story short - 3rd infection in just as many months so he had to have his port removed.

He will go back in for surgery on March 30th to have it replaced.

And believe me he needs it! What my poor little had to endure with all the blood draws AFTER the port was missing. He is a real trooper, but he sure can put up a fight! Took 3 nurses and myself to hold that little super hero still enough.

But in the end he forgave us all and even hugged the nurse (but not until after she said she was leaving) LOL

I have to make this real quick, Nathan is calling for me. The night we came home from Pittsburgh, we had to take littlest man to the emergency room. That night the doctor dx'ed him with possible impetigo (strep infection) but the next day we got a call from the ER saying the radiologist found the beginning of a pneumonia. Well at least we caught it all early.

Thanks to everyone who's signing the guestbook, the girls and I love reading the jokes to each other. Plus, believe it or not - it does keep me motivated to update - otherwise how would I know anyone was reading?!

Love ya all,
Jon & Marian
Kaitlynn, Halie & Kenni
Joshua and Nathan

LTM

Well, I know we are due for an update here, and sorry I haven't really gotten around to it. Mostly I've been putting it off cuz I've been a little bitter and just didn't want to portray that in my writing, but I guess I'll make this short, sweet and informational.

On February 2 Josh entered LTM. This is the last, but longest of all the phases.

8 months down.

2-1/2 years to go.

At his most recent visit, Josh was supposed to have a spinal tap done, but it was postponed due to a cough he's had. They were afraid of giving him any anesthesia, so that was rescheduled for next month. So although the day started off early and we were in Pittsburgh by 6:30, we were out of there early and home in time to pick the girls up from school.

Nathan has been sick for about 3 weeks now, but there is something going around and the whole house has been dodging one sore throat or another.

We got about a foot of snow yesterday on Super Bowl Sunday, but it seems to me spring is just around the corner. One can hope. So far this season has been pretty mild and the snow-factor hasn't been that bad. Before we know it softball season will be in full swing and we will be busy in the fields once again.

In other news our van bit the dust. We knew it was coming. I mean come on - we started out at over 100K miles when we got it. But we bought it before we knew we'd have so many Pittsburgh travels...

I guess it did make it this far. What more can we ask? It *would* be covered by the warranty if the business we bought it from wasn't seized by the FBI. (See a journal entry back in July or August if you missed the news about that...) I mean what kind of luck is that? Anyway, it’s the transmission that went, so there is just no use in fixing it. We will have to start over, and hopefully this time we find something a little more reliable. If you have to find the positive side of things, at least it broke down here in the city, and not 120 miles away in Pittsburgh!

On the lighter side of things:

HOORAY for the BLACK & GOLD!

STEELERS ROCK! We LUV you POLAMALU!

Also, I want to remind you to sign the guestbook. It at least encourages me to keep this thing updated and let's me know I'm not talking to myself. I've been told that sometimes you don't know what to write, but follow Marian Nicks' example and just leave a joke or maybe a picture if nothing else.
*OR* if you want - how 'bout answering this little POLL:

If you happened to see the game yesterday, what was your favorite commercial?

In closing, one more thing, in case I don't make it back on here before next week, Jon's mom is having surgery next Tuesday, Valentine's Day, to have a lump removed from her neck. Please say some extra prayers for her and keep her and dad in your thoughts!

He's My Brother

The word 'CANCER' much more than the abnormal growth of irregular cells. It not only flows through the infected's body, it spreads throughout the family as well.

Even though you know the whole family is affected, you see it daily, you find the sitters to watch over the kids when you're away in the hospital, or when you have clinic visits, you watch them rush to the bottle of sanitizer whenever they sneeze. You witness them defend their brother when a friend comments on how spoiled he's getting. Sometimes we get so caught up in everyday life, the ‘new normal’, the whirlwind of our existence, that it takes an observer’s eye before reality stares you straight in the soul.

I heard myself think, “you are the mother of a son with cancer”. And the thoughts didn’t sound like mine. How is it - even while it’s happening - you still resonate, “it can’t happen to me”?

A few weeks back, beginning of December actually, the day Josh was sent home from the hospital on IV antibiotics, several visiting nurses had come to the house trying to get Josh’s port working, because of course, the first time we should ever have to do it ourselves, it failed. The head IV nurse had to be called in, and when she came, it was decided that the line needed changed out all together. So the dreaded tape had to be pulled off so one needle could be pulled out before reinserting the next.

Of course Joshua cried.

Most times taking the tape off is most traumatic. But this time, because he was already accessed, we were unable to use any numbing cream, which does sometimes take some of the sting away before he is jabbed with the needle.

Picture - Joshua on the couch, mom on one side holding him, dad on the other trying to secure his hands, visiting nurse standing in front of the couch trying to get a good shot at sticking the needle in. Josh already in tears from the tape removal, sisters, Halie and Kenni, hovering behind the nurse trying to see what she’s doing to their baby brother. But the more Joshua cries, the more nervous they get. Before we know it, I look up and the girls are now standing on the steps looking down into the room and now they’re crying.

The needle’s in. Josh calms down. The girls come down. Nurse Tara tapes him up again, disposes of the needle, swabs and flushes with one flick of pulling off her gloves. A trick of the trade. And we go on about our night like it was a mere bump in the road, also a trick of the trade.

It’s kind of like when someone says, “I don’t know how you do it.”

Like we have a choice. What else are you supposed to do?

The next day I get a call from my cousin who works on the pharmaceutical side of Great Lakes Home Health, same company but opposite side of where the nurses traverse. Through the grapevine she got word of Josh’s ordeal the night before, and of all that happened, the nurse commented on the sisters standing on the stairs crying.

This weekend, Kaitlynn was in the kitchen making Josh his notorious peanut butter and jelly sandwich cut in half (NOT diagonally) when Josh asks her to hold him. He says his legs hurt. Kaitlynn, immediately springs into mommy-mode, picks him up, hands him his halved sandwich, and launches a game of 20-Questions. Where does it hurt? Can you walk? Does it hurt here? Or here?

I wonder is she relating this pain with his initial refusal to walk which led to diagnosis? Josh really isn’t one to put words to his discomfort. It made me sit back and wonder what thoughts might be running through her head.

This morning, I wake up and find the following note taped to my computer screen. Jon discovered it there. I suppose this is her critique to the Mark Shultz video I uploaded on Josh’s site last night.

This is wut I wrote

I was down on my nees beging god if my brother Joshua cood get beter but it seems my brother still has canser. Can you heer me. he’s not gust anyone he’s my son.
My mother was looking in his room and she rubed his forhead and she tried not to cry her eays just got fool of teers.
Can you heer me. he’s not just anyone he’s my son. Am I getting throgh tonight. I’m dreeming about my brother getting alright. Can you heer me can you see him. He’s not just anyone he’s my son.

It only took me 31 min.

By: Kennidy
To: Family

***I wrote this journal entry the day before Josh was admitted to CHP the second time, only didn’t get a chance to post it then. But still wanted to share it. Besides – I’m all about saving typing time when it comes to updating this thing ;-) Although one might not be able to tell…

HOME

WE ARE HOME!!!

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PM Update

Okay, Josh's ANC is only 80, but up from the previous days so we will take it!

He was allowed to go to the playroom with his mask on. I think he just about played with every toy in there! He particularly liked a Darth Tater (potato head) he found.

We watched more Scooby Doo while we were in there.

And here's a question I'll offer a prize for:

Does anyone know exactly HOW MANY Scooby Doo movies there are out there? --- geez!

What else? Oh! Josh got all his e-cards today. All 11 of them! One with a bear, some dogs, a cat, STEELERS, race bikes. They gave him a smile and I enjoyed reading them - thank you!

For those of you that dont know what I'm talking about, just read back a couple posts in his journal.

They say... if the cultures still come back clean tomorrow, then we may be able to COME HOME. yea!!!! We're keeping our fingers and toes crossed.

We miss everyone SO much! And thanks to everyone helping out at home. I hope you all know how much it means to us.

I almost forgot. He got to see the therapy dog this morning. His name is Elmo. He's a Labradoodle. He was extremely soft and if you talk to Josh, he will tell you, 'the doggie licked him'. ROFL He talked to his sisters today on the phone and told everyone of them, but got so frustrated if they didnt understand him, just nod and say, 'oh how nice'. Hehehehe. When it finally came time for him to talk to Kenni, I told her ahead of time exactly what it was he was going to say, so he didnt get upset. :-)

Thanks for all the prayers! Hopefully we'll get to bust out of here tomorrow.

There's No Place Like Home!

Day 4

Good morning!

Josh's doc made a solo round first thing this morning (7:00). He was one of the best Residents I've talked to by far. I like him a lot.

He said the culture from Erie is showing something growing. Not sure what yet though, hoping to know more later when they make their rounds as a collective team.

As far as the Blasts that showed up in the bloodworkfrom Erie. He said either him or the Fellow would look into Josh's blood smear personally. As of yet, I dont think either of them had. But he also said that he trusted their lab and sure the other lab was being overly cautious.

Then the Fellow from yesterday was in and basically said the same thing, but he said the bacteria was probably the same as last time. The Bacillus. So same as last time, have to have 2 clear cultures before
going home. SO far the cultures from here are still growing clean... maybe they are our clear cultures. He did say that because it showed positive so late (unlike last time when it showed itself the very next day) that he believe we caught it early.

If it is the same thing, they may have to figure out how to get it cleared from the line and stop to from growing back again. One of the residents over the weekend said they have some tricks to try before they begin to think about replacing his port.

ANC is still low. Havent gotten a copy of today's labs though to see if we're allowed to leave the room yet.

In good news, he was FULL of energy yesterday! Mostly thanks to the hydrocortisone he is on for his blood pressure. He was bouncing off the walls and the nurse had to come in several times to fix the alarms he
kept setting off ;-) They started to wean him from the steroid (hydrocortisone) yesterday by spacing the doses further apart, and they hope to have him off of it completely by the end of today.

Also he got a Power Ranger DVD so that made his day!

It's the little things :-)

Nothing much more to report here. Just trying to survive the days without going bonkers with boredom.

And believe it or not.... you can only surf the internet so much in one day without having had enough... did I just say that out loud?

Everyone else still sleeping here and it is da-ar-aark in here. Only the light of the monitors to type by. Methinks it's about time I try to stir them a little. Josh's breakfast came in a while ago... nothing like cold eggs and coffee. Yes. We ordered him his favorite --- cappachino (sp?), with a side of hashbrowns ;-)

PS - ChildLife was just in to see sleeping beauty. She said if Josh's counts are up enough, and he is awake... there will be a dog up here today and she put him on a list for a visit. He should like that!

Have I mentioned - it's the little things yet? ;-)

PSS - sorry for any spelling or typimg errors (see what I mean?) ...you can only proofread so much and I am not at home to take advantage of good old Microsoft Word!

e-cards

Hey guys wanted to send a quick update that I was reminded of when talking to Kaitlynn this morning.

If you go to:

www.chp.edu/contact/getwell.php

you can send Josh a free e-card - his room number is 8621 - they will deliver it straight to his room! We'll wallpaper his room with them ;-)

I had forgotten about this, but Alina sent Josh a card during his dx admission and I remembered it last night reading through his admission folder, then woke up this morning and wanted to remember to email Kait before I forgot again...

they really do deliver them and we taped it to his bed last time. He loved it. Was the next best thing to stickers!

For those of you who didnt read last night's late journal entry (and who would've besides Dracula? it was so late...) just click on the JOURNAL link above to read the archived entries. And dont forget to sign his guestbook so we know you stopped by!!

Love ya all!

Doc Oc

...and I *almost* could've predicted it if I dared think it outloud.

Last month when Josh had the blood infection I noticed a rash on his chin (Jon and I 'bickered' over the cause, main reason I particually remember it). Then just days before his clinic appt this Thursday I notice the 'rash' was back.

I thought it --- but didnt say it.

Anyway, sure enough Josh wakes up 6 o'clock this morning with a fever. His ANC at clinic was 260, today it was 112, so here we are.

And what a day.

Like anything else was to be expected?

When they first told us he was coming to Pittsburgh they said it would be by Ambulance. But despite THREE boluses and one hydrocortosone (sp?) shot, they couldnt get his blood pressure up, so they decided to Life Flight him. I tracked Jon down, who had left early to pack our bags and hopefully still meet the us and the ambulance in Pburgh, he had to come back to the hospital because there isnt room for parents on helicopter. Then the ambulance from Erie showed up, apparantly someone forgot to call them and tell them plans changed. They leave. Soon after the helicopter team calls to say they were grounded in Grove City because of weather (go figure it wasnt snowing, but it was gloomy) so an ambulance from GC picks them up (including the helo driver and meets us in Erie. We got to the ER this morning just after 7. The GC ambulance didnt leave Erie until 2. And as if that wasnt enough... the darn ambulance nearly ran out of gas and we had to stop at the Cranberry/Turnpike exit for gas --- and then find a station that had DEISEL.

I swear I couldnt make this stuff up if I tried...

I told the ambulance driver I think we were jinxed today!

I mean come on! Who ever hears of an ambulance running out of gas?

Because of Josh's BP and all the fluids they jammed him with, he was admitted to PICU, but we were transferred to the onc floor about an hour ago.

They're monitoring his vitals continuosly over night, but he cant wait til tomorrow to be freed of those schtinkin'
Doc-Oc wires! And hoping his ANC starts to rise so he can at least go to the play room. His WBC in clinic on Thrusday was 1.6, this morning in the Erie ER it was 0.6, tonight in the PICU it was down to 0.4. Can only go up from there right?

I've been itching to get on the computer ALL_DAY. I borrowed a friend's laptop to bring with us, but then couldnt figure out how to get it online... Settled on waiting to figure it out til we were transferred from the PICU. Got up here and there's a computer in the room.

Ahhhhh

Life is Sweet - lol

it really is the little things!

Josh has been NPO all day and was finally allowed to eat when we got up here.. now dad and I (who were subsequently NPO also...) are trying to enjoy a cold breakfast/lunch/dinner now. Ummm nothing like cold waffle fries.

With ranch ;-)

Things'll be fine -- but we're counting down to parole already.

Oh and the play room!

Free music video codes by PCPlanets.com

Time for another song change -- nice and appropriate for right now ---> Who says we cant go home?

10 down, 10 to go

Joshua's visit yesterday went smooth. It was the best spinal tap yet -- is an oxymoron or what? Well, the anethe. finally figured out the perfect "recipe" and Joshua woke up in good spirits. Not one ounce of agitation! 10 down, 10 to go, now we can finish the second set with a breeze. That's right -- only 10 more LP's. After next months spinal, the remainder of them are spaced at 3 month intervals. Figure 2-1/2 more years... 4 a year... half way through. Spinals, not time, but we take it where we can! So despite the good LP and the speedy clinic visit we still didnt get home til nearly 6:30. Long and exhausting day, but again --one step closer. Josh seen his head doctor yesterday, you'll remember Dr Cookie Monster? Gotta love this guy. Always takes the time to play with Josh and answer all our questions. The only downside to yesterday's appointment is that Josh's counts are way down again. ANC=300. So we've been walking around neutropenic and not knowing it... He's on a chemo hold until at least next week when the visiting nurse can repeat the labs. And how weird is it to go to bed at night without having to worry about preparing meds. Strange feeling. Last night I laid in bed feeling like I was forgetting something. We could get used to this ;-) Anyway... I found another song I like --- and for whatever reason, this one I cant figure out how to play, so if you want to hear it, click on the following link. It's from the Prince of Egypt (cartoon) soundtrack by Alison Kraus.

He's My Son

Am I getting good or what? ;-)

First I learn how to sneak in animated pictures -- did you check out the swinging Spiderman in Joshy's guestbook? He just LOVES it. And dont ask how many times he's made me put it on already... it's kinda like ansering the infamous Tootsie Pop question. Today I figured out how to add this video. The first two minutes is a prelude to the song, but it makes it all that more meaningful. The song is beautiful. I'm like a kid in a candy store figuring out all these codes!

EDITED 1/9/2006:
to change video to a clickable link:
He's My Son by Mark Schultz