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!!!

---

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.