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.

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