Wednesday, December 28, 2005

we don't need no shtinkin' hair

Over the holiday someone commented on Josh’s hair or lack thereof and asked if we cut his hair that way.


Okay... now I know Josh's hair is in the stages of growing back and does look kind of funny, picture patches of stragglers peppering his head. Not stubble over his whole head. Not a crew... but a few 1/4" hairs here and there in various spots on his head.

Now what kinda shaver do you suppose does that?

And if they do make one ---- I want my money back!

So I relayed this story to my very bestest buddy that understands all -- and she retaliates these select comments that I wish I woulda had on hand THEN kenyit

So for future reference and for a worthwhile laugh:

1) I washed it with some new shampoo and it all fell out and we're in the middle of a huge lawsuit.

2) his sister got mad at him for messing with her stuff and shaved it off in the night.

3) it's a new cult thing

4) religious preference

5) we don't really like him

6) our hairdresser was having a bad day

7) I'll never leave him home with dad again....

8) got it stuck in the conveyor belt at the grocery store... it was a big to do.... couldn't be saved

9) he wants to join the army later and figured he'd get in the good graces of his sergeant now...

10) don't need no shtinkin' hair!

11) brother pulled it out, one piece at a time....

12) ever see home alone?

ROFL -- thanks Alina – Love ya girl!!

Friday, December 23, 2005

I Remember Christmas

I wrote this article for a “Reader Participation” they hold this time of year for our local newspaper. Turns out when I submitted the article the columnist was already on vacation and had scheduled all the submissions already. But finding the perfect opportunity to not let my long-windedness go to waste ;-) I decided to be lazy and cut-n-paste another journal entry….

I hope everyone has a very Merry Christmas – and know how much we love you all!

I remember Christmas...

I remember the Christmas spirit.

This summer my not quite 3-year-old was diagnosed with Leukemia. It's a devastating blow to anyone's family to have a loved one thwarted with the "C" word, but your own family, your own child...

Because of Josh's age, he has to be treated in Pittsburgh. There aren't any pediatric oncology facilities in this city. So we make several monthly, or even weekly and sometimes bi- or tri-weekly visits 120 miles away. Our home away from home.

Over the last 6 months we really have found a sense of community. My workplace pulled together, our daughters' softball league, our friends, our church and especially our family. They've all made us feel like one giant circle.

We found family where we didn't know we had it. Our "new" used-van found miles it never knew it would see. Our other children found maturity beyond most adolescents' responsibilities. Grandma and Grandpa found patience that would make any saint pale in comparison, the vigor to chase a toddler, the knowledge to do homework all over again and versatility deal with a teenager.

We all found hope.

When the holiday rolled around I was ready! Determined that this would be the best year yet. The day after Thanksgiving came and as our tradition goes, out came the decorations and up went the tree. Not a real one (as Josh can not be exposed to the potential molds) but a fine representation to hold all our collected memories of year's past. Dad and daughters lit up the outside of the house, and I went around doing my yearly dusting as I made room for the holiday display. Then daddy went hunting and the kids and I made candy, burnt fudge, chased away thieving hands, and baked pre-formed cookies. It was a sentiment that had since been lost in the material madness that comes with the season. It was a celebration of life, the life we have now.

Just a week into our celebration Josh was hospitalized with a blood infection. What was thought to be a weekend mend in Pittsburgh, turned into a weeklong overhaul. Once again family pulled together and carted children to school, from school, from basketball practice, from after school activities. They made dinners for 6 instead of 2, they rearranged sleeping arrangements, harbored the family dog, did homework... once again.

And work was missed. And vacation had already been exhausted from previous hospital stays. But just when you resolve that everything will be okay despite it all, and that you will make do with the "sentiments", the real reason of the season, more people come forward with their own camaraderie.

A family drives from Buffalo to deliver a puppy. The church and its families calls and calls again. Visiting nurses. Neighbors. Family lavishes gifts from Kentucky, Louisiana, Maryland, Texas, and across the state in our very own Pennsylvania -- beyond even previous years' splendor. And although they carry material possessions, the feeling they deliver goes beyond any emotion I can convey on paper.

The true meaning of Christmas.

And as our priest pointed out, sometimes Santa isn't always dressed in a big red suit.

I remember Christmas... and this one will forever be etched in our hearts!

Monday, December 12, 2005

12 Days of Chemo

On the 1st day of Christmas my doctor gave to me some platelets on an IV

On the 2nd day of Christmas my doctor gave to me two spinal taps
and some platelets on an IV tree

On the 3rd day of Christmas my doctor gave to me three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 4th day of Christmas my doctor gave to me four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 5th day of Christmas my doctor gave to me FIVE STEROID PILLS...
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 6th day of Christmas my doctor gave to me six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 7th day of Christmas my doctor gave to me seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 8th day of Christmas my doctor gave to me eight scales a tilting
seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 9th day of Christmas my doctor gave to me nine nurses nursing
eight scales a tilting
seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 10th day of Christmas my doctor gave to me ten hairs a growing
nine nurses nursing
eight scales a tilting
seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 11th day of Christmas my doctor gave to me eleven ports for pushing
ten hairs a growing
nine nurses nursing
eight scales a tilting
seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and some platelets on an IV tree

On the 12th day of Christmas my doctor gave to me twelve thermometers
eleven ports for pushing
ten hairs a growing
nine nurses nursing
eight scales a tilting
seven buckets for puking
six slim jim cravings
four calling cards
three heparin flushes
two spinal taps
and - some - plate-lets - on an IV treeeee!

Monday, December 5, 2005

Day by day

Well, we're still here, cultures are still coming back positive. Day by day...

That means Wednesday at the earliest. They've stopped all antibiotics excet the "heavy-hitter" (as his doctor put it today), Vancomycin, and based on the kidney tests they ran yesterday have upped his IV fluids. They are hoping the "sensitivity testing" they begun will reveal an better antibiotic to use that wont be so harsh. Otherwise Josh is doing well. Keeping in good spirits. The doctors and especially the nurses are wonderful here! They go all out to make everyone feel at home. Today Jon was coming back from doing errands and got hit in the back by a plastic hockey puck gelakguling One of the male nurses and his patient were in the hall playing Hockey. How funny is that?

Anyway, we miss home the most. But are thankful that the kids are in best hands. Just wish we werent so far apart and missing them all so much!

Day by day...

Sunday, December 4, 2005

The Impatient Inpatient

REAL quick as Josh plays on the floor with his Legos.

We are in the hospital. Came home from clinic on Thursday and Josh started to run a fever. Turns out he has a blood infection.

Josh is on 4 different antibiotics right now, actually they stopped one this afternoon as they decided it wasnt targeting his specific bugs.

The cultures are showing two separate things growing.

One is a gram positive coxsackie, which I am told, is most likely a staph, which is treated by the Vancomycin he is already on.

The other is a rod negative something-or-another. They dont know the specifics on this one yet, but are calling in the infectious disease people and will go from there. We are wont bust out of here until Tuesday or Wednesday at the earliest. His cultures need to come back negative at least twice before they'll spring us.

So far, as of this morning, they are still growing postive. We'll see tomorrow if this morning's draw is negative. That's that prayer. That one of the anti-b's he's on now will start to tackle both things growing. And if it doesnt, that the infectious disease people can figure out a course that will tackle it.

Hope everyone is enjoying their holidays. Dont worry about us, besides being here, everything is going well. the girls and Nathan are staying with Grandma and Grandpa (I think I will need to bring home a BIG box of Tylenol for them when we get home), and despite everything, Josh is actually in pretty good spirits, although he is missing his Power Ranger show and is wanting to go home every now and again to watch it. As hard as Jon as tried, and as far as he's walked, he's been unable to turn up a copy yet... in fact he walked in a small little Pittsburgh college store here yesterday and they just laughed at him. What? never heard of a Super Hero before :-)

He did get cool Pitt Panther Tattoos that he has plastered to his bald little hear ;-)

Wednesday, November 30, 2005

Ding Dong D.I. is Done

First let me wish everyone a Happy Holiday! Hope everyone had a wonderful Turkey-day.

I guess it’s high time I update this thing.

It took us 10 weeks to get through this phase instead of the mapped 8, but we are finally approaching Interim Maintenance 2 - TOMORROW!! Also 8 weeks long. This is phase five of SIX!

Yeah!!!! Although phase 6 will last 2-1/2 years, it’s wonderful to be nearing the last phase à Long Term Maintenance, a.k.a. LTM.

LTM will consist of a series of 12-week cycles. But don’t want to get ahead of ourselves. More about that as we approach it (only 8 weeks away -- Alina, I can see that light ;-)) For now IM2. Woo Hoo –

Ding Dong D.I. is gone

D.I. is gone

The wicked witch is gone!

So we made it through the dreaded Delayed Intensification. A little less hair, but no more for the wear!

That said, one thing I’d like to point out or request.


Of all the transfusions Josh has had, it’s amazing to see the difference a little blood can make J

Normal counts are:

WBC 5,000-17,000 concerns under 1000

Hgb 11.5-13.5 transfuse under 7.5 or symptomatic

Hct 35-47% transfuse under 19

Platelets 150,000-350,000 transfuse under 30,000

When Josh’s counts are down, we can tell even before the blood work. He is tired, cranky, pale (more specifically his lips turn white), just isn’t his usual self. And although I’d like to ask you all to pray for his counts to sore, the chemo is designed this way. It gets the good with the bad. In order for the leukemic cells to go, the chemo attacks anything that gets in it’s way. Including the healthy cells.

As for the platelets, they have been called “Liquid Gold”. For those of you who never knew (including me) platelets aren’t red. They are golden in color. When you donate blood, you are not donating platelets, exactly. Only a tiny bit of platelets are separated from whole blood during a standard donation. Donating platelets is a separate process, in which your blood is drawn from one arm, spun in a centrifuge that separates it from the platelets while the remaining blood is returned to you through the other arm. And to top that off, platelets have a very short shelf life of only 5 days.

When platelets are low, there is a tendency to bleed. The slightest nick can be a gusher. Even internal bleeding is a worry. When Josh’s platelets are low he isn’t allowed to brush his teeth. He has a sponge to wipe his teeth with to prevent his gums from bleeding. But since Josh has started treatment, for some unknown reason, his platelets run high. Real high. And this comes with another set of concerns. If platelets are too high, your blood is thick, and now they have to watch for clotting, as blood clots can be harmful in their own rite. They don’t know why Josh’s platelets run so high. Their only explanation is, “everyone has their own way to respond to medicine”.

Josh is B+

Jon is B+

I am O+

I am a universal donor, so both of us could give our blood to Josh if we were allowed. But we are not. We’ve already asked. In the future, if Josh ever were to need a bone marrow transplant, donating our blood now would cause him to build up a resistance. The odds of a sibling being a bone marrow match are 1 in 4. Having 4 brothers and sisters, he is almost guaranteed a match. So if he were to build an immunity to our blood, he would in turn be fighting their marrow. Does that make sense? I hope I am explaining it correctly.

So we can’t donate to Josh, but we still give blood. I remember the first time I drug Jon to the blood bank with him kicking and screaming all the way (well maybe not that bad, but I wont let him read this part). We filled out the questionnaire, and each went back to the exam rooms separately, I ended up not being able to give that day because my iron was too low. Figures. J But Jon was a trooper, and now he gives all the time. Personally I think he likes the free shirts ;-)

Holiday Greetings everyone!
. . . celebrate each day.

Monday, November 14, 2005

who said bad hair was better than no hair???

Hehehe, just had to do another quickie! Kenni has this life-like doll... scratch that, HAD

Well, it's still intact, just missing a head of hair.....

and guess who adopted it?


need I say more?

Thursday, November 3, 2005

bubbly and lighthearted

Okay, just had to do a quick [I hope] update.

I’m sure most of you have heard of the kitty story, where Joshua, under a steroid-induced spell, stuffed our polydactyl kitten, Snickers, in the freezer and tried to hide it. Thank goodness she wasn’t in there long before Jon discovered her -- despite Josh’s best efforts to distract his attention from the refrigerator.

In short::: it must be hereditary

If you follow this link to a new Kodak album you can take a look at pictures snapped minutes ago at the sly little Nathan stowing same piteous cat in a birdcage.

Luckily, there weren’t any tweetys in it.

And while we are on the topic of funny stories – let’s keep this entry totally bubbly and lighthearted.

Kaitlynn is running for class Treasurer (her speech is tomorrow and elections are Monday) and the girls and I are sitting at the table coloring posters. Joshua, being the ever so helpful brother that he is, is ON the table coloring also. I didn’t catch it, but Halie must’ve done something to rile Josh, all of a sudden he stands up on the table and shrieks, “Halie Michael!”


Do we use his middle name when he’s causing trouble?

Not Joshua, he’s an angel….

Must be dad – he’s the only other Michael in the house…

Oh and yes… those are Star Wars underwear ;-)

Tuesday, November 1, 2005

Did you know Spiderman was bald too?

Real *quick* as Josh watches Shrek on TV, who by the way he got to "meet" yesterday t-n-t'ing

As you can tell, Josh was Spiderman -- like there is anyone else? and he was a big hit with his painted head! Which turned out to be an accidental windfall.

We have been keeping an eye out for the famed Spiderman costume, with not much luck. Either wrong timing, or wrong sizing… whichever, just days before Halloween, we found ourselves on a pursuit. Store after store, everything was picked through with a fine tooth comb, finally at the last possible option, we ventured inside, disheartened by the single rack of children’s costumes. We decided to make our way back toward the seasonal aisle and found a strewed mess and still not many more options. We begin to look at other costumes. Batman? Jak Jak from Incredibles, a dinosaur? A Power Ranger?

I was so upset and kicking myself for not acting sooner, I looked up to the K-mart “sky”, sighed, and commented on how all he wanted to be was Spiderman. Next thing I know, I look to the floor, where I had looked many times before, and there sat a Spiderman wrapper – but no costume. I hurried and grabbed Jon’s attention when just then he looks to the ground on the other end of the aisle and there sits the costume!

No mask.

But in hindsight it was the best mishap, I don’t think Josh would’ve left the mask on, and of all the spider men out last night he was the only super hero with a red head. The REAL Spiderman! sembah

Well he’s my hero anyway.

One mom, trick-or-treating with her own children, laughed so hard she reached in her pocket and gave Josh a dollar – LOL – she said it was the best laugh she had all night. All I know is that it was the perfect night to be bald! And I loved watching him dance to all the attention. Whenever anyone would allude to his ‘mask’ he would run, jump, shoot webs and exclaim, “I’m Bidaman

But it wasn’t long before his little spider body tuckered out and he was riding in the stroller, even sooner than the 2-year old Green Goblin, better known as Nathan. Towards the end of the night Josh decided walking up to the door wasn’t worth it anymore. If they didn’t come to him as he hung his bucket over the edge of the stroller, I think he figured he had plenty of treats already. And if he didn’t he would steal his sisters’

Today after his second bath and a LONG soak in the tub, the red-stained-skin is finally faded. But not his web-slinging spirit!

Thursday, October 27, 2005

Home with his web-slinger

In just a few short weeks the familiar green of the roadside trees has turned to a colorful bowl of Trix.

I think half of you know it was an early start today. We had to be in IR (interventional radiology, where Josh gets his spinals) by 6:00! They don’t actually start the procedure until 8, but we have to go early for check-in, port access, meet with anesthesiologist, weight, vitals, so on and so on.

The LP went well, but afterward…YIKES! Let’s add another med to the NO_NOT_USE list. Different anesth. Doing the procedure this week. A very nice woman, but as the post-op nurse described, they are like cooks, they may be cooking the same thing, but each one likes to use their own personal concoctions to achieve their flavor. Learn something new everyday, and today we learned NOT to use Sevoflurane on Joshua. You all have read that Josh has adverse reactions to Versed and Ativan, meds that are SUPPOSED to calm him down. Instead he goes into a rage. Same for sevo. Today’s doctor’s recipe consisted of 60[units] of propofol (which is “sleepy milk” injected thru his port) and sevo (which is administered via gas mask). Usually Josh gets 150-200[units] of sleepy milk and no gas. Jon and I were no sooner in the recovery waiting room, when the phone rang, telling us Josh was awake. In fact, Jon had just left to go down and get me a coffee. Usually Josh sleeps a good hour and they have to wake him up then call us back.

When I walked into recovery there were two nurses around his bed trying to console him. The minute I picked him up he started kicking me and screaming for his daddy. When dad got upstairs (which was actually only minutes but seemed like forever) and tried to hold him, he kicked, screamed and cried that he wanted down. But putting him down didn’t help either. We were afraid he would hurt himself trashing about on the floor or bed, wherever his choice of down was for the minute. So this is another inconsolable med that turns our baby into a temporary monster. The nurse describes it as his body reacting before his brain can catch up. Who knows, but it lasts about 30-45 minutes, a seeming eternity when you’re trying to comfort your child in every conceivable way. I remember the first time this happened, when we were still in-patient, the doctors and nurses blamed it on the versed, before quickly shutting the door behind them as they fled the room. The only thing I could do was sit there, hold him, rock him and try focus on anything but the screaming. Oh and protect my face and groin ;-)

Once his anger subsided enough that we could comfort him, we got him dressed so we could make our way down to clinic for the new chemo of this phase. Weigh-in nurse, Donna, had an awesome frog that she gave to Josh. His name is Floppy. Josh couldn’t wait to bring him home to show Grandma his very own frog. Now he’s just like her ;-)

So the new chemo, cytoxan, comes with LOTS of BIG warning stickers all over it. I guess this is one of the ones that can burn your skin if it comes in contact with it. Makes ya wonder what it does to the rest of you. Which brings me to my next point. Because this drug can cause bladder damage, Josh had to be WELL hydrated before being infused. So before he could even begin that chemo, we had to start a glucose drip that had to hang over 2 hours.

2 hours, 2 chocolate milks and 2 trips to the bathroom later, the cytoxan was hung. This was a 45-minute infusion. And once that poison was emptied into my son, they finished with AraC, which Josh has had before during induction (phase I), but this one was *only* a 15 minute drip.

All-in-all we were out of there by 2:30 and home just before 5. Did I mention that we had to be there by 6?

Did you know that the sun still isn’t up by 7 this time of year?

Tomorrow and over the weekend, a visiting nurse will come and administer the next 3 infusions of Josh’s AraC. In fact, when we left clinic, they left his port accessed so Nurse Emily, wont have to poke him, and will only have to de-access it on Sunday after his last dose – for this week. Next week we will start over.

Without sevo.

And without the bladder-burning cytoxan.

Josh thinks it’s cool that he still has his lumen attached. Though was a little confused as we walked down the hall and realized it was still swinging beneath his jacket. Of course he had to show it off to his sisters once we got home, and already used it to “shoot” them with his super webs! ‘Gamma-n-Gampa’ will come later with some med-tape so we can strap it down, in hopes to deter Nathan from ripping the thing out – or to rescue Spiderman from pulling it out himself.

Real quick, as I’m nearing my 5000 character limit to this entry… I wanted to comment that this is exactly why I have been putting off so many updates. I just don’t know when to shut up. Then once I do tap the novel out on the keys, it kills me to have to replace it with another. I really should learn to be more brief…

Friday, October 7, 2005

tired already

As the nurse said today,

"one visit closer to the end..."

I guess that's true. But with 3 years still ahead of us -- the end still seems so far away.

Sorry to everyone that comes for an update to find none.

I'm so tired lately. Suppose the 10 1/2-hour work days, then 3rd grade spelling, 5th grade english and 8th grade math are taking their toll on me. And I thought the homework in college was bad...

Nothing compared to Joshy's journey though.

I had a nice long update tapped out. But guess it's just not appropriate right now.

Too ominous.

Ha - ominously -- one of Halie's spelling words this week.

More visits. A couple more. Bottom line, the new chemo is taking it's own toll on Josh.

and I think I'm tired...

At the beginning of this phase, Josh's ANC started out near 3900. That measures his ability to fight infection. Josh's ANC hasnt been this high since diagnosis. So we started in a good position.

Even before his second dose of Doxorubicin he was down to 1500.

Anything under 1000, he is considered neutropenic and puts him at higher risk for infection.

This week his ANC is 700.

He is now neutropenic. Which means no visitors.

And he had yet his 3rd shot of Dox, so his count will continue to drop.

Next week they predict it will be under 500. Josh cant move on to the next half of this phase until his healthy cells fight back and rise above 1000 again.

A visiting nurse will be coming to the house to monitor his counts until they are high enough for us to return to Pittsburgh. Although, we may have to visit in between for a blood or platelet transfusion if his other counts continue to drop too.

I'm tired and Josh is waiting for me.

Thanks for checking in on us -- dont forget to sign the guestbook, it's encouraging to know someone is actually reading.

Friday, September 30, 2005

Fly High Clare Bear

I need to ask for one last favor for Little Clare Bear.

Please pray for her family as they heal. Clare joined the angels yesterday.

I am at a loss for words...There was an entry into Clare's guestbook after her passing it brought me to tears:

"She fought so very hard. Maybe harder than a little girl has ever fought before... After so long restrained in bed to machines, how exhilarating flying free in Heaven must feel. You really are an astronaut now Claire. Fly far sweet Claire. You own the skies."

If you followed Clare's story, you will know that before Clare had her Bone Marrow Transplant, she had to undergo radiation. Her heroic sister, Phoebe would go on the visits and talk to Clare over an intercom, they would play astronaut. Clare was the astronaut flying high above the Earth, and Phoebe was mission control. What a brave mission they fought. Pray for strength, comfort and peace.

Godspeed sweet Clare

Wednesday, September 28, 2005


2 hours to Pittsburgh

2 hours in Pittsburgh

2 hours from Pittsburgh

...and we didn't even have a spinal tap.

It was postponed 'til this Thursday – tomorrow.

So we've had a couple clinic visits since the last update. As you can guess, things can get a little hectic around our house; just ask Grandma & Grandpa who came for a brief visit yesterday evening. I think they headed home and went straight for the Tylenol!

Anyway, Friday's visit went well. It was long considering we didn't have a spinal, and the appointment was late-day, so we didn’t get home ‘til nearly 7! But Josh got a new chemo, doxorubicin. For the first half of the infusion, the nurse sat with us to make sure nothing leaked from the line. We’ve been told this one can burn the skin. So far no side effects, except for the red-pee J but they said it would take a couple weeks for it to wear him down. Kinda like it will take a couple weeks before he loses his hair again.

Yes, Cookie Monster - I mean - the doctor, commented on how nice his hair was growing back, but warned that it would fall out it again this phase. Good news is, Josh has a cute baldhead and once it grows back, he probably wont lose it again. This week Josh will get more dox, and another spinal tap, on top of his regular chemos, which includes the vincristine, he also gets this in his port - an IV push – this one causes his fingers to go numb and his jaw to hurt.

As long as the first half of this phase doesn't drop his counts too low, Josh will continue to the second half, on schedule. I know I'm getting ahead of myself seeing as though we just started this phase, but I'm just putting that warning out there as the doctor put it to us. He says a lot of times the counts will drop dramatically and the kids will need platelets or blood transfusions to bring their counts back up to acceptable levels. He also cautioned us, that this is the phase where Josh might end up inpatient with fever and neutropenia, and gave us the run down of what to watch for and what to do when it does.

All that said, this past Monday Josh had another clinic visit. [And he goes again tomorrow] This was the first visit I didn't go. I was a little heartbroken, but Jon handled it well! The night before I made up all Josh's meds so that Jon wouldn't have to fuss with that. All four vials, including the squirt gun chaser, were laying neatly on his Spider Man plate in the morning, along side a tube of EMLA, the cream we usually put on Josh's port before we leave for P-burgh to numb it. It's supposed to be applied an hour or two beforehand to allow plenty of time to absorb into the skin & tissue. Josh still feels the pricks, but I imagine without it he would be even more miserable.

This time the cream went on his leg in preparation for the Peg shot. Jon slathered it on and covered it with Glad Press-N-Seal (as opposed to tape which Josh HATES having ripped off, even more than the pokes).

This, the sole purpose for Monday's visit… Can not be on the same day as the port chemos, can not be on the same day as the spinal chemo, and has to follow at least 3 days of steroids to help reduce any reactions.

Jon said they went straight back to a room, no paper work (yeah! for him) since we were just there 3 days prior. And since they only had to see a nurse, there was hardly a wait in the treatment room. Nurse Rose was right in, praised Jon on the EMLA masterpiece, and with Josh on daddy's lap, stuck the needle right in. He still cried (Josh not Jon ;-)), but when daddy requested the bin of toys, the nurse sent them to a playroom instead. Different than all the playrooms we’ve seen before. The pain from the shot was forgotten! Despite the bag of super heroes Josh packs every week, it never fails; someone else's toys are always better!

They got to stay A_WHOLE hour while the nurse watched for any adverse reactions. Good thing they even had big-boy toys for dad – a TV!

Soon after they head home with more meds and a mental list of things to watch for.

Josh's leg did break out in a rash as the day wore on, and not much swelling, but it was back to normal next day

Did I mention that Josh is back on the "Roids"? A 7-day pulse this time - and repeat again in two weeks. It has yet to affect his appetite, but I suspect any day now. Just about the time he ends the pulse...

Other than the normal inconveniences we've been enduring lately (the sometimes nausea and vomiting, the sometimes diarrhea, the brief finger numbness, the leg pain which causes his limp, and his irritable moodiness) Josh is doing pretty well. Oh, if you exclude his restless nights lately. For the past week or so, Josh has been waking up in the middle of the night crying. I don't know why. He doesn't have to go potty, he wont tell us if anything hurts, but with a few cuddles from mom or dad, he settles down enough to fall back to sleep like nothing happened.

Too bad mom and dad still remember. Especially when the 5 o'clock hour rolls around and the alarm starts to sound...

Tuesday, September 13, 2005


I need to ask everyone a favor.

There is a little girl from Maryland that desperately needs our prayers. Her name is Clare. In May of this year Little Clare relapsed after being completely off treatment for 16 months. Off treatment – OT. Which means Clare had completed her 2 ½ years of Chemo and was free and clear of cancer! (girls endure one less year than boys for anatomical reasons) 16 months later, the monster reared it’s ugly head. Four years earlier Clare was diagnosed with Leukemia, ALL, the same as Josh’s, November 2001. She was on CCG 1991, the same protocol as Josh. She was also 3.

Now she is 7.

Nearly 2 months ago, Clare’s brave sister, who was found to be a perfect match, gave the greatest gift a sister could give. LIFE. Phoebe checked in to the hospital, was hooked up to machines and bravely donated her bone marrow, the core of her being! so that her sister could continue to fight for her life.

Phoebe is home, Clare is not. Mom and dad juggle home and hospital in 12 hour shifts as their family is temporarily fractured. Clare now wages another war. She had been moved to the Pediatric ICU unit, and has been there for the last 37 days as her lungs battle for the next breath. I wont go into details, but in my mind, I picture a little girl in bed resembling Doc Oc with all the wires and tubes going in and out of her body, greatly outnumbering the 8 appendages our super-villain exhibits. One of the machines that helps support her life is called an ECMO. Two large catheters are placed in her groin, blue blood flows out of one leg, pumps through the machine, is oxygenated, then red blood is returned through the other leg.

This is supposed to give her lungs rest. Buy them time to heal. Build up her reserves to once again breath unassisted. Her parents report that they are rapidly approaching the end to the time she can safely be on the ECMO.

She needs prayers. Please pray that the remaining time is enough to rest her lungs so they may work again as they should. Please pray that her family finds the strength to continue to make the decisions that help Clare strive. Please pray that her doctors and nurses and technicians find the knowledge they need to heal Clare. Pray for Phoebe, who misses her sister dearly. You have been so generous in your prayers and support. We are thriving with both. As hard as Josh’s treatment seems at times: the dreaded clinic visits, the humbling ‘accidents’, the nightly meds, the weekly trips, the puke bucket… there is always someone who needs a prayer that much more. As Benno and Karen (Clare’s parents) humbly quote, reflective of the hurricane, “everything is relative”. As I tell the girls, you may seem ordinary standing next to a super-hero like Spider-Man J, but imagine how vital you are to a 3-year old toddler wanting a Popsicle out of the towering freezer!

Yesterday, Monday, at 10 a.m., was a moment of silence, a time to reflect and hold Clare in one’s thoughts and prayers, as she underwent another bone marrow aspiration at that exact same time. The results came back clear. She remains in technical remission, but she still needs our prayers. Your pleas and prayers are so powerful, if you can, please give them to Clare today!

If you so desire, you can visit Clare’s site at her Caring Bridge Page:

Saturday, September 10, 2005

Stickers, stickers everywhere

Have I ever told you how much Joshy LUVS stickers?

Stickers, stickers everywhere,
Stickers, stickers in my hair!
On the windows,
On the door.
I even put them on the floor!

Oh yes, have you happened to check out the pictures and spot the pic of Joshua’s head plastered with a few ‘here and there’. How long do you leave them stuck to your front windows for all the neighbors to admire? And what about the dog's big fuzzy butt after he gets up from his slumber on the floor that once housed that same sticker like a leech ;-)

It’s a wonder that he has any stickers left at all. Well any unstuck stickers. And believe me, Josh got LOTS of stickers in the many cards he received for his birthday. If it weren’t for Mommy and Grandma F stashing some of them, they’d all be wallpapered to the nearest inanimate (or animate) object that Josh could find! That may be the ONE sole highlight of any of Josh’s trip to Pittsburgh week after week: the stickers he gets from the nurses. And who can say no to those flashy baby blues when he reaches in the basket and pulls out more than he’s allowed?

If you tell him two, he’ll flash you three fingers and bargain for more.
But you better watch close, as he counts them to FOUR!

So what brings me to today’s post? Could it be the dog with the sticker on his butt?

You thought I was joking?

I want to say: Maureen, thank you for signing Josh’s guestbook, I am SO glad to hear everything is relatively okay for you now and you are safe from harm’s way. We have been praying for you and thinking of you daily. You have a contagious outlook! Thank you for all your prayers, even when you needed the prayers yourself!

In other news: Jon and I celebrated yet another anniversary this week. Too bad we forgot it... Yesterday as I sat on the front porch with the boys chatting with Jon’s parents, I see Jon pull up and get out of the van with a bouquet of flowers. My first thoughts were: he got them because he knows I’ve been having a hard time since going back to work or maybe he’s trying to earn brownie points. He gets up on the porch and wishes me a Happy Anniversary.

D’oh! How could I forget? And how special that he remembered, albeit a few days late, but it was more than I could muster. I think that was a gift in itself!

Today: Kaitlynn played in a Make-A-Wish softball game. It was an exposé to kick off the MAW tournament held this weekend. We got ourselves a couple of awesome ‘Share the Wish’ tie-dye tee shirts, but alas they didn’t have any in Joshy’s size.

Anyway: Josh had an oral chemo yesterday. MTX. It’s the stuff he usually gets shot into his spine, but this time, in anticipation (and empathy) of the intense months ahead, he gets to swallow it. We have to crush it, like his other nightly meds, and disguise it with yummy cherry syrup. It’s not much of a diversion, though, as Josh still hates taking it, or any med for that matter. We have resorted to giving him his own large syringe filled with water to take as a chaser. Just a side note (and Grandpa can attest to this) Josh also likes to use it as a squirt gun, and he insists on having it filled over and over and over. So, just as the spinal MTX makes Josh nauseous, so do the pills. All 5 of them. Not an hour later, Josh comes running to us with his hand over his mouth. “I gonna poo’k”, he says. Jon runs for the bucket, I carry him to the kitchen. False alarm. But he walks around the house with the bucket in hand, just in case, making several unsuccessful attempts to purge that poison from his system. So now we get more medicine for his poor little body to help counteract that side effect.

Bed Time: This night Josh follows mommy upstairs opting not to fall asleep on the couch as he’s grown accustomed to doing since the day we’ve come home from the hospital.

It’s mommy’s turn to take her meds. Just a single pill. Pales in comparison to the ones I just crushed, but I take it with a swallow of Diet Coke like a trooper. I see Josh look from me, to the bottle of pills, to the can of soda. He thinks that looks like more fun. He grabs the medicine bottle and wrestles with the childproof lid. Maybe mom’s tastes better??? So I think, maybe Josh can try to swallow his meds. I’ve read tips from other moms who have their child practice with mini M&M’s. Good idea, but Josh is too content with just chewing the brightly concealed chocolate!

Stick the single sugar capsule on his tongue, gargle mouthfuls of juice, swallow, chew… Chew? How’d that bugger manage to escape his esophagus? ‘Pill’ after ‘pill’, he manages to swallow the drink, but not the candy. Half bottle of M&M’s later at 11(!) o’clock at night, we call it quits. Well at least we got some nourishment in him ;-)

Monday, September 5, 2005

Childhood Cancer Awareness Month

Hello every one, my computer is suffering some kind of mishap, but for now, I've found a way around it... still need to get it fixed, but too lazy to find my computer discs.

First I want to say I hope all our Louisiana and Alabama friends are safe and sustained minimal damage from Katrina. You guys have been in our thoughts and prayers and we hope to hear from you soon!

Second, hope everyone is having, well... had a nice holiday! We went to a picnic at my aunt's (held by my cousin) on Saturday. Josh got to play with some boys his age. It was nice to see him running around and keeping up with the best of them! Today we went to mom and dad's house (Jon's parents) and had a wonderful time! We loaded Josh's truck up in the van and lugged it over there. He drove it all around the back yard and didnt even run over grandma's flowers once! I think he may have *drove* grandpa nuts though, as they were collecting the balls in the yard. Josh was driving and grandpa was navigating. Josh may have gotten steering down, but not listening ;-)

Of course I have more pics.

On another note -- I wanted to let everyone know that September is Childhood Cancer Awareness Month. And something I just learned today is that on Monday, September 26th, Chili's restaurant will donate 100% of their profits to St. Jude Children's Research Hospital! Now I know that Josh doesnt go to St Jude's, but everything that our hospital knows, stems from the research done there. Although the cure rate for Josh's type of cancer and risk category may exceed 70%, 10 years ago he may not have been so 'lucky'.

For that we are extremely grateful.

However; there is still 3 out of 10 children who suffer a relapse and dont have as much luck.

And for THAT, we will not stop until there is a CURE.

Also, for those of you that may not prefer Chili's or maybe can not get away that day, Chili's is also hosting something called "Create a Pepper". During the month of September, for a dollar you can purchase a pinup of a pepper to color and have displayed in the store! Or if you go online you can buy your own Create a Pepper Fight Childhood Cancer tee-shirt.

Here's a little clip from their website:

Last year, Chili’s raised more than $2.5 million through its 850 company-owned and franchised U.S. locations. For more information, to create a pepper online, or to purchase a “Create a Pepper” t-shirt, visit

THIS JUST IN -- in case you are looking for the older pictures ;-) here are the links to their folders:

Joshy's 3rd Birthday

Josh's original photo album

and the new one:
Labor Day and more

Saturday, August 27, 2005

Spinal Week

Hello everyone, and many thanks to everyone still checking in and also signing the guestbook to remind us how much you care!

Josh had a very good visit Thursday! Early start again (we left Erie just after 4, yes, in the morning) but we were home soon after 2. Josh is getting less and less anxious about his visits to Pittsburgh, and the biggest stress of the day was having the tape removed from his port when they were all done. In fact, I think he cried more when the nurse deaccessed his port than he did when she stuck the needle in!

He had another Spinal Tap this week, and it seemed to go so much faster this time around. Josh was in good spirits before he went in, and we hoped this was a good sign when he woke up. Sure enough, he wasn't nearly as groggy and cranky this time around, and we were out of the post-recovery room and on to our clinic visit before we knew it.

Once we were settled into one of the onc-patient rooms, a gaggle of people (Josh's doctor and child-life specialist and nurses) came in to sing Josh a Happy Birthday, complete with a colorfully-wrapped present. This has been one birthday that never ends! He was delighted to find a new (electric) Spiderman toothbrush and yet another, but still different, action figure toy.

Josh's counts were down *slightly* from the ER visits, but the doctor called the hospital at home and confirmed that the staph infection is gone. Looks like we caught everything early and beat that thing fast!

However; I woke up this morning to a feverish Joshy laying next to me. Jon informed me this morning that Josh was up getting sick in the middle of the night --- daddy fell asleep on the couch with Josh last night watching late-night movies. So once Josh was up I took his temp. Once again we are watching for it to hit that magic number, hoping it doesnt rise much more. Right now it is hovering over 99, but hasnt gone above 100.6 ..... We'll be sure to keep you posted as to what tonight brings. He's napping now. Hopefully he wakes up a new guy!

In other news... I have a little snippet I thought I'd post. A friend of mine (thanks Alina!) sent it to me, her witty brother had authored it as a joke to her, but with Josh's birthday just past, I thought this was too familiar and struck my funny-bone. I couldnt resist!

***names and places were changed to protect the inocent :-)

Dear Friends,

I hope you kept the receipts for the gifts you bought Josh. We dressed him in the spider man outfit and it doesn't work. I tried sticking him to the wall and he just slid down to the floor, quite fast actually. I tried throwing him up on the ceiling and again he did not demonstrate any spider like abilities. He just hit the ceiling and dropped like a brick. I even gave him a second chance to see if he would land gracefully.

Again no. Big thud and loud cries - no witty banter.

Also, whereas he does produce fluids that can shoot out, they are not sticky or web like. Some are more goopy and they stink. He can shoot others quite a distance but he had this ability before the suit was put on him.

I think we will be returning the suit. On another note, I am not allowed home alone with the kids anymore.

Tuesday, August 23, 2005

Joshy shares

Hi everyone -- another quick update. Yesterday Josh was back in the ER. On Josh's birthday we got a call from Saint Vincent's ER (our local hosp.) they had said Josh's culture from the other day had shown a Staph Infection in his urine, they werent sure what Children's (of Pittsburgh) would want us to do, but they would fax the report to them and get back to us. On Monday we waited by the phone to hear from Pittsburgh. When the four o'clock hour came and went I called them. Turns out they never received the fax from Erie. When I told them Josh's cultures revealed a Staph, they told us to pack our bags and head to Pittsburgh for an admission. However, not five minutes later the phone was ringing again, they got St. V's on the phone and seen that the staph was in his urine and not his blood, so they sent us to the ER here to have it rechecked. After about 4 hours they said they wouldnt know for sure for a couple days to see if the cultures grew anything, but that his urine looked better than the other day. Come to find out, the other night he had a UTI they never told us about. So we should hear something by tomorrow night hopefully, in time for our scheduled visit back to Children's on Thursday. Other than that, he seems to be doing well. Still being the picky little eater, but tonight, Grandma and Grandpa were over for dinner and Josh wolfed down the steak on his new Spiderman plate! Fell asleep during dinner, woke up cranky -- yep, things are normal as can be ;-)

In other news, when Grandma and Grandpa left tonight, Josh gave Grandma a Spiderman action figure to take with her tomorrow to her own doctor's visit. He didnt want her to go, but we know that he will make her feel all better for when she comes home!

Always our little superhero! thinking of his Grandma and sharing his precious Spiderman so she wouldnt be scared.

We love you Josh!

Good luck Grandma, see you tomorrow!

Sunday, August 21, 2005

Three at last, three at last

Happy Birthday to Me!
Happy Birthday to Me!
Happy Birthday Dear Joshy
Today I turned 3!

What a week I have had full of wonderful surprises! My Grandma F. hosted a birthday-card-drive for me, that started coming days ago and boy(!) did I get a lot. I can hardly believe how many people from all over the place are thinking and praying for me! To date, we have 26 cards and my Grandma said she will save them for me and will add them to the scrapbook she started. Thank you to everyone who sent me something -- I especially loved all the stickers -- even if mommy didnt like them stuck all over the windows love

On the actual day of my birthday, which also happens to be the day my Great Grandpa 'Billy Joe' would have turned 86, mommy and daddy decorated the house and back-yard with all kinds of Spider-man stuff! My Grandma and Grandpa F went and found me all kinds of cool stuff from the party store. Red and blue balloons, spinners, banners, blow horns, a HUGE Spiderman floating balloon, you name it, it was spider-man. Even a Spider-Man ice cream cake from DQ. Dont worry, lots of pictures were taken today.

The party started outside, and the older kids loved swimming in the pool. It turned out to be a perfect day for it. My favorite part was coming in for the cake and presents! Grandma and Grandpa brought the ice cream cake too, and daddy got me a superhero cupcake cake, it wasnt Spiderman, but hey! it was blue and the Incredibles are still awesome. So I had cake and ice cream, or maybe I just had frosting and frosting. Well, I ate, that's gotta count for something!

Afterward I got to open a whole bunch of cool presents. And guess what they were? More Spiderman! Spiderman chair, and Spiderman clothes, and Spiderman tent, Spiderman punching bag, Spiderman bouncing ball, action heroes, sleeping bags, sneakers, slippers, coloring books, crayons... Dont worry, it wasnt all Spiderman. I may be obsessed, but a boy's gotta draw the line somewhere. I also got a super cool matchbox car ramp, a Scooby Doo movie starring Batman, a neat remote control boat for me to play with in the big pool, more clothes and more clothes and, OH! -- this really neat horse that I can wear and pretend I'm a cowboy --- mommy took lots of pictures, I look so cute!

Finally, with the help of all the kindhearted people that sent money-gifts in their cards, mommy and daddy got me an awesome motorized truck! And if you ask me, I’m a pretty good driver. But just don’t ask my neighbor…. Or at least wait until her flowers grow back…

Anyway, THANK YOU to everyone for making my day so special. Mommy said she will post pictures soon and everyone can share in my day and we can remember it all forever.

Wednesday, August 17, 2005

return to "normal"

REAL quick, as I wait for Jon to get home from taking his mom home. We just got back from a five+ hour visit in the ER. Yes, Josh's fever hit the *magic* number and then some. By the way, the magic number is 101. If his temp reaches that at any time we are supposed to take him in. And when he woke up around 1:30 it was 101.9 -- auxillary. Some say add a degree for temps under the arm and some say not... at any rate in we went. We made that middle-of-the night call to Jon's mom to come sit with the kids (Kaitlynn spent the night away). Ugh! What a saint to be drug out of a comfy slumber to try and rest in a chair all night! Thank you Mom, you really have been there for us whenever we've needed you!!!!

So, after bloodwork, x-rays and urine cultures, they gave him an IV antibiotic drip (that seemed to take FOREVER, as we were SO ready to go home at this point) but of course no difinitive answers. So they sent us home on watch. His counts were down again, so we also have to watch for any of these signs too. We're supposed to call Pittsburgh by tomorrow and schedule a follow-up. We'll see if we can make it til next Thursday when we are scheduled.

Our first unscheduled ER visit since dx, and only a couple screw-ups at the hospital.... the 'vampires' came to draw his blood via an arm stick and we had to send them away, reminding them Josh has a port, so they called for the IV Team. Secondly, they tried to give Josh Moltrin for his fever, but he is NOT allowed anything except Tylenol (because the others tend to thin the blood and with low platelets this could cause bleeding). I guess we made it out in one piece. Poor Josh was ready to go home before the intake nurse was even finished with his vitals. What a brave little man.

Pray that whatever is 'buggin' him leaves quick and he's back to his normal self in no time -- well as normal as we have grown to accept.

Tuesday, August 16, 2005

fever watch

We're all fighting a bug going around the house. It started with Nathan about two weeks ago. Then Josh got a runny nose, but not much more. Now just about all of us has had something or another, sore throat, cough, tummy aches. Kenni has a fever today. Jon has a sty or something in his left eye. And again Josh is not feeling 100%. A little cough and a slight fever that we are monitoring closely. If it gets above a *magic* number, we supposed to take him to the ER and they'll evaluate from there. But I'm sure it's nothing more than this stubborn bug hangin' around. He hasnt been eating very much (pre-cold), even Grandpa is having trouble enticing Josh with his favorites. I've convinced myself already that the whole purpose of the 5-day steroid pulses is so that CKs (Chemo Kids) dont starve themselves! Somehow he is managing to hold his weight on a staple of PB&J (sometimes hold the J) and 'chocky' milk (sometimes hold the 'chocky')...

Hard to believe he will turn 3 in just a few days! We decided today that we will hold a nice little bash for him this weekend. Most likely Sunday, on his bday. I dont think he has a clue that he even has a bday coming, despite us telling him, but I know he just loves being the center of attention! Jon seen a Spiderman piñata at K-Mart the other day and thought immediately of Josh's big day. I just know Josh would love it, but think maybe he'd love it too much. How will we convince our Little Man that bashing Bida Man's head in is alright? Hehehehe -- anyone know where we can find Green Goblin?

Monday, August 15, 2005

He's My Son

I've been searching for this song all morning. Not that it's hard to find, just that I couldnt find a site appropriate enough that was playing it. Anyway, it's a touching song, so I thought I could share it with anyone who'd listen. It was written by Mark Schultz, who's son also had Leukemia. I guess that makes this song that much more appealing. Just call me a sap. Anyway, here's the link:

He's My Son

The webiste is that of yet another Leukemia boy, but his mother gives permission to link to his site to share the song. I'll update more later. House is kinda quiet right now, Kaitlynn is at a friends house, Halie and Joshua stayed the night at Grandma and Grandpa F's. Nathan is still sleeping and Kenni is upstairs playing Nintendo. More later, I promise...

Sunday, August 14, 2005

Extra Extra... read all about it

Real quick post, as some of you might notice the hour of this post... Another sleepless night. Some days dontcha just wish there was a simple on/off switch to control all the thoughts occupying one's mind?

So at the three o'clock hour, I find myself sitting in front of this monitor reading the online newspaper. So much better without the black smudges to tend with. I see an article in which the company we just bought our van from, went out-of-business. How do you suppose that works??? Of course as our luck would have it, it was financed through said belly-up company. Anyway --- further boredom, brought me to do a last name search and turned up the following article ran in the paper last month. I thought it was a nice piece. The benefit was organized in the beginning days of Josh's diagnosis, unbeknownst to us, while we were still in the hospital. The story was focused around the idea of a hodge-podge-family of softball players pulling together for one boy's courage. As for my family, for Jon's family, for OUR family, for our extended family and for our adopted families, I hope one day you will know how much we have and will continue to appreciate all the love and support you have shown us during these wearisome days!

Ballplayers go to bat for boy

'I wish it were fall." My friend trial-ballooned that thought, then snatched it back.
We're just weary of wilting when we walk, sweat rivulets snaking down our cheeks, sopping our sleeveless T's.
Marian Fromknecht and Brenda Horvath wish they could tinker with the calendar, too. Flip it back six weeks, before they learned that Fromknecht's son, Joshua, has leukemia.
Joshua is the fourth of Marian and Jon Fromknecht's five children. Trouble surfaced when Joshua, whose favorite superhero is Spider-Man, had trouble walking. The doctor thought it was juvenile arthritis.
Then Joshua couldn't walk. Blood tests were followed by a same-day call that the results didn't look right.
On May 31, Joshua was admitted to Pittsburgh Children's Hospital. Doctors did more blood work, discovered an enlarged spleen and lymph nodes and ordered a bone biopsy. The next day, the Fromknechts learned Joshua has leukemia and had to start chemo. Immediately.
They had packed a change of clothes, but they stayed in Pittsburgh for nine days.
Horvath and her husband, Joe, jumped in to care for the Fromknecht kids, shuttling them to ballgames and altar-serving duties. The men grew up together and the couples consider themselves family. They play euchre, spades and Texas Hold 'Em together. They cheer at their children's ballgames and attend classic-rock concerts.
Marian Fromknecht, the breadwinner, is on family leave from her job as an auto-CAD designer. Her husband is doing odd jobs. They just bought a used van, with over 100,000 miles -- serviceable for trips to the drive-in movies with the Horvaths but questionable for weekly hauls to Pittsburgh for Joshua's lengthy treatment.
I've written this story before, about other families hurled into an altered state after being popped by that six-letter word, cancer. That's why I'm walking in the Relay for Life this weekend. My husband Tom, who died from prostate cancer, would have been 64 on Aug. 21 -- the day Joshua turns 3.
Hundreds of Relay walkers raise money for the American Cancer Society.
Slam-A-Thon is a smaller effort to go to bat for one ill child. The fundraiser takes place today from noon to 4 p.m. at the softball fields behind the Boys and Girls Club, 1515 East Lake Road. Theme baskets and other prizes will be raffled. There will be Dino Jump, a pitching machine and food.
Teams from the North Coast Sports Association, a girls' and boys' softball league, will collect pledges for every pitch they hit. About 370 children -- including the Fromknechts' three girls -- play in the league. When Joshua is in kindergarten, he'll play, too, as will his brother Nathan, now 21 months.
Alexa Markiewicz, association director, organized the fundraiser. "I thought, what if it were my child?" she says.
Haven't we all.
Donations can also be made for Joshua Fromknecht at any Northwest Savings Bank.

LIZ ALLEN can be reached at or at 870-1735.

This content provided by Times-News. Last changed: July 17. 2005 12:00AM

Saturday, August 13, 2005

Nakee Heads

I know I owe everyone a BIG update, and sorry for keeping everyone hanging... but just so you know, things are going okay right now, I will update on Josh's last visits when I get more time, but for now wanted to let everyone know that the KODAK PICTURE site has been refreshed and now has the promised pics of Josh's nakee head and his semi-matching brother and fathers as well. Also pics of him with his bear Spinoza complete with Josh showing off his port (Spin's port, not his..)

Thursday, July 21, 2005

...and Spinoza makes four

Today was an EARLY day. Last week it was decided that from this point on, Josh would be put to sleep for the spinals. So last weeks spinal was postponed to today. And since an Anesthesiologist is needed, the procedures have to be preformed in an operating room. Anyway, the only slot we could get for this week on short notice, was 8 o'clock. Which would be alright if we didn't live 2-1/2 hours away, and if they didn't require you to be there an hour and a half BEFORE the procedure. So we had to be in Pittsburgh by 6:30, which meant we left home at 4... let's not even talk about when we had to flop out of bed...

But I'd do it a thousand times over!

Josh had such a great visit - comparably.

I can hardly believe how fast the first hour and a half went. I thought it would be a lot of waiting around, but things kept moving from one thing to the next. Josh brought his new friend, Spinoza, with him. Spinoza is a bear presented to him by the Moose Club on the day of the benefit. It has quite a few tapes that correspond to different occasions: stress, sleep, play... He has an on/off/volume knob on the left side of his chest, which just so happens to be the same side Josh has his port on ;-) See where I'm going with this? So Josh calls this little red knob, Spinoza's Port - just like his. Josh wasn't too thrilled with having his port accessed again, but the nurse had gone and gotten Spinoza a hospital ID and with Spinoza, Mommy and Daddy by his side, the needle was in before he knew it, and considering the amount of numbing cream I put on, I don't think he felt a thing, he didn't even flinch when it went in this time. He was more anxious about it being done, then the actual act. So with the port accessed, his vitals done, the meeting with the Anesthesiologist out of the way, and consent forms signed, we were off to the OR.

The actual procedure was done in less than 20 minutes. Before they put him under I was allowed to go in the room with him. While on the table, the Ane' let Josh push the Propafol though his IV. He squeezed half through - still awake, another quarter - still awake and reaching for me, but getting wobbly. The Ane' pushed the last bit through and out he went. We laid him down on the table, I kissed him good luck and went to wait with Jon in the waiting room. Before we knew it they were done and were wheeling him to the recovery room. Now *more* waiting, in a different area, the same room we waited when he had the surgery to place his port. This probably was the longest stretch - waiting for him to wake up. I found myself dozing in the chair. So did Jon, only he got up and went for a walk -- he said he didn't want to snore in front of everyone - LOL. About 10 phone calls later, the phone finally rang for us. Josh was stirring and we were allowed in the recovery room.

From there we sat an additional half hour or so while they monitored him a bit more. Then we carried him off to yet another waiting room. This time Josh had to drink something, or eat a Popsicle and be able to keep it down. Half a Popsicle and one Dora episode later, and we were finally on our way.

Now we headed down to the 4th floor - 4B - to the oncology clinic. Sitting in a regular room since he wasn't having his spinal there, Josh didn't seem as nervous as usual. He still had the line in his port and we had found a surgical mask to add to Spinoza's attire. Jon and Josh sat on the table playing with the Legos Spinoza carried in his backpack. The doctor came in: gave him a once over, the nurse was in: drew his blood, removed his line, and before the results came back, Josh was ready to go! I joked that he wanted to leave before anyone changed their mind and wanted to stick him somewhere else :-)

Off we went, and Josh was in very good spirits, thanking anyone that passed us by!

On the way home Josh fell asleep as usual, we had to wake him up when we stopped in Grove City (the half way point) to have lunch. Remember, Josh isn't allowed to have anything all day long on the days he has spinals and is usually staving at this point.

As we sat down for lunch, Josh said he had to go potty. And BOY(!) did he mean it. Too bad mommy and daddy weren't fast enough getting him there as he had an accident before we made it in. Believe me when I say this, next time he yelled that he had to go -- we ran! Literally. We had to stop a couple other times before we made it home and stopped at Wally World to buy a new pair of shorts and some Good-Nights. The next day the doctor called with the results of his blood work and asked how he was the rest of the day. I mentioned the diarrhea and she didn't think it was a side effect of any of his meds. Silly me - I was thinking it was from the Chemo. Or maybe the sleep-juice... So she thought maybe he had a small viral infection and told us to watch for a fever. Although, just before she had said that his ANC was 3600. Which is GREAT. Anything under 1000 and we have to be extra diligent about infections.

So next week he starts his new phase. But will have to have another spinal since last week was pushed back a week. He will begin a 5-day pulse of Steroids, which may be a blessing in disguise and get him to start eating again. I don't know how he's holding his weight relatively steady on a diet of Popsicles, pretzels and milk! Also he will begin to take an Oral Chemo at home. This next phase will last 7 weeks. I will let you know more as I learn.

Thank you everyone for stopping by and seeing how Josh is doing still. We love reading your comments in his guestbook and know that someone's actually listening to me ramble :-) I'll be sure to post more pics soon. Daddy and brother got semi-matching hair cuts in honor of Josh's. And I'll be sure to post a pic of Josh and Spinoza too, that way you can better picture him when I go on and on....

Oh I almost forgot to mention -- it was after 5:30 before we got home. *Sigh* it was a LONG day but OH! so worth it.

Friday, July 15, 2005

hold the spinal...

Today was an uneventful trip. Josh was supposed to get his third Spinal Tap of this phase, but instead, because of the bad experiences he had the last two times, they sent us home and rescheduled the LP's for the following 2 weeks. So Josh was happy to escape clinic with a mere port access and once-over (twice ;-)) by his [two] onc-docs.

Just before we reached Pittsburgh though, about a half hour before, Josh started to get real anxious and kicked, cried and screamed the rest of the way. He just kept asking to go home and cried that he hated me.... I guess it wont be the last time. So anyway, it was nice to have a nice easy appointment. I'll never forget the look on Josh's face when Dr. Sara told him she wasnt going to touch him!

On the down side - Josh will now have to go to the operating room for future Spinal Taps so that they can put Josh to sleep beforehand. Well -- when we think of it, it's not really a bad thing. It may take more time and staff, but in the end, our Joshua will walk out of there less scared and ready to face the next visit with that much more bravery!

So next Thursday we have to be in Pittsburgh by 7:30. Yes! in the morning. *Yawn* We will have to leave Erie around 5:00. After Josh wakes up and recovers in the post-op room, we will head up to clinic for his check-up and blood counts.

Speaking of which. Thankfully his counts rose this week, and he did not need the blood transfusion after all. So even if they fall this coming week, we should still be within the acceptable limits.

Again -- thank you to everyone that continue to pray for Josh. We just know he will make it through the next three years like a champ and we pray ourselves that he finds the strength to continue on with the meds he detests taking and the pokes he's growing to accept. And we pray for our family and friends for all the love and support they offer us during this hard transition into this cancer-world we now call reality.

Tuesday, July 12, 2005

perfect heads dont need hair

Well today was a big day for us. Josh has been losing his hair little by little every day. But it's only been thinning out here and there. Today while I was giving Josh and Nathan their bath it started coming out in patches. So off the rest of it came. Gotta admit though, he's still a little cutie -- and HEY, I think it brings out the blue in his eyes ;-)

He's been tired lately, I think maybe his counts are coming down. Last week his Hgb (Hemoglobin) was just below 8.0, they transfuse if they are less than 7.5 or symptomatic. Today I also noticed that he was breathing faster, so wouldnt be surprised if he gets another blood transfusion this week. Just so you know, this is totally to be expected as one of the new medicines he is on this phase will cause his counts to drop.

Before I sign off today I want to thank EVERYONE for their thoughts and prayers and for stopping by to sign the guestbook. We're overwhelmed by all the prayers: from Kentucky to California, Maryland to Florida, Louisiana to Virginia, Mid-PA, East-PA and of course from everyone here in Erie that come to visit Josh bringing all their hugs and kisses. Oh! and even a thank you for the Eskimo brought over by Grandma and Grandpa F. sent all the way from Alaska!

You can still check out the photos on his Kodak Site as I added two new pictures this evening.

Saturday, July 9, 2005

Let the shaving begin!

We just got home from another softball game. Kaitlynn's team and Halie & Kenni's team both played at 1:00. While Jon coached the little girls, I watched Kai as best I could while I chased after Nathan and Josh. We werent there long before Josh was wore out and fell asleep in my arms. Heaven only knows how he can sleep through all the screaming :-)

Nathan, as patiently as he doesnt know how to be, sat in the stroller wishing he could find something to get into. Oh! that boy is such a handful. This morning we dubbed him the Devil in Diapers!

Anyway, they're wrapping things up for the Slam-a-Thon benefit. I can still hardly believe how fast they put everything together and it promises to be so much fun! OH! I almost forgot to mention, Palermo's Deli has generously offered to donate all proceeds from July 16th (the day before the benefit) to Joshua's Fund!
and Shhhhh... here's a little secret... we are not-so-subtly trying to convince Jon to sell locks of his hair this day -- thanks Joe for the suggestion --- hehehehe, hey, he was going to shave it all off anyway ;-)

Be sure to click here for even more pics of Joshy

Thursday, July 7, 2005

Dr Jeckyl? or puke?

Josh had another clinic visit today. Brenda went with us this week while Jon worked at home. We went in armed with all Josh's Super Heros to distract him from what he hates so much. He didnt seem as anxious this week. I thought maybe since Brenda was with me instead of Jon, he was thrown off track. But it didnt take him long, and one look at the scale, to realize what day it was. Josh would recieve his second spinal tap (LP-lumbar puncture) of this phase (Phase Two - Consolidation - duration: 4 wks). The nurse came in to access Josh's port, as usual Josh was not happy. It's so difficult for me to watch him go through such discomfort and hear him call to me for help, only to sit there and help them poke him. Thank God for the port which makes everything that much easier. So they drew his blood and hooked him up to the IV, getting him ready for the LP. Today the wonderful Child Life Specialist was there to help distract Josh with her own bag of goodies. For whatever reason we didnt see the doctor this week, Nurse Ronnie would do the procedure. It was decided after last week that they would try Ativan with the Fenanyl instead of the Versed which Josh had a bad reaction to the week prior. It didnt take long for Josh to get real woozy and we laid him down for the procedure. He still tried to fight it, but at least it only took the one nurse to hold him down. After the spinal, Josh wanted chocolate milk which they brought in for him. He sipped on that for the half hour he needed to stay laying, and we headed out shortly after that. Josh was still very unsteady as Brenda and I were walking to the elevators which made him that much harder to carry to the elevators as he swayed in my arms. We were teasing Josh because he had the hiccups. I cant remember the last time I heard him have the hiccups. Just before we reached the elevators we stopped to use the restrooms before our long drive home. In hindsight, thank goodness for that, as while we waited in the hall for Brenda, Josh threw-up all over the place.

So back to clinic we went.

Got him all cleaned up -- puked again. Laid back down in the room for a few minutes. He cried about going home. Figured what the heck -- grabbed a puke bucket, a couple of towels and went on our way. Mind you this whole time the Ativan still hasn't worn off and he is way woozy -- too woozy to walk. Could hardly carry him as he was swaying all over. Get him in the van and he finally falls asleep. Doctor had said last week that the amount of meds she gives him would put your average adult to sleep. She cant believe Josh never falls sleep! Took him an hour plus, but he finally gave in.

Usually we stop half way in Grove City to get lunch since Josh has yet to eat at this point, but this time since he was sound asleep we didn't dare wake him. We got home --- 2-1/2 hours later, 4 hours after the procedure, and Josh is still not able to walk straight. Carry him in the house and he hits me cuz I wont let him walk on his own. Later in the day he would hit Halie then cry immediately after he did it. Wasn't until 7 that evening that Josh started to get his land-legs back. I dont think that the ativan was meant to last 8 hours. I don't think that was supposed to be normal. Oh forgot to mention --- when we first got home we sat Josh on the couch and he pee'd his pants. He was heart-broken! He's hasn't had an accident in who knows how long. And around 5:00 he puked one last time.
I know the week before he was in a total RAGE, but at least it wore off in an hours time... I don't know what was worse? Mini-raged puking wobbler for 8 hours, or Dr Jeckyl for 1....
I imagine next week he will have to go to the operating room. I just don't think I want to see him go through one more time like that.