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!

12 Days of Chemo

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

tree

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
FIVE STEROID PILLS...
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
FIVE STEROID PILLS...
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
FIVE STEROID PILLS...
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
FIVE STEROID PILLS...
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
FIVE STEROID PILLS...
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
FIVE STEROID PILLS...
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
throbbing
eleven ports for pushing
ten hairs a growing
nine nurses nursing
eight scales a tilting
seven buckets for puking
six slim jim cravings
FIVE STEROID PILLS...
four calling cards
three heparin flushes
two spinal taps
and - some - plate-lets - on an IV treeeee!

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 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...

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 ;-)

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.

GIVE BLOOD

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.

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?

hehehe

need I say more?

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!”

What?!

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 ;-)

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!

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!

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…

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.