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.

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!

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

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.

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.

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?

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...

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 liz.allen@timesnews.com or at 870-1735.

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

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..)

Kodak Pic Link Here!

...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.

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.