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.