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.


Shannon Ford said...

SUNDAY, JULY 24, 2005 11:02 AM, CDT

Glad to hear your last trip went much better. Hopefully things will continue to go well for you.

shannon ford
corinth, TX
United States

Aunt Meme Stallsmith said...

SUNDAY, JULY 24, 2005 01:27 PM, CDT

Hi Josh,

Glad to hear the last treatment went better for you, honey. Hope they're are that easy. I love you.

Aunt Meme

crystal sweet said...

SATURDAY, JULY 30, 2005 09:23 AM, CDT

hey josh its crystal and travis,

we hope youre doing well because we just found out that we live very close to you! we just cant wait to meet you. you and travis are just going to have so much fun together. just let me know when youre free and we will try to make it over.

crystal sweet
erie, PA
United States


SATURDAY, JULY 30, 2005 09:37 AM, CDT

hi everyone! i hope you all are doing well. and hope that joshy keeps getting better! that way he can enjoy "swimming" in his pool. maybe someday he will put more than his feet in. ha ha ha we love you guys.

United States

Claudia Wyant said...

SATURDAY, JULY 30, 2005 05:32 PM, CDT

Hi Josh, my name is Claudia. I am an online friend of crystal...the mommy of Travis. I am sorry for all that you have gone through and what you will go through in the future. I hope you know what a special person you are and will be in life. I wish you and your family the best.... Enjoy all the fun things iin life you deserve it all!!!!

Claudia Wyant

Shannon McIntosh said...

MONDAY, AUGUST 01, 2005 07:45 PM, CDT

Hi there cutie. It seems like too many of our families in this area are suffering from this disease. You and your family are survivors and sticking together will get you all through this. As my princess has been kicking Leukemia's butt for over 20 months now, I understand what it must be like. Please tell your mommy I would love to hear from her anytime.You take care.

mommy to ree (

Shannon McIntosh
Erie, PA
United States

Maureen Felder said...

SATURDAY, AUGUST 06, 2005 11:29 PM, CDT

Hi Joshua- Been thinking about you, so e-mailed your grandma and grandpa to check on you, Hun. So glad that you're doing good. Just saw the new pictures that your Mom posted and printed one out for our photo album. You are precious, Josh! Keep up the good work. We heard you are a real trooper and that's so important. Our prayers are, that you will continue to improve each day and that in no time at all you will be completely healed. God Bless you Joshua. Please tell Mom and Dad & your brother and sisters we all send our love. Keep up the good job, Buddy. Morris and Maureen Felder, (where our town mascot is "Old Hardhide,Jr." a live alligator, Joshua)

Maureen Felder
Ponchatoula, LA
United States

Alina Lockhoff said...

MONDAY, AUGUST 08, 2005 08:49 AM, CDT

Hey Little Man! Though we have never met, I have followed and waited desperately for details through all of this, it still seems surreal from the other side of the state. Please know that we are praying for you and all your family. Mike sends best wishes and lots of Bida-Man luck :-)

Alina Lockhoff
Palm, PA
United States

Marilyn Koehler said...

WEDNESDAY, AUGUST 10, 2005 10:37 PM, CDT

Hi Little One,

I have been praying for you and your family for a long time now. I hope all is going well for you and soon you will be back to your old self.

I know it has been very hot there and I hope you are keeping cool. I hear you have been a real trooper lately and doing much better. I am so glad for that. I love you even tho you really don't know your Aunt Marilyn. It has been a long time since I've seen you so I am sure you don't remember me. Just remember that you will always be in my prayers. You are the GREATEST!!!

Hope you have a GREAT day!

Love Always,

Aunt Marilyn

Marilyn Koehler
Louisville, KY