CLINIC LAST FRIDAY

Mike took Johnny last week for chemo and his counts were strong! All of his meds, oral and IV, are at the same a$$-kicking dose they have been at for the past few months. He's been home with me all week -- almost. I sent him to school Wednesday only to pick him up from the nurses office later that day complaining of chest pain (he started off the day with a nose bleed). He stayed home today and slept until 12:30PM then pretty much laid around all day. Tonight he told me that he is ready to go back to school tomorrow, so we will see what happens.

Mike thinks he's 'playing me'. I think it's the higher doses of meds, they have increased so much that he's practically bald again and he's on DEX (steroids) for a week -- that stuff will keep you up at night. If he were really 'playing me', he'd be up all day bugging the heck out of me, but he's not. He's not even getting out of bed.

However, each day his strength and energy level increases! Johnny's teacher's and I were talking about him today and agreed that he doesn't 'understand' that he's on chemo and it will reak havoc on him. He MUST go 110mph 24/7 and refuses to let a little thing like 'chemo' be an excuse for him to take it easy. As far as Johnny is concerned this whole 'cancer thing' is just a footnote in his life story.

oh yeah, he won first place in his division at the last contest...



Auntie Liz got second!

I DON'T NEED A HAIR CUT!

REALLY?


really?

I guess I just can't relate with the kid. I mean, I've never had to shave my head before, so it's a snap for me to say, "Let's get your hair cut", but come on. I'm not asking him to shave it bald for heaven's sake, just clean it up a bit.

WHAT I DID ON MY CHRISTMAS VACATION: AN ESSAY by Julie Romano

I survived! WOO HOO!

We had a nice time. But truth be told -- two weeks is about 7 days too long for me. The first week was fun, we had nice weather and spent time outside, but sometime during week two we lost enthusiasm and started getting on each others nerves. It was cold and windy, so we spent most of our time indoors. Hats off to our parents for putting up with my sister and I growing up in MI -- and enduring the long winter months we were all stuck inside!


Johnny is doing very well. He had a few office visits since the last post. His chemo dosage is increasing with his growth at an astounding rate and his counts have been steady, that says he can tolerate the higher doses. Since he is nearing the end of treatment, it's like
an extra 'boost' to kill any dormant cancer cells! However, the higher dose hits the little guy physically pretty hard the next day. He feels and looks like crap for almost two weeks after chemo. It gets worse -- there is yet an uglier side to more chemo that we haven't seen since the beginning of treatment:

his hair

No Joke.

Seriously.

It needs to be dealt with by a qualified professional.

I know I've talked about this before and probably sound like a broken record, but more chemo equals less hair. It's a cold hard fact. Johnny's hair is thin and straw-like in texture, with an emphasis on straw-like. He's totally rocking the Donald-Trump-comb-over look though, and is completely fine with it. Every morning he brushes his teeth, combs his hair, looks at himself in the mirror, shoots double finger guns at his reflection and moonwalks his way out of the bathroom and off to school. He seems pretty stoked with it. Mike and I think it won't be long before he's bald or close to bald. By then all of this garbage will be wrapping up -- maybe we can do an 'intervention' or something and talk him into a fresh straw-free coif to kick off his chemo-sobriety!

At the last visit I asked what happens after September 9, 2008. You know, -- when we run out of the pages and pages of cycles filled with dates of chemo schedules? What then? How often are the clinic visits -- will he still have treatments? Inquiring minds want to know! Well, here's the scoop:

At the end of his protocol/treatment schedule (9/9/08ish), he will get the 'End of Treatment Special Combo package':

Bone marrow aspiration to make sure there aren't any cancer cells lurking in the shadows or in his marrow...

Spinal tap to make sure there aren't any cancer cells lurking in his spinal fluid either -- and refill him with the usual dose of methatrexate

and last but not least... drum roll please...

An IV full of vincristine!

TA DA! What a send off! Come on down to TCH for the 'September End of Treatment Combo Package' while supplies last! WOO HOO! Any takers? anyone?... Buhler?

If all is well, all oral meds will be stopped with the exception of pentamadine, the inhaled antibiotic. Office visits, labs and pentamadine will be monthly for the first 6-12 months. With good behavior he will only have to check in with his parole officer, er, doctor, every three months, then six months and eventually yearly!

We decided not to have an "end of treatment" party or make a BIG deal about 9/9/08. It has been our experience through friends and family members -- that some people relapse a few months after their 'end of treatment victory party'. Call us superstitious, but we're keeping it on the down low. That won't stop us from doing the End-of-Treatment-Victory dance or keep away the perma-smiles for quite a few weeks following -- so be prepared! We will re-access everything at the five year mark aka: 'long-term survivor'... I don't know... It's hard to explain. I guess you have to have cancer or have friends with cancer and have it come back to truly understand our non-excitement about NOT having a full-on ragging kegger...

I'm not trying to be a downer or anything. Just keepin' it real...

Anyway... back to Christmas vacation. The kids and I spent a few days at my sister's to do the holiday rounds with our family and friends. Our 'big' plan was to visit granny early Christmas Eve so we could get home in time for the 'Santa' thing... Of course trying to get five kids and three adults ready before noon was quite an undertaking. The day started by letting the kid's open their gifts from each other, assembling X(insert toy name here), installing batteries, then reading instructions, and reassembling toys for the next few hours. Ahhh, the joy of Christmas Eve!

Funny Tessa story. Remember I wanted to name her 'baby Julie' -- but my sister and Craig insisted on naming her Tessa? Well, baby Tessa has a dark side.

Through the chaos of wrapping paper, bows, ribbons, the search for AAA batteries (honestly! come on TRIPLE AAA's?!?! -- who keeps those on hand!?) the high pitched screams and bickering, Tessa decides to have a melt down. Why now, we have no idea... but nonetheless, she chooses right now to go postal on us. This happened downstairs, amongst the 5 children while the adults hurried themselves to get ready -- I could hear Tessa all the way upstairs, around the corner and through the closed bathroom door as I calmly pulled myself together.

I am a mother of three. A toddler going postal is white noise to me -- this is a learned and highly coveted skill that takes years to perfect. As I made my way downstairs I noted how messy the entire downstairs got in a short 30 minute time span. But again, only skilled mothers can look past the debris and carelessly step over such disarray -- In Search Of... a match to my favorite pair of shoes that mysteriously disappeared. Damn! Where's Leonard Nemoy when you need him?...

Tessa, by the way -- I have no problem calling her by her God-given name now, -- caught my attention. Not because she was going postal and was the exact same color as my favorite bright red Christmas ornament. Mainly because she was naked. I know I dressed this child 45 minutes prior.

Huh. Naked. Going postal. Just throwing stuff -- whatever she could get her little chubby hands on and slamming cabinet doors. Christmas-ornament-red-head-to-butt crying. I asked the nearest kid in charge what was going on -- how, why and possibly who got Tessa naked? She was mad because a sharpie pen was taken away from her. Good call kid in charge whoever you are! When Tessa's mad, she starts tearing her clothes off -- Bruce Banner style -- you know, before he turns into the Hulk -- diaper and all come flying off! What made us laugh, well, Kristin and Craig weren't -- is Tess would throw her little plastic shopping cart so hard it would bounce back and land on all four wheels.

This insolence only infuriated the mini-Hulk! ARRRRRRRRRR!!!! RRRRRRRRRRR!!! The more she threw it, the faster it bounced upright RRRRRRRRRR!!!! until she finally slapped it down on its side WWF-smackdown-style and walked away satisfied that she defeated the evil shopping cart! Naked of course.

Now all we need is to find the anti-serum/potion or whatever it is that makes her turn back into Bruce Banner/cute-little-Tessa... oh, and a diaper -- stat!

We finally made it out and on our way to spread Christmas Cheer! As our Christmas caravan heads and we all start singing in unison: "Over the river and through the woods..." I notice I have a flat tire. Shit. I didn't even make it 5 houses! I'm not just low on air, this sucka was flat. As I waited for AAA, I called Mike and let him know I will be running a few hours late meeting him at his Aunt's house. His reply was, "I was just looking at new cars for you...".

NEW CAR?! It's just a flat tire! I have been in complete denial that my 2001 minivan was knocking on death's door since our trip to CA last summer. So what that it has 110k miles (most of it is highway -- to CA and back)!! yeah, okay, the passenger door-handle has been missing for about a year. So what! There are three other doors we can use! The scratches, or what I refer to as 'custom pin-stripping', run equally down both sides -- bumper to bumper. The customizing was done as someone tried to painstakingly force their bike out of the garage inch-by-inch without asking for any help! From the looks of both sides of the van -- mission accomplished! Okay, and a few, what some in the auto body repair industry would call 'major' dents -- I like to think of as character. I loved the van. Plus it's been paid for since 2003. Not a lot of horse power but I drove it like it did -- which also made it get crappy gas mileage -- but we just replaced the radiator! It still has lots of life! Once we replace the brakes, tires, and shocks it will be good as new. Then the transmission started going. After much hesitation (literally), we traded it in and I now have a brand new car. -- hey, I drove the van until the wheel fell off -- that has to count for something. Surprisingly, I don't miss the van one tiny bit!

And that is what I did on my Christmas vacation!