Thursday, January 17, 2008

So Long and Thanks For All the Fish!

This site is now closed! This is cause for celebration! :)

To be continued at Keep an eye out there for Andy updates, picking on Greg, St. Baldricks updates, and more!

Thursday, January 10, 2008

Cancer - Boy That Sucked!

There are 11 words I’ve been dying to say since this started: Cancer – Boy that Sucked! I never wanna go through that again!

This will be a long post. And if it seems well-rehearsed, it is. Some of it anyway. Part of my general optimism through all this has been because I’ve been putting together small pieces of this post since the beginning.

But now that it’s here, it’s weird to try to put it all together. So here goes.

Incase you missed The Best News Ever, Andy is now cancer-free!

Thank you. Thank you. Thank you! THANK YOU! I can’t say it enough! Thank you! Thank you to our friends and family who have been there with us. Thank you to our friends and family who have kept their distance because they felt awkward (it’s ok, we understand!). Thank you to the complete strangers who have helped us in ways unimaginable! Thank you to the doctors, nurses, techs, and everyone else involved with saving his life. Thank you to mine & Julie’s bosses who were extremely flexible with us during this whole thing. Thank you to mine & Julie’s co-workers, to whom we will both owe favors for probably the rest of our lives. Thank you to all the charities that helped us directly or indirectly including, but not limited to, Friends of Kids with Cancer, Basket of Hope, Marikle, and many many more. Thank you to God for putting up with my slandering of You while You were busy helping to heal Andy! Thank you to Julie for putting up with my mood swings, depression, etc. as I made it through this trying time. Thank you to Joey & Emma for being extremely well-behaved through this and for all your help with Andy.

Thank you in particular to Patience! This would have been exponentially more difficult without you! And thank you in particular to Greg for helping me keep my sense of humor which was extremely important to my mental state through this. Thank you in particular to Grandpa Kelley. I don’t know how this stuff works on a cosmic level, but I don’t think it’s coincidence that you passed when you did. Somehow it’s like you gave yourself for Andy or something. I dunno. And thank you, on the same level, to Grandpa Key. Kinda weird, like Aunt Carol said, that we got the news of his healing on your birthday.

Thank you SSM Health Care. In particular, thank you Cardinal Glennon Children’s Medical Center. You saved my son’s life. Your mission statement is, “Through our exceptional healthcare services, we reveal the healing presence of God.” Well guess what? You used your truly exceptional (in every sense of the word) healthcare services on my son. And guess what? You revealed the healing presence of God. You and God worked together to save my son. You accomplished your mission with Andy!

The biggest thank you of all goes to all of the grandparents for everything you’ve done. Without a doubt, we would not have made it through this without your help every step of the way.

That’s enough of the Thank Yous. It may take a year or a few years to accomplish, but we will manage to thank everyone individually in an appropriate way. We’ll figure it out, but we’ve been keeping lists!

We’ve come a long way in the last few months. On August 6, 2007, we were celebrating Andy’s first birthday. We were a bit concerned that he was having some eating problems. We were still in a situation to where when our kids got a cold we thought it was close to the end of the world. I would often lie awake at night worrying about what could possibly happen. I knew that having a family of five meant that something would probably happen.

On August 9, 2007, the world came to a screeching halt. We received the news that every parent dreads. I finally knew why I spent so many nights lying awake worrying about my family. The next few days were spent in total horror as I watched my baby hooked up to IV pumps, get knocked out so that he could get a CT scan, get cut open, have a foreign object installed through which he would receive CHEMO! And that was just the beginning.

Over the next week, the world would start moving again. We would receive continuous doses of good news including the news that if he must have cancer, it’s about the best type of cancer possible. We would also realize that we have a HUGE support network of people who really do care about Andy, Emma, Joey, Julie, and me.

Days would come and go. Eventually cancer became a part of life. Then the amazing day would come when we get to come home from the hospital and stay! It really felt like we were being released from jail. It was weird, but we adjusted fairly quickly. By this time it no longer bothered us to see our son hooked up to medical equipment. In fact, nightly we gave him shots and hooked him up to his liquid nutrition, and Joey & Emma even helped! We were in a groove and were cautiously optimistic.

Then the horrible call came from Tucson. It was time to say goodbye to the man who made me who I am today. To this day I’ve been too busy with Andy to be able to grieve. Maybe now I’ll be able to do so. This would set in motion a small depression and a downright hatred toward God. Neither of which would last too long, but would certainly make their mark on my life as well as everyone around me.

At some point, I would realize that I’ve been sharing everything with the whole world! All of my private thoughts were being put into writing for the entire world to see. Maybe I should be careful what I’m saying? No. Screw them. This is for me. If they don’t like it, though shit.

After a few months of being in the groove of things and adjusting our lives, even our holidays around it, the moment of truth came. It was time for surgery. After a few setbacks, he finally went under the knife and that tumor was pulled out. Yet for some reason, we just couldn’t be optimistic. We knew more chemo was to come and that we weren’t yet out of the woods. Despite this, though, a huge burden was lifted off our shoulders. The relief.... Can't be described.

And now the day has come. Chemo is over. Cancer is gone. Because it’s a hepatoblastoma, it will never come back. He's not in remission, he's cancer-free. Our lives are now changed forever. And the “Us” is not just Julie, Andy, and me. It’s Joey & Emma. It’s the grandparents. It’s you, our readers even if we’ve never met and will never meet. We have really changed as a result of this, and I’m sure it’s for the better.

Unfortunately the survivor’s guilt is pretty intense now. It’s hard to be around other cancer patients knowing that Andy’s kicked his. Survivor’s guilt. It will pass.

Another unfortunate is that I now know just how common cancer is. I bet someone close to you either has cancer or had cancer. Nevermind the kids at the hospital, I still know of more cancer cases than flu cases!

I look forward to “rejoining society” for lack of a better term. It may still be some time before we return to normal, but I’m sick of being a “special” family and having a “special” kid. I can’t wait to just be another asshole (shaddup Greg). 2008 will be normal. I haven’t had a “normal” year since 2005. I’m overdue. I’m going to work 45 hours a week. I’m going to drink beer and play my drums on Fridays until kids' bedtime when I switch to guitar. I’m going to play golf on Saturdays. I’m going to watch the Rams and the Simpsons on Sundays. I’m going to repeat process the following week. Ad nauseum. And I’m gonna love it.

As for work, I know I’m probably going to spend the next 3 months on call. I know that anytime a crap job or crap project comes up that nobody wants to do, it will be mine. I know that if someone is needed to work a weekend, it will be me. But I also know that I have a newfound respect for my job. It has new meaning. By working late or fixing something when I’m on call, I am contributing to the saving of lives. Kids will be able to live because of me, at least in part. My job is no longer a job. It is part of who I am. I don’t go to work and do my job. I simply do what it takes to help make sure the system is up and running and saving lives. Maybe it takes a couple of hours on a Saturday night. Or maybe it takes 12 the following Monday.

As for my family, I now have a new perspective on them. I’ve always loved them, but I think we all share a very special bond now that not many other families share. If we can make it through this we can make it through anything.

I’ve really enjoyed putting my thoughts on this website (you know I hate the b--g word!). I know it’s weird for some, but not for me. I think it goes back to an assignment in 9th grade English class. But I digress.

Sadly, this site must come to an end. I’m going to leave comments open for another week or so, but will not make any new posts. In a week or two I will freeze this site. It will stay here forever. If Blogspot ever shuts down, I’ll move it. But the record of Andy’s illness and his father’s thoughts will always be here.
BUT…. I will continue to b--g at where I will continue to post occasional updates on Andy (more below by the way) as well as pick on Greg relentlessly. I do hope you join me over at the new website. If not, then I guess this is goodbye. If so, then I’ll see ya there! Be sure to check the new website for St. Baldrick's updates and information!

Also on the subject of my writing, I’m really surprised at the responses. I’ve always enjoyed writing, but my writing style is very strange in a stream-of-consciousness kind of way. I didn’t think people could appreciate it, but they do. I love talking about me! And it's weird that so many people actually enjoy reading it. Very weird.

More than a few of you have suggested that I put some kind of book together. I may do so. I’ve already put together Chapter 1 of a book detailing my experiences through this whole thing. It’s very possible that Chapter 2 will never be written. It’s very possible that I’ll write it and it will never see the light of day. It’s not at all probable that it will be a NYT best seller. But you get the idea. Thank you all for the encouragement! Who knows, it may actually lead somewhere! But probably not. We'll see.

So what’s next for Andy? He will continue to go to the clinic every so often for blood work and the occasional CT. At some point this will end and he will go to the clinic every year until he’s 40. And he won’t know why. And that’s awesome that he won’t know why.

Cancer sucks.

(So long and thanks for all the fish!)

Wednesday, January 9, 2008

The Best News Ever

I was going to title this post "The Best Day Ever" to kinda put a bow on "The Worst Day Ever" but it really wasn't. The best day ever was the day Andy had his surgery. The relief. I can't describe.

Andy's AFP numbers came back. 4. Or maybe 5.

It's official. Andy no longer has cancer!

I'll post more later. For now I'm too excited, shaking a bit, to really type anymore.

Congratulations Andy! You made it!

Wait For It...

Before the CT scan we were 90% certain that he was cancer free. We are now 99% certain that he is cancer free. His CT scan looked wonderful.

We will be 100% certain once his AFP numbers come back. Remember, we want it to be less than 10. If it's not back by the end of the week they'll draw blood again. It takes so long because it's not done onsite, it gets sent offsite.

Andy will go back the first week of February just to say hello to everyone and just see how things are going. No tests, no nothing. Just a check.

In 3 months Andy will get another CT scan. We will then talk about taking out his port. By that time they're saying that he'll be old enough to take a hearing test without being sedated. Yay! So there will probably be a couple of follow-up hearing tests.

The kids will be returning to the babysitter in March if all goes according to plan. I'm thinking we may have our Cancer Sucks party in April or May when it's a bit warmer out.

More in a day or two when we get his AFP numbers.

Tuesday, January 8, 2008

It's Coming! *MODIFIED*

(Modification: It's March 8 not May 8. Sorry)

Saint Baldricks is coming! It's Saturday, May 8 at Helen Fitzgerald's.

For those of you who don't know I've been growing my hair (what little is left) for a few months now. I'll continue to let it grow until March 8 when it will be shaved. I'm already getting a little ratty, but that's nothing yet!

So where do you come in?

You donate to St. Baldrick's to have me shave! My goal is to raise $500 for St. Baldrick's.

More details to follow as time goes on. Just know that it's coming!

Monday, January 7, 2008

Hearing Test & CT Scan

...he had both today. His hearing is about the same. No news on his CT scan but we expect it to be negative.

They also took blood. We'll find out his AFP. Remember we want that to be < 10.

I'm wondering if I'm trying to rush the return-to-normal thing.

More later. My sister is still a dork.

Sunday, January 6, 2008

Bye-Bye Peach Fuzz

Yep. His hair is falling out again. That peach fuzz that was growing is now almost gone. Oh wel. It'll grow back.

One less med! Andy is now off the magnesium! He'll continue to have Bactrim for some time, but it's just the idea that there's one less med. That's awesome.

And Greg... The trivia night wasn't an invite people free-for-all thingy. One of Julie's friends paid something crazy like $200 for our table. We weren't in a position to invite people.

Speaking of which, thank you (if you're reading). We had a lot of fun. I'm just happy we didn't come in last place this time. :)

Happy Sunday to all and to all a good week!