A Very Long Day 5 Update

Mood: Caffeine-Fueled Optimism

Day 5 of the nightmare was a long day. After talking to a few people, I've learned that people would generally prefer a few posts a day with updates throughout the day than one long update at the end of the day. So starting tomorrow, I'll post updates as I know them.

Pain Update
Andy had a rough night last night. He woke up a few times, made a whine, then went back to sleep. At about 2:30 or so he woke up screaming in pain, inconsolable, despite his 0.7cc morphine every 2 hours. His nurse, who was just awesome by the way, and I did everything we could to settle him down. Eventually he settled down and went back to sleep.

This happened a few times throughout the day. There seems to be an ongoing struggle between the Oncologists, who want to be more liberal with pain meds, and the Surgeons, who want to be more conservative with the pain meds. He is now receiving 0.3cc per hour continuously, on top of the 0.7cc every two hours. As of now, they're thinking this is helping the pain, but is making him more agitated. Sometime soon a doctor will be up to make a decision as to how to proceed. Either his pain meds will change or he will receive additional meds for agitation. If you've ever been around someone on morphine, you know they can become quite agitated.

Tumor Update
It is not 100% official yet, but it now seems as though his tumor is definitely a hepatoblastoma, embryonal + fetal. What this means is that the tumor started out as a liver cell that went "oops!" and didn't die. All cells are programmed to terminate at a certain point, but this one wasn't. So it created more cells like it. Repeat process until he has a huge tumor. Considering the negative aspects of it, this is actually good news. It means it's the most likely type of tumor to respond to chemo, and that once it's gone it won't come back. We'll be 100% certain tomorrow.

Work-Life / Financial Update
I picked up my FMLA paperwork from the office today. It was a good excuse to get out of the hospital for a while, although I really didn't want to leave. I was greeted with some unpleasant news. But I should give a small paragraph of background first.

In healthcare, we have two types of time off: PTO and EMTO. Being a non-managerial employee with 5 years of service, I accrue Paid Time Off (PTO) at a rate of just over 4 hours per 40-hour week worked (even though I'm salaried). PTO is used as personal time off, vacation time, sick time, and holidays all rolled into one. So if I get sick or my kids get sick and I need a day off, that's 8 hours of PTO. When Christmas comes around and I want off Christmas Eve and Christmas Day, that's 16 hours of PTO. Get it? There's also Emergency Medical Time Off. Not sure how much this accrues per pay period, but I have 60 hours of PTO and I think 160 hours of EMTO.

I learned today that since the medical condition is not mine, I cannot use EMTO. I can only use PTO, or take time off unpaid. OUCHY! On top of this, Julie is out of sick time which means all these days off that she's taking are unpaid. (before you panic, please keep reading)

We were given a very generous monetary gift. I cannot say from whence it came, but it should be enough to cover Julie's unpaid time off right now. (You know who you are, and I'm getting ready to call you after this post.)

In addition to this, I've put a few things in motion to hopefully counter-balance things a bit. Some of you know some of the things I've put into motion and they sound drastic, but I'm trying to cover every angle, even worst-case scenario. Don't forget that I am well versed in the field of finance, including personal financial management. I'm just covering my bases and not making any drastic moves.

It looks like Julie will have a telecommuting option, and I have volunteered my time to the Humaine Society of Missouri to help get this setup, since... well... it's my job to know this kind of stuff. I'm yet to get a call from HSMO's IT guy, which means he knows how to get it up and running???

In addition, one of the things I set in motion was for my manager and his manager to try to think creative and come back with a few options. Yeah, I'm asking a lot, but that's what I need to do in this situation. I've talked to them and it sounds like we have a lot of options in front of us. I will return to work next Monday and told them we'd sit down and figure things out then.

So, putting it all together, I think between everyone's offers of helping with the kids, Julie's telecommuting, a few options I have in front of me, and a heaping helping of generosity from a few angels in human form, we'll get through this.

Social Update
Thank you, thank you, thank you, thank you, thank you! I don't know what else to say. We've had friends and family in and out all day. A few of my coworkers were here today, and one of these gentlemen led a heart-felt tearful prayer. If any of these gentlemen are reading now, thank you so much for coming. It meant so much to me.

I've been receiving wonderful comments from my online gaming friends. For those of you who don't know what Ultima Online is, it's an MMORPG (clicky for more info). It's a way I relieve some stress a few times a week, and it has a close-knit community. To my UO friends, thank you for all of your support, and when this is all over and Andy's cancer-free, we're gonna have one helluva virtual kegger, courtesy of WBV and friends! ;)

My aunt has been spending considerable amounts of time with us lately. She's almost become my hospital buddy. :) Becky, I know it takes a lot out of you, and we really appreciate your company.

Life Adjustment Update
People keep asking how I'm doing, how Julie is doing, and how the siblings are doing. Let's face the facts, our life has changed now. But I think we're adjusting well. Julie is getting better, I think she was taking it pretty rough at first. I'll let her post on her own feelings if she so desires.

Joey (the four-year-old) is doing well. Yesterday he came up to the hospital, but since Andy's in the PICU we didn't want him to see his brother. I kept trying to sneak off to come up and check on Andy, but Joey knew exactly was going on. Finally I decided to let him come up. Joey came into the room, told Andy he loves him, and rubbed Andy's head. That's how Joey shows affection to his brother, he rubs his head. It's cute as hell. :)

As we were walking away, I asked Joey if he was scared seeing Andy like that and he said, "No Daddy, I love Andy!" I asked him if he was scared about all the tubes and wires going into Andy, and he probably recalled seeing Mommy like that a few months ago when she was in the hospital, so he replied, "No Daddy, those wires are helping Andy!" Yeah, Joey's just fine.

Emma. At some point, between the age of 2 and 2.5, kids become more cognizent of the world around them. They start to see how things work. Emma will cross this threshold with this whole thing going on. To her, it will simply be how life is. I think she will be just fine.

For those of you who don't want to read my inner thoughts, continue to the next section.

Ok, so how am I doing? I seem okay on the outside, am I okay on the inside? Short answer: it's up and down, but generally yes. Long answer: The hardest part is waking up in the morning. Every day I have to wake up and realize all over again that my baby has cancer. It is absolutely agonizing. Unless you've been through it, you cannot possibly understand. So I wake up at about 6:00am, maybe 6:30am, look at Andy, then go back to sleep. When I'm asleep, I don't have a baby with cancer.

Somewhere between 7:30 and 9:00 (yeah, 9:00!!!), a doctor comes in and starts examining him. This is what makes me get out of bed. But guess what? That doctor gives me good news every day! It may not be earth-shattering, but it's generally good. Today that news was that he is progressing well and may be out of the PICU by tomorrow. As the day progresses, I am greeted with more and more good news. For example, the fact that it looks like a hepatoblastoma. This is good news!

Throughout my day, I am greeted with more good news than bad news. At some point, around 5:00pm or so, I am actually happy and in a great mood.

The calls, visits, e-mails, blog posts, and general support from everyone also contributes to this. I can say that Julie and I could not do this without your support, even if it's just a quick one-line e-mail that reads, "I'm thinking about you, Andy, and your family."

As the evening winds down and it's just Andy and myself in the room, I find myself thanking God for all of the good news of the day, for our family and friends, and for everything we have been given. As you may or may not know, I am not a very religious person, so this speaks volumes.

So how am I doing? I'm cautiously optimistic.

What's Next?
For the blog, what's next is shorter posts, posted throughout the day. For Andy, it's looking like he will probably return to 4 North tomorrow. I would assume this means chemo the following day, and he may be released by Friday. I don't know this for a fact, but this is taking multiple sources of information and putting everything together.

Andy will probably undergo 4 cycles of chemo which will last a total of about 3 months, then will go into surgery to have the tumor removed. This will probably be followed up with more chemo. If you're wondering when he will lose all of that beautiful hair of his, it will probably take 2 - 3 weeks.

Pictures! I know you're dying to see pictures! Many of you don't even know what he looks like. Like I said, I haven't been home so I haven't had a chance to find some good pics of him. But don't fret, they will be posted soon.

Again, thank you all for your support, and I apologize for the long post. And keeping with my tradition on this blog, I'm not going back to copy-edit. Any typos will remain typos. Sorry if this bothers you. :)