Monday, July 29, 2013

Released and Relieved: Together Again

A belated Happy 38th Birthday to my wife, Phoebe! I'm sad that I didn't get to spend it with you but I'm sure it was awesome! 38 looks amazing on you (before I noticed, it said "38 looks amazon on you")! Love your (misery) guts!

This should be relatively short and sweet. But I tend to say that and then go on a rampage.

As planned, we got to come home on Wednesday. Spencer had to get his blood tank filled so our check-out was delayed until late evening. Blood takes FOREVER, especially since they had to flush his lines for a few hours prior. Spencer had been confined to such a small area of such a small room that I almost cried when he was unhooked. And I definitely cried when I pushed him outside and he went berserk with happiness. Wind was blowing through his hair! He now has enough hair for wind to blow through!!

When we pulled up to the house, Todd and Sully were on the porch waiting for us and both boys went nuts when the saw each other. It melted my icy heart. The entire night, you could see how happy Spencer was to be home. And even since then, he's been doing really well. Full of energy, eating fairly, drinking well (which is the main concern), and no vomiting! Besides an extra nap or need for a snuggle, he's his normal self. Letting us recover at home was the right decision.

The plan as we approach the 6th and final round of chemo is blood tests close to home (today) and clinic visits on Wednesdays downtown. The usual. We'll be home for Spencer's 2nd birthday and have a little pool party planned just with our immediate families (big 1st birthdays and the rest of the years are laid back cake-n-ice cream). On his actual birthday we're thinking of going to Geneva-On-The-Lake for the day. This birthday means a lot to me. He's kicking cancer's ass before he even turns 2!

This is finals week at school so I'm decently stressed out. Taking an exam today in fact. But I just need to get through this week and then I can enjoy the summer free time with my boys without looming obligations and deadlines. And I'm reallllly looking forward to a mid-month visit from the bride-to-be, Lisa! We have a lot of wedding planning adventures to squeeze into one weekend but it can be done! We're bad ass! I'm definitely pushing my nervous breakdown off until after that visit! Maybe seeing her will be the remedy I need!

OK...time to put my nose back in the books. Wish me luck and enjoy your Monday!

Tuesday, July 23, 2013

Round 5: Smooth Sailing As We Near The Docks

Congrats to my little sis, Jen, on her engagement. Super pumped for both of you!!!

Also, we crossed the 30,000 views mark in a year and a half. Not bad!!

Things have been going incredibly smooth (incredibly, that can't be right) during this round of chemo. Only in the last day or 2 has Spencer really started lagging as far as eating and drinking go. He's moody from time to time and a little sleepy but overall, things look great. He's kicking ass per usual and after things wrap up around noon tomorrow, we should be heading home. The countdown to busting out has begun! Two weeks here has been plenty. I went home for the weekend as I always do and while I count the seconds until I get to leave the hospital, I got misty-eyed in the elevator because Spencer gets left behind. Something I prematurely worry about for his life.

At home, I did get the Sully time I was craving! Besides ample play time and snuggling, I took him to his first Drive-In, we bought his birthday clothes from his Grandma, had a fancy lunch (bananas dipped in chocolate..yeah, he's into that now), and most importantly, I got to see him take his first steps! He took 3 unstable, quick, wobbly steps and looked like a baby deer or a drunk dude. 9.5 months old and on his way. Plus he's waving a lot and kissing. I didn't miss these moments! I got to share them with my baby.

I'm having a rough time, I'm not going to lie. There's something in my chest and in my head and my gut. Something looming. I know I'm on the verge of a breakdown which makes it more annoying. If I know it's coming, why can't I stop it? Why can't I do something to remedy the situation if I'm fully aware if it??  I'm not sure why it's happening now or what exactly is happening but it's happening. Even when I'm having a blast and laughing and enjoying myself, it's still coming. When he was officially diagnosed, I just threw myself into taking care of him and doing what needed to be done but didn't actually let myself feel anything right away. I was more vocal about hating the hospital than I was about hating that my son had cancer.

I don't really believe in talk therapy but I'll probably need to see someone when this is all done. Just to wrap my mind around everything that has happened and how our lives have changed. To prevent future breakdowns which there is total potential for since it's always a possibility that the cancer can come back. I'm told the fear of that never goes away and I dint want to live in fear. I need someone to help me sort out how I feel about my kid having special needs AND cancer, and me missing out on precious time with my baby, the last baby I'll ever have. No job, no control. It's a lot to take. I thought i was pretty tough, a doc here called me Super Mom, but something is looming. You don't imagine this is what life will be like when you're a little girl.

I love my life but it doesn't feel like my life.

It would be nice to get away.
Get on a train or plane and never look back.
Travel for days or weeks or months.
Watch as the seasons change.

But I could take you with me.
Just ask and I’ll take you with me.
And you can see those seasons too.
But from a different view.

"Travel Song" - Evelyn Burke

Wednesday, July 17, 2013

Round 5: A Long Week Ahead

Round 5 of Spencer's chemo started an hour ago. While I'm SO GLAD that it's finally running after a 2 week delay, it's always in the back of my head that poison is running through his body and will be for the next week. But if it wasn't for this poison, he wouldn't be in remission. When people say "Thank God" regarding his treatment, I say "Thank Chemo". And there's only 1 more round after this. The end really is in sight. My only concern is that he's getting a type of chemo he's never had before. Hopefully he'll handle it as well as he's handled everything else. My little hero.

He's been in the hospital for a week as of tonight. Antibiotics for the line infection will wrap up tomorrow and chemo will be done next Wednesday. It's a long time for Spencer to be hooked up, especially since his leashes are short. Hopefully he'll have some visitors to make the time fly by.  We've been watching a lot of movies and playing a lot of catch since his new line was put in Monday morning.  As soon as the procedure was finished, he was a new boy. Well, he was his old self, rather. Smiling, happy, laughing. The fever took a lot out of him but he bounced back!!!

Backtracking to Saturday morning, I also bounced back from my fever. What a nightmare! Once it broke and I took a shower, I was about 85% better which was well enough to drive to Columbus (with stops at Grandpa's Cheesebarn and the GOASIS) for the wedding of my oldest friend. I am so glad I didn't miss it. The ceremony was beautiful, as was the bride. Phoebe was an excellent date and travel companion. We had a fun time at the reception but made an early exit, which was not due to the Kool and The Gang that I suggested not be played. Since I was sick earlier, we cancelled our hotel room and opted to head home. This took some of the burden off my parents who were watching Sully. He's an ANIMAL. It would've been nice for Todd to go (he said he felt bad not getting to show we off) but we have 3 other weddings coming up so having a wife date was a good time. Way better than a fever.

And speaking of all these weddings we have coming up, I am going to be a Matron-Of-Honor!! The lovely Lisa asked me the other day and I couldn't be more honored. Since she lives in Arkansas but the wedding is here, I'll be able to be helpful. I think I'm a pretty good planner so I think I'll be a pretty good MOH. 7 months of planning start now!

Sidenote, I miss Sullivan. With being sick one day and at a wedding another, I feel like I didn't get quality time with him. He's teething and a little grouchy so he needs me. The weather is going to be nice, and not broiling, this weekend so I'll have to make up for it some how. Spencer's chemo is so close to over. I have to keep that in mind. Life will go back to normal. Spencer will go to school (I bought his back pack). I'll go to school. We won't have to pack for the hospital ever again. We can burn his pajamas!!! Both of my fellas have birthdays coming up. And there are so many events...Rock-n-Bowl, Road Rash Bash, Lakewood Car Show, Granger Danger. I'm trying to stay positive even with the weird knot in my chest. I'll deal with that once we're done living in a hospital. 

I'm hoping that when this all wraps up...NEXT MONTH...Todd and I can get away. Living the life we've been living has been hard. I'd love to get an actual vacation but with two small children, it's unlikely. But maybe a trip to Kalahari. We've always loved it there. It's not Disney World or a resort in the Dominican with the pool right outside your door for a week (hate you, Tessa), but we need to be alone. We need to regroup. And we need to do it away from here. But we'll see if that's in the cards.

Spencer is telling me he wants to nap. Think I'll join!

Saturday, July 13, 2013

Drama, Drama, Drama: Drama With A Side Of Drama

Since the very day I wrote my last post, things have been nothing short of insane. I'm so exhausted that my hair even hurts.  I've been so stressed and overwhelmed and now I'm actually physically ill, fever and all. I'll try not to ramble and just lay out the facts. Let's start with Tuesday night (the night before we're supposed to be admitted for Round 5).

I came upstairs to give Sully a bottle and get him settled but I can hear Spencer screaming. Todd tells me he was having a rough time pooping. Minutes later, he throws up and his temp is 101. Todd calls the Oncology doc on-call (as Spencer throws up again). They say we have to come to the emergency room downtown so at 9:30 in the rain after throwing up a third time, off I went.

By the time we got there, his temp was 102.2 and he was miserable. They drew blood for a culture and gave him antibiotics and fluids. He was so warm and very cuddly. They said he would be admitted but decided to let us 2:00am. Wouldn't really know anything else until the culture grew. So after walking through a group of creepy guys, not being able to get out of the parking lot, and driving in a storm, we got home close to 3:00 and Spence slept in my bed.

Had to be up at 6:30am for his clinic visit.  I was exhausted to the core. Didn't even shower. All they basically did was change his bandage and tell me that chemo should be postponed until Friday. His numbers were ready but we had to be sure he didn't have a blood infection. His doc reassured me that just because this happened, it wasn't going to change his mind about possibly letting him go home after the 7 days of chemo. Thank Buddha. I laid down early because I was so drained and get a phone call telling us to pack up and come downtown because Spencer had a blood infection, most likely from his PICC. So Todd and Spencer were off (I had taken a Benedryl so I got to stay home with Porkchop). Straight chaos. Downtown 3 times in less than 24 hours.

By the time I got there in the morning on Thursday, they knew that Spencer did have a line infection and were trying to decide whether to try and save the line or remove it. Chemo will be done in approximately 6 weeks but he still needs a line for 2-3 months...for labs, platelets, blood, etc. If they pulled it, that means less antibiotics but means another surgery for a new line, his 4th line!  It was suggested that we just stay in the hospital from this point on to clear up the infection and roll right into chemo. Doc said we would be there approximately 2 weeks IF we got to go home right after chemo.

Then everything went haywire. Yes, up to this point it was just nuts. Now it was HAYWIRE.

Spencer slept in realllllllly late and was kind of off when he woke up. He was coughing a lot during breakfast and only had a few bites. I thought he was choking at one point. They said his lungs sounded clear but he was not behaving like himself. He fell asleep on my chest and for 2 hours, just whimpered so I called the nurse. This was NOT my little boy. Something was bothering him. They took his temp and it was 102 so they gave him Tylenol and then Motrin. His temp quickly went up to 104.4 and his heart was racing (which meant he was septic, such a scary word). About 10 people were in our room from Infectious Disease to Nurse Practitioners to Attendings and nurses. I was overwhelmed. I requested a margarita and to schedule a nervous breakdown.

He threw up and they decided the line had to be pulled immediately. It was too dangerous to leave at this point. And they wanted to move him to the Pediatric ICU, just for the day. I couldn't believe this. My poor guy! So we get over to the PICU and I hate it. It's like being in an aquarium, you're way exposed and everyone is looking at you. I missed our room and our nurses and was super uncomfortable (and there was no bathroom!!!). Plus, I had to hold Spencer, he couldn't get down, not that he wanted to. They started an IV in his hand which is always a disaster, pulled the PICC, and got antibiotics going. Phoebe came to keep us company and it was the happiest I had been all day. She brought food and Spencer ate some quesadilla and a donut and started to smile and laugh.

Our docs said we could go back to Rainbow 2 but the ICU docs said we had to stay until the morning. I was SO upset. I haaaaaated it there. But I had no choice which seems to be life lately. So we were sleeping jammies or toothbrushes or my pillow.

At bedtime, policy said he couldn't sleep with me on the couch, which he can in our regular spot. He doesn't like the hospital cribs so he usually falls asleep with me and I try to sneak him in. Anyway, I put him in the crib and he whined and cried and shook the bars and was sooooo dramatic. I turned on some cartoons and laid down but couldn't stop rubbing my feet together. I was freeeeeezing. After 2 hours, I realized I wasn't freezing, I was sick. Also after 2 hours, they couldn't take Spencer's crying so they brought in a regular hospital bed for us to sleep in together and at midnight we both passed out.

At 2:00 I was SWEATING. Sick for sure.

Spencer slept in pretty late the next day, too. I had a rough time since I was freezing, sweating, freezing, sweating. And I was nauseated. And needed comfort which I wasn't getting. They kept saying we were going back to our room but it was taking FOREVER. I couldn't put Spencer down and I could barely sit up. Luckily he was OK just cuddling and singing. And a plus was that he had no more fevers and his blood cultures were now coming back negative so the meds worked! After 48 hours of negative cultures, he's good to get a new PICC line so that's scheduled for Monday.

Todd came to relieve me so I got out of there so fast. I had to look like death on legs. I barely made it to the car before I puked on the ground (and on my bag). The drive home was longgggggg and sweaty. I picked up my dude Sully and set up a bed on the couch. Luckily, Sully is pretty good at entertaining himself so even though I couldn't sleep, I could rest (until I discovered Sully can CLIMB...on the art supply box to the toy box to the couch...I almost died when I saw him peeping at me!).

My dad brought over some pancakes and Sully and I had a Behind The Music marathon. My fever was 100.2 when I went to bed and it has clearly broken. I THINK I might make it to my oldest friend's wedding today!!! Last night I kept saying I'd have to see how I felt in the morning but I didn't have much hope. Right now, though I'm not upright, I feel 25-50% better and I think a shower will only improve that. I can't miss Tessa's wedding. She's my oldest friend and Spencer's godmother. It would be one of my biggest regrets. If we come home and don't get to stay in the hotel and I don't have cocktails, so what? I'll get to see Tessa in her wedding dress! And there's a photo booth!! I'm pushing through.

Happy Wedding Day Tessa. We love you!

I'll update again after Spencer's PICC surgery.

Tuesday, July 9, 2013

Gearing Up To Get Down: Time For Round 5?

Last Wednesday I took Spencer around the corner for a blood draw to find out when his chemo would start back up. Later in the day, his doc called to say that Friday was a no-go. While his platelets and hemoglobin were great and doing their thing on their own (which means the marrow is working), his ANC was 500 and as we know, chemo can't start until it's 1,000. You're all probably experts at this by now after all the babbling I've done. I wish we were all experts on something else.

Spencer was a week late last time so this was no shocker. The plan was now to bring him into the clinic for a blood draw and be prepared to admit him after. His doc felt confident that in a week his numbers would hit the mark. If they haven't, then we've just wasted some gas and a few hours. No big deal. I'm actually glad to be going downtown since his bandage is a WRECK and I'm ready to get all this chemo business over with.

If we start tomorrow, I only have to be at the hospital 2.5 days because I'm taking a mini-roadtrip for Tessa's wedding with the wife (unless chemo is delayed again and Todd can accompany me). 2.5 days is MUCH easier to take. And since I'm leaving the hospital on Friday, I won't really lose out on Sully time.  I'm talking about this like it's no big deal but I'm just fooling myself. 1 day, 1 week, 1 month...I hate being there. And I hate that I've missed out on time with Sully. He really gets the short end of the stick...but just keeps on smiling.

I have to pack. I've been putting it off.

Backing up to the wedding, I'm pretty excited. I bought 2 dresses because I really can't decide. That's always preferable to not being able to find one at all. Spending some time with the wife and getting to sleep in a hotel will be a nice break. Plus, I LOVE WEDDINGS. Even bad ones. I love getting dressed up, eating, open bar (and I'm not pregnant!!!), all the wedding traditions...and this is my oldest friend. It's going to be a great event in the midst of a junky time.

I'm still asking everyone to cross your digits that he can recover at home. A week in the hospital is long enough! I'll do whatever is best for him, of course, but I think what's best for him is being at home with his family. One more round after this. One more round then a lot of follow ups. Every week, every other, every month, every 6, every year, every few years. This will be with us forever. And I'll always worry that it's going to come back in one form or another. But I will not let cancer define who he is or who I am. It'll be an accessory of his life, not the core.

But enough babble. 

Next update from the hospital. Round 5/6.