Baby's first smartphone

I got our four-year-old his own smartphone. He can't read and he rarely can stay on a call for more than five minutes at a time, but I don't regret the decision at all. Last week, Ian asked for my phone so he could take a picture. He's been asking for my phone more and more, but for photos not games. This was the picture he took.

Not bad for his first photo. The best part is he understands how not to block the lens. He knows how to unlock my phone, navigate to Instagram, frame the shot he wants, and press the shutter button while keeping the phone steady. I just have to make sure he is aware of traffic in the parking lot while he's composing his masterpiece.

The next day, I asked Marilee if there were any old phones lying around the office I could buy or if I'd have to try eBay. Work didn't have any spares, but she had an old iPhone 4S she wasn't using for music anymore. She offered to bring it in the next day. Angela happened to have an old Otterbox case and we were in business!

I was going to leave the cellular plan disabled, figuring Ian could play games, take pictures, and use it wherever there was wifi. But even taking it with me to my lunch meeting, I got annoyed that I couldn't download a new app I thought of until I got back to the office. On the way home from work, I started to wonder how much it would cost at the Verizon store to activate the cellular.

30 minutes later, my four-year-old had a phone number and a data plan.

I felt a little guilty at first. Maybe he would have been okay with just the wifi aspects. But have you ever tried to explain to someone under the age of 6 the difference in wifi and cellular? Is it only in people's houses? All houses? All stores? Some schools? At hotels but probably not worth it because it's unusably slow?

I told the Verizon associate I was activating this phone for our son. She had several questions about how much data he would be using and I wasn't sure how to answer. Once we'd picked a plan and she was setting it up, she asked how old he was. I sheepishly told her that he was only four and she assured me that I was not a horrible mother for getting him a phone. Mind you, she does sell phones for a living so she's a little biased, but I did feel a bit better.

I had told Ian the night before that I would have a phone for him after work once I got it from Marilee. When I picked up Ian from Jenna's he had forgotten about the phone in all the excitement over playing in the pool. But when I showed him his phone and told him he could make calls whenever he wanted, he was delighted. I told him he could take photos all his own. He may have squealed.

That evening he told me, "Mommy, I need to make sure I have shorts with pockets so I can carry my phone around." We lounged in the bed that night watching Tinkerbell while I held his phone for him. After a bit, he said seriously, "Don't forget, Mommy, that's my phone." And when the movie was over, he yawned and rolled over for bed but then sat straight up and exclaimed, "I need to charge my phone while I'm sleeping!"

I showed him where all the 30-pin chargers are in the house so he knows how to recharge it (the line on the charging cable goes face up). I showed him how to get to the phone icon, choose the favorites star, and click on my picture to call me. I showed him how to tell if the phone was on wifi or not with the little icon. He's learning how to count to 100 and understand that 87 is larger than 32 versus just two big numbers, so he can decipher his battery life. He's worried that he can't message me since he can't type yet, but we're working on that. I expect a steep learning curve over the next few months.

He woke up the next morning and checked the phone's battery life first thing, but then was happy to leave it while he got dressed and ready for breakfast. We took it with us to Panera and did a practice call across the table to test it out. He was very pleased. I asked if he wanted to look for new shoes at Wal-mart and he was pretty excited. He took his phone with him in his shorts and I feared the elastic waistband may fail under the weight.

We headed to the shoe department and he found several he liked. All of a sudden, while sitting in the floor about to try on Lightning McQueen shoes, he blurted out, "Woah! I gotta take a picture of these!" He then dug out his phone, opened the camera app and took several pictures of the shoes before trying them on and deciding to get them. It was my turn to be delighted.

We looked for a few more essentials while there, and when we passed the dairy aisle, Ian had to stop and take a photo of the cottage cheese.

I don't know where he gets it from.

Soon it was time for him to go on his adventure with Sara and her boys while I drove back down to Winston-Salem for Rich's surgery. Ian kept telling me he was going to miss me, but I told him he could call me on his phone whenever he wanted and that seemed to please him. I hadn't been in the hospital an hour before Ian had called me. It was approximately a one minute phone call, but Ian called just to tell me, "Mommy! I'm calling you from my very own phone!"

My parents don't have smart phones. The last time I was in North Carolina with Rich while Ian was home with them, I learned it's very hard when all three people want to talk to me at once. So Ian is feeling very in control just knowing he has a phone that is his own personal connection to me whenever he wants. He didn't call me this morning before he went on his adventure with Stephanie. But he has several photos and videos waiting for him on his phone when he gets home.

Under other circumstances, I don't think I would have bought him a phone. But when both his parents are in another state for two weeks while his dad has major cancer surgery, it seems completely reasonable to me. I would have bought him a helicopter if I thought it would make any of this easier on us.

So far his weekend has been pretty great. And I was able to forward the videos on to his phone so he could watch them again whenever he wants.

The greatest of these

The last four weeks have snowballed. Rich was fine while I was in Phoenix. I came back from my trip with plans for our weekend in Richmond for Labor Day. Between then and now, everything has felt like a dream. I have been using every application and tool I have to try to make sense of what's happened since then. I made a specific Outlook calendar called "Slime" to track which hospital we've been in and what treatments we've tried. I use Day One on my phone and Mac to write notes as often as I can. I send emails and Facebook updates. I bought a giant dry erase calendar that lives in the hospital room with Rich to help track the day and who is there with him. And yet it's still all a blur. When we planned for Rich's first MOAS (mother of all surgeries, officially known as a cytoreduction with HIPEC), everything seemed very clear cut. I was very optimistic. We were going to go in, remove a bunch of slime, rest up, and then go home. That week didn't go as planned, but it was really just the beginning. Since then it's felt like we're in a great big holding pattern. Every three weeks, Rich goes to Nashville to get more "tiger repellant" pills and every nine weeks we get a CT scan that says "no tumor growth, no new fluid." It's felt like a familiar waltz for over a year. I started thinking about things that we would work on while we danced this waltz. Kids we would make or buy, trips we would take, big purchases we might make. 1-2-3, 1-2-3, 1-2-3.

And then WHAMO, Rich got a low fever, chills, and his belly swelled to twice its size overnight. It was a bit of a shock for both of us, and I didn't even have a pony keg strapped to my waist like Rich did all of a sudden. I've been trying to make sense of the numbers but it's all very confusing.

His white blood cell count went from 12 to 15 to 19 and has very very slowly been creeping its way back down since he got to Winston-Salem. We were told he could take up to 45mg of morphine every two hours but taking 30-45mg every four hours led to five paramedics in our guest room scaring the blazes out of poor Rich as the narcan jacked his system. When we finally got to Winston-Salem, Rich's blood tests said his prealbumin was crazy low (2mg/dL versus the normal 14-40). But after a week and a half of TPN it's only climbed to 5. And his C-reactive protein is over 200 versus the normal range of 1-10. That seems logical since it's basically testing inflammation, but none of this explains why.

The numbers don't really make sense. Why did Rich's tumor shrink after a year of not moving at all, but then somehow produce tons of ... something ... in his belly? What is in his belly? Peritoneal fluid? Mucus? Tumor? All of the above? What will happen on Monday when they try to remove it? Will they get it all out? Will they do the HIPEC part? Will they punt again? The short answer is nobody knows. So we just wait.

In desperation, I sent an email to the PMP support group asking for some encouragement or advice. The first response was:

Our faith in God is truly what carries us through this. My husband has days were he struggles but that is flesh, and the days that are wonderful are of God. Hang on, trust in the Lord, and don't go it alone. We always talk about the promise of NO tomorrow, and we live by that. It makes it easier to deal with death knocking on his door. Believing in the Lord is all we have, and the promise of a better place. I'm thinking of you today, and praying for peace.

That may be comforting to some but it just made me livid. Death knocking on her husband's door? The promise of a better place?

So I sent a profanity filled rant to some dear friends. They responded as they should, offering love and understanding and no mention of higher powers. But Travis did one better. He replied:

The positive thing I see in the message about God being their hope is that they have made it this far relying on a friend that doesn't respond. You two have the advantage that when you need people to listen or ask for help, you can be pretty damn sure you will get it.

I am humbled by the support we have received from everyone. Kevin just went home today after spending several days with Rich so that I could be with Ian and not fret. Rich is very tired and a little melancholy about all this, so he's not the best company, but it meant the world to us both that any time he woke in the middle of the night he could look over and know Kevin was there with him.

The nurses have had a heck of a time with Rich's PICC line because the TPN is so sticky. They couldn't get the caps off the other day until Kevin loaned them the Gerber multi-tool we gave him for officiating our wedding. As he texted me, "Full circle, baby. Full circle."

Travis left straight from work today so he could be with Rich overnight tonight. He'll be there with Rich until I get there on Saturday. Laura will be there with me for hardest day on Monday when Rich is in surgery all day (if all goes as planned) and will stay until Shannon takes over on Tuesday. Shannon has already proved her worth from our first surgery as she raced to Baltimore to be my brain for me when things went badly. She'll stay until Friday when Kim shows to be our own personal night nurse for the weekend (I'll make sure she puts her name on the dry erase board just like she's at work). And then Megan ... Megan who has been my brain for me these last four weeks will come to hopefully finish out our hospital stay and see us home.

So it is not just one or two of us struggling through this and praying to God. We are a fucking force of nature like no one has ever encountered. And if pure, fierce love were enough to cure something, then cancer doesn't stand a chance.

Ian wanted me to keep him company while he was in the tub tonight. I was doing my best to lounge on a closed toilet seat while he splashed and moved little foam letters around on the tile walls. He casually asked, "Mommy, what is love?" It took me a minute to answer. But he decided on his own that love was putting someone else's needs above your own. If so, then we are loved beyond measure, so much so that a power greater than the sum of those involved can be the only explanation.

Trying to catch up with cancer

I have not had the energy for blogging this week, but at the same time it's important that I write things down. I found myself going back through the blog to figure out how long Rich's recovery was from the first surgery. And while Facebook has served a purpose for immediate dispersal of information, it's not the same vibe. So let's sit for a bit and catch up, shall we?

When last we talked, we just had to survive a week until we could make it to Winston-Salem and have Rich "debulked." Surviving that week proved more difficult than anticipated. Rich was taking 45mg of morphine every four hours or so. We had no reference to know that was the medical version of a shit ton of morphine. The drug references we later consulted went up to 30mg every four hours despite his bottle saying he could take up to 45mg every two hours.

The hiccups were wearing Rich down. They were relentless. On Monday night (June 2), Rich went to bed in the guest bed. He wanted to spread out and be comfortable. I heard him coughing and hiccuping at midnight when I fell asleep. When I woke up at 4am with low blood sugar, I heard this odd gurgling sound. I got my juice box but then went to investigate and discovered I could not wake Rich up at all. I called my parents first to come down and then called 911. In the movies it always seems like paramedics are dispatched as soon as you state your address, but the operator asked me a million questions. I think she did all that while also dispatching help because our guest room was full of EMTs within minutes of my hanging up.

Narcan roused Rich, but we still headed to the hospital. We spent the next two days getting him stabilized as we figured out how to get him to his original Winston-Salem appointment. We discussed helicopters and ambulances but in the end Rich was stable enough to ride in our minivan. Over the week, though, Rich has gotten much worse. By the time we got to his 3pm appointment, Rich was curled up in the fetal position on the exam table, shivering and faint.

Rich was admitted that evening. It's been several days of just trying to get back to where we were two weeks before. We've gotten Rich rehydrated. We've gotten his pain under control. As of yesterday, we have total parenteral nutrition (TPN) being delivered through a central line. So we're hoping Rich will be better each day.

We found out today that we can't have surgery until Monday the 23rd. So we have almost two more weeks of waiting around. It's going to be a little rough. But it will allow Rich to be as healthy as possible before major surgery.

So what about that surgery, huh? How did we go from two attempts at paracentesis to drain fluid to a full repeat of our original cytoreductive surgery? Honestly, I'm not sure myself. It just kept escalating. According to the surgeon, there is a large tumor in Rich's upper abdomen, but there is also a lot of gelatin slime in his lower abdomen. We won't really know the specifics until they do the surgery, but we're okay with that since we've already learned that CT scans only show but so much.

A lot of this seems like deja vu all over again. But we're in a slightly better place than we were 18 months ago. We've had 13 months of drug trial treatment. We know more about the surgery itself and how it works. We are at a facility hand-picked by our trusted doctor in Nashville. We understand better the support network we need for the surgery and recovery period. There are still many unknowns, but life would be pretty boring if not.