The passing moment gone

There are moments that we don't ever want to let go of, and there are moments that we wish we could erase from our memory.  Our life as parents of this wonderful boy has been filled with a lot of both of those kind of moments.  

I remember holding him in the delivery room not wanting to allow the nurses to take him from my arms because I was afraid I'd never get him back.  I also remember hearing the doctors tell me that his little baby heart was enlarged, his lungs hazy and there was some sort of mass in his abdomen, I remember feeling terrified that he wouldn't make it through the night.  A couple of weeks later, I remember watching him sleeping in a car seat waiting for discharge. He was so tiny and fragile, but so content.  

A couple of years later after he had experience a terrifying febrile seizure that the doctors couldn't seem to control, I remember hearing one of the ER nurses whisper to the doctor "He's not breathing" right before they ushered us out of the room, shut the door and drew the curtains.  Later I remember sitting in the audience of his preschool graduation tearing up over how adorable he looked in an over-sized dress shirt he wore backwards (to simulate a gown) and little graduation cap.

On Sept 1, 2012 Jamie and I celebrated 10 years of marriage.  We have had a wonderful marriage.  I couldn't ask for a better wife, friend or partner. She has been and continues to be whatever I need, when I need it.  I could not do this with anyone else.  We've been through a lot  in 10 years of marriage so we decided to have a little celebration and renew our vows to each other and our family.  We had a little ceremony with the boys, our wonderful friends roasted a hog for us, and we had our favorite artist Jim Boggia come across the state to play a private concert just for our family and friends.  It was a magical evening that we wanted to never end, but no matter how hard we tried we couldn't hold onto it.

On Sept 21, 2012 we heard the words "bone cancer" and were forever changed.  No matter how much we want to erase that moment, it is with us every single minute of every single day. It defines our family. Everything we do is informed by those words spoken to Jamie by Dr. Decker "Mrs. Knox, Aidan has bone cancer."  We just cannot escape them.  Sometimes when I lay down to sleep at night they assault me with tremendous force.  I imagine him not making it. I imagine him critically ill and in hospice care.  I imagine trying to make it through a memorial service.  Thankfully those moments pass relatively quickly. Sometimes I have to get up and do something else (surf on the computer, turn on the TV) for a few minutes and then try again to go back to sleep. 

Even now though, we still have more good moments than bad and for that I am thankful.  I just wish we could find a way to hold onto the good moments and make them last.  Last Friday was that kind of night.

November 16th was the Zumbathon and Chinese Auction for Aidan, and even though I want to write about it, I'm a little hesitant.  I'm afraid that I don't have the words to adequately describe what an amazing night it was, how loved we felt, and how grateful we were to  not just be part of such an amazing event, but to be the reason for it.

The event took place at the 84 fitness center in the gymnasium.  Jamie and I have been members of the fitness center for a long time.  We've seen a lot of events hosted there over the years (blood drives, our kids birthday parties, other charity events, etc) and have never seen so many people inside that building.  The registration line seemed like it would never end, and then when it finally appeared to dwindle, another wave of participants would show up and the line would once again stretch out the door.

Inside the building there were over 90 amazing baskets up for Chinese auction which were put together by my co-worker Cindy.  She spent hours tirelessly working on the baskets and did an amazing job.  The baskets were on display and open for bidding among 84 employees the week leading up to the Zumbathon.  When the baskets finally made it to the fitness center and the auction opened to those buying tickets for the event,  many of the "bid bags" were already nearly overflowing with tickets. There was good reason for that.  I'm not a Chinese auction connoisseur, but I've seen a few at the races and events I've attended over the years. This Chinese auction was like nothing I had ever seen. Every single basket was something awesome.  There were signed Steelers pictures, signed penguins pucks, a gift card tree, really cool beer and snack baskets, a night out at the symphony complete with dinner for two at Braddocks brassiere, passes to the Zoo attached to the biggest teddy bear anyone has ever seen. (I'm not exaggerating  that bear was almost 5 feet tall.)  Those are just the baskets that immediately come to mind.  The auction was packed with fantastic items including two "silent auction" signed Penguin Jerseys (Mario Lemieux, and another signed by current players including Sidney Crosby.)  The Auction was the talk of the office all week leading up to the event and all Friday night people were marveling at all the baskets.  

The zumbathon part of the event was organized by our good friend Kate.  If I had to describe Kate in one word it would be "inevitable."  That may not seem like it makes sense, but to me it seems like the perfect word.  When you hear that Kate is attempting a new project or venture, you don't question whether it will be a success, because it is inevitable that it will be. I don't know that we have ever known a more tenacious, determined goal oriented person.  Since we've known her we have watched her organize successful charity events, her class reunion, and build her zumba class from teaching at a few places during the week to a successful local fitness studio with a full class schedule.  when Jamie and I received a message from Kate a few days after our diagnosis telling us that she was going to organize the biggest and most successful zumbathon our area has ever seen, we didn't doubt it for a second.  Last Friday night Kate delivered on that promise.

We don't have an accurate count of how many people attended, but I know that the entire gymnasium was full of people dancing, laughing and having a great time.  Kate had an entire lineup of fantastic instructors who volunteered their time for the cause.  I don't know a a lot about Zumba, but everyone we talked to said the instructors were top notch and it wa simply the best and most fun zumbathon they had been to. Music and photobooth fun was provided by our friends Jason and Janice of Hinkledire entertainment.  Tickets, T-shirt and wristband sales were handled by Melissa, Maria, and Luanne.  Everyone involved did a fantastic job making sure everything went smoothly throughout the night.

During the event Jamie and I floated all around the gym.  We spent most of the event being embraced by friends, family and even strangers who had heard of Aidan's story.  The sheer number of people in attendance was overwhelming, but what was even more incredible was that we knew most of the people in attendance personally. And we know that they would have been in attendance no matter what the event was (as I'm sure we'll find out this Sunday at the spaghetti dinner)  I saw and hugged people I haven't seen in many years.  We had friends drive over 4 hours to be there in support of our family.  From the very moment we heard those dreaded words the outpouring of love and support our family has received has been remarkable.  Friday night was just another example of that.

Near the end of the evening Jamie and I took the microphone to thank everyone and say a few words.  I hope that we did a good job.  It's extremely difficult to put the gratitude that we feel on paper and near impossible to do it in an impromptu speech. There aren't enough synonyms for "thankful" to adequately express just how much it meant to us to see so many wonderful people come together for Aidan and our family.

Even though we wanted to hold onto that night forever things were coming to a close and our youngest son Dylan took the microphone to let everyone know it was just about time to pack it up as he proudly exclaimed "I want to go home!"  With that, Kate took the stage again to lead the cool down to "Live The Proof"  I took this video on my phone so that I could hold onto that moment and also to show Jim just what and amazing impact his song was having on not just us personally, but all those people who were with us along this journey.

With the cool down finished, Cindy called the winners of the auction baskets.  More hugs and thanks were given.  Equipment and tables were torn down and packed up.  The night was over.  The moment had passed.  But we will never forget all the hard work done by so many to make the zumbathon and auction a success.  Nor we will forget how loved we felt by all those who attended to support our family. It was truly a magical night.

    

The Roller Coaster

It's been a while since I last updated the blog.  It's not been for lack of effort.  At least three times I have started drafts of entries, putting a few hundred words down only to have circumstances completely change before the entries could be proofread let alone published.  We've been on an emotional roller coaster of epic proportions recently.

On the medical front everything has been going pretty much as expected. Aidan has been doing well and tolerating the chemotherapy with limited side effects.  His counts have fallen and risen and fallen again, but he's generally felt decent throughout the process. 

Monday night Aidan's hemoglobin levels had fallen well into the critical range and we had to get ourselves to the Clinic bright and early Tuesday morning for a blood transfusion.  We were sufficiently scared having never gone through that before, but it couldn't have gone smoother.  We were there quite a while as two bags of packed red blood cells dripped into his picc line, but  The effects were almost immediate.  Within an hour or so color had returned to his cheeks and by the time both units of blood had infused he felt fantastic and looked healthier than he had in weeks.

We were worried that this unexpected transfusion would delay our scheduled inpatient stay for 5 straight days of chemotherapy, but his ANC and platelet levels were both very good so there was no need to go off schedule.

Aidan came back to the hospital Wednesday into the same day surgery department and had his picc line removed, mediport installed, and his first of five doses of Chemotherapy. He's pretty sore today and having trouble moving around, getting in and out of bed etc. but otherwise is none the worse for wear.  He's actually been declining pain medications so it's either not all that bad or he's starting to toughen up a bit. Inside our little cancer bubble we are doing pretty good.  

It's everything outside his diagnosis and treatment that we are struggling to manage. Dealing with Aidan's diagnosis and treatment is pretty much a full time job. Even discounting all the logistics and case management that Jamie has to do to keep his appointments, medications, schooling, nurse visits,  we have to monitor him closely to stay on top of possible side effects of his treatment to make sure his symptoms aren't indicative of something worse than just "to be expected" side effects.  We have to work at keeping his spirits up as best we can.  When our world outside of Aidan's diagnosis chugs along quietly as if on auto pilot, we can more or less manage it all effectively.  This hasn't been the case the last several weeks.

I have been busier at work than I have been in a really long time and I can't seem to get myself ahead.  Just when it appears that I am getting a firm grasp on everything, 3 more projects land in my lap and I'm immediately behind again.  I now have server upgrade projects that are going to require travel and I honestly have no idea how I'm going to pull that off with Aidan's schedule of hospital stays and the prospect of leaving Jamie by herself for a few days at a time.  I am definitely thankful to not only have a job, but work for a company that has been so accommodating with me in the face of this diagnosis and supportive of Aidan and his journey, but it doesn't change the fact that I've felt like I'm just barely able to tread water at work the last few weeks.

Jamie also is doing her best to stay ahead of her work as well, but the schedule of treatments and hospitalizations as well as being home with two boys (one who has cancer and another who you can tell feels a bit slighted with his brother receiving so much attention) and just trying to keep our household running make it difficult to find time to sit down and work on photos.  I honestly don't know how she does it at all, but she is still somehow managing to turn out beautiful work albeit a bit slower than she normally does.  Thankfully her clients have been understanding of our situation, but I know it still bothers Jamie that she is not able to get things done for them as quickly as she is used to and expected to.

Lots of other seemingly small things have gone wrong or at the very least were more complicated to deal with than they should have been.  Normally when that happens it's just a minor irritant, something that just slightly derails an otherwise fine day.  We are already constantly on edge though so when the car breaks down and requires minor service, for example, it seems completely impossible to deal with.

Then our family hit a breaking point.  We thought for a couple of days that we might lose Champ.  He fell ill and was vomiting all over the house.  Our vet (who won't be our vet much longer) recommended we withhold all food and water for 18 hours but gave him an otherwise clean bill of health upon exam. We followed Drs orders but as soon as he was eating again almost a full day later he was still throwing up. When he tried to rest on the couch his entire body shivered as if he were out in the cold without the sweaters Jamie sometimes makes him wear.

Jamie took him to the emergency vet who did an X-ray and suspected he had some sort of obstruction in his GI tract.  The options given were to be transferred to a different vet hospital that had more advanced equipment (ultrasound capabilities) do exploratory surgery on the spot, or euthanize him.

We've only had Champ for around 11 months but he truly is the glue holding our family together right now.  Knowingly or unknowingly, he gives each and every one of us exactly what we need to help us get through this.  He offers himself as a jungle gym for Dylan allowing himself to be stood on and tackled by our rambunctious 4 year old.  For Aidan he is the ultimate therapy dog, laying at the foot of his bed at night or on the couch with his head in Aidan's lap.  He's my running partner and even though I go slower with him than when I run solo, I enjoy my runs with champ much more than the ones he misses.  At night and in the mornings he is the snuggling bear that Jamie needs.  He is perfectly content to have her arms wrapped tightly around him for as long as she wants to snuggle him.  He is the absolute perfect dog for us and is part of the family. To be faced with the thought of losing him when he is still so young and vital was too much to bear.  I mean I'm certainly not Ernest Hemingway, but even I can spot that metaphor.

We opted to send him to Pittsburgh Vetinary Speciality and Emergency Center where they had an ultrasound machine and could get a better look at was what going on inside him.  We decided that there are things far more important in this life than money. We were going to do what it took to keep our family whole. They admitted him and immediately started getting him hydrated via an IV drip.  They kept him overnight and did an ultrasound the following morning and things looked better than they expected.  A repeat of the X-ray showed a big improvement and it looked like whatever was causing him such great distress had finally started moving.

A couple of days later, after a sizable vet bill, and a large chunk of raw carrot was removed from him during a procedure to get a stool sample, Champ was back home where he belonged.  He was seemingly a bit miffed that he was on a bland diet which included an insanely expensive small bag of dog food that apparently tasted awful.  He was also not terribly thrilled that we had voided his tickets for the table scrap train that he takes daily commutes on.  Joking aside, he was as happy to be home as we were to have him home, and as odd and silly as this may sound, getting through this medical ordeal with Champ made us more optimistic about the cancer battle our family is fighting.

We received a book when we were diagnosed called "Living With Cancer"  I didn't think much of it at the time, but almost two months into our battle, I'm struck by just how appropriate that simple title is.  This diagnosis is omnipresent and affects every single aspect of our lives.  Our Drs told us when we received our diagnosis that we'd get used to a "new normal." We definitely have a better understanding of what they meant, but we're not used to it yet. Perhaps as we get further along in our journey all this stuff will become easier, but right now we're just trying to keep our hands, arms, and legs inside the car.