House Arrest, S.A.D., Songs, and Spaghetti Dinners

To say it's been an eventful couple of weeks since the last blog update would be a understatement of epic proportions.  Once again the seed of an idea would come to me and I'd start to think about it in terms of a blog post. Just when it was starting to come together and I was feeling ready to sit down and bang on some keys the road we're traveling would take an hard unmarked turn and all the little boxes of our life that we were just starting to get organized and stacked neatly would fly across the car and break open - their contents spilling all over the upholstered seats (why didn't we just pay for the leather?)  We've spent so much time picking up the pieces that it's hard to reflect on any specific event in enough detail to properly write about it.  Things are just happening so fast.

I've not wanted this blog to just be a recap of what is going on in our lives, full of medical terms and details.  I feel like most everyone gets that on Facebook from either Jamie or I and while it's fine in that form, I think it would become tiresome here.  I've always tried to find some theme in what is happening in our lives as we deal with cancer and weave our experiences around that theme so that it remains interesting and thoughtful.  Even though I'm mainly writing this for myself, I am aware that, though the audience is small, I'm not the only one reading these entries. I try to make it as enjoyable / insightful as I can for everyone who takes the time to read the blog.

I've also purposely avoided shorter posts. I'm not sure why exactly, but I have never felt like I should be able to get away with just publishing a paragraph. I realize it's completely ridiculous.  Hemingway is one of my favorite writers because of how brief and concise he was. He could write paragraphs that would seem unremarkable. The words would be simple. The sentences wouldn't contain a lot of adjectives and adverbs or flowery language, yet his short stories, in particular (and some of them are incredibly short), remain some of the most powerful writing I've ever read. I have tried to adopt the Hemingway principle in my own writing and write using only the words necessary. I'm not sure why I haven't extended those guidelines to the length of entries. I'm realizing that I need to get over this hangup about publishing only a paragraph or two; our life is too chaotic right now. So in the future I may be updating more frequently though the entries may be more brief.

I'm going to try and embrace the idea here in this single blog entry and spend the rest of the time briefly covering the events of the last couple of weeks and some of the ideas I've had surrounding them. They all probably deserve a more thorough treatment, but I'm learning that when you are living with cancer, you just have to do the best that you can, be okay with that, and forgive yourself the rest.

In the last entry I spoke glowingly about Jamie and I plan to do a little more of that in this entry.  She's an amazing wife and a fantastic mother and I couldn't love her anymore than I do, but there's more than just love to our relationship. I genuinely LIKE my wife.  She is my best friend and that is by no means obligatory. She truly is my favorite person and I love spending time with her -  going out with her and doing fun things and now it seems like we just can't.

When we got our diagnosis, we knew that our lives were going to change dramatically. We knew and accepted we were giving up the weekend getaways and road trips. We accepted that we were probably going to have to give up our weekly kid free Saturday nights and Sundays. We didn't expect that we'd have to package up our entire social life into a canister and bury it in the backyard next to a little marker that says "do not open until Aug 2013." 

We've tried on three occasions to do something fun together and all three times have ended with us at Children's hospital ER. The latest incident occurred the day after the Zumbathon. Aidan was feeling great and looking pretty good and really wanting to spend some time at grandma's house. So we planned a Dylan day (lunch out and a viewing of "Wreck It Ralph") followed by an evening out participating in the yearly scavenger hunt we've done with friends the last couple of years. Dylan's day was fun and when we dropped him off at Grandma's house Aidan was feeling fine. We met up with our friends and got ready to try and spend an evening doing something other than thinking and talking about cancer. We didn't even get to the starting line. We got a call that Aidan was fevered. Jamie placed a call to the oncology hotline. He had to go back to the hospital.

It was supposed to be a simple trip. Get his port accessed, draw blood and get his counts.  Get a dose of antibiotic. An ANC of 500 or better meant discharge.  Under 500 meant hospital admission. We went into the ER around 7 PM, but somehow it took until 4 AM to get admitted to the hospital.

The two other times we tried to do something fun landed Aidan in the hospital too. Maybe we are unknowingly and coincidentally picking bad times to try to spend time together, but it really is starting to feel like we're cursed. It feels like we're causing his hospitalizations by trying to get away from his diagnosis for even just a couple of hours. We haven't had a conversation since late September that wasn't about cancer, and as depressing as that is, we've learned to accept it. Is it too much to ask to be able to do something fun once a month? It sure seems that way. I miss my friend.

A few weeks ago we turned the clocks to end daylight savings time. We've lost more and more daylight steadily since then. Even though it's been fairly mild weather wise, this is the dead of winter for me. It's dark in the morning when I leave for work and dark at night when I head home. Every year I struggle with Seasonal Affective Disorder.  I get cranky, tired, angry, and generally just feel apathetic. Jamie got me an artificial sunlight machine a few years ago, but most times I feel too apathetic to turn it on. 

I didn't give S.A.D. a whole lot of thought this year, and if you asked me if I thought it would affect me, I probably would have said "Aidan has cancer, how much worse could shorter days and lack of sunlight really make me feel?" As it turns out the answer is "quite a bit."  

Aidan's diagnosis has already given me most of the symptoms I usually experience from S.A.D. but lately they just feel like they have been amplified and much harder to shake.  A month or so ago I might feel really sad for a couple of hours, now the sadness stretches to a day or more. I feel more angry now than I did before. My apathy has increased as well and I find myself struggling to be productive and take care of things that need my attention because I truly couldn't give a damn about them.  

I am even finding it hard to make myself take my daily runs lately despite how much better I feel after I run. For much of this year the only thing that occasionally felt tedious about the running streak was just finding the time in the day around our busy lives. Excepting the day we received our diagnosis and the day after, The actual act of running has always been a pleasure. There are just 31 days left in the year. I've run on every single one of the previous 335 and already surpassed my initial goal of 1000 miles. I should be excited to be in the home stretch of my running resolution. Instead it's become a real struggle lately. During the week, work and my general apathy keep me at my desk when I should be outside running and then in the evening when I force myself to keep the streak alive and run, it's either a depressing run the dark and cold, or an equally loathsome run on the treadmill.

S.A.D. really hit me the hardest last Sunday. That was the day our community threw our family the biggest and most impressive Spaghetti Dinner fundraiser our town has ever seen.  The event was held at our local VFD social hall. I'm not sure what the occupancy limit there is, but the place was packed from 11am - 4pm. It seemed as if the entire community came out to support Aidan. Volunteers cooked, and served. Local businesses donated baskets to the Chinese Auction, and volunteered their services. The food was amazing and the event was a huge success. Jamie and I received much support and many hugs from friends and strangers alike. We owe thanks to all those who volunteered, and all those who bought tickets and came to the event.  

When the event had ended I should have been feeling positive and basking in the glow of the amazing outpouring of support we received, but I wasn't. The thing about S.A.D. with me is that it makes me focus on the negative things that happen and the feelings that arise from those events even when the positives far outweigh them. So despite all the love and support that was showered on our family, I found myself unable to shake the feeling of sadness and sense of impending doom that arose from meeting an extremely nice gentleman who came to the dinner to offer his support. His son had just recently passed away from Ewing's and even though I know he was trying to be helpful we could still hear pain, grief and bitterness in his voice as he told us about his son.

We know that everyone's journey with cancer is different. Even people with the same diagnosis have entirely different cases. This man's son contracted Ewing's in the worst possible spot (the pelvis) at the worst possible time (as an adult) and Aidan's case is nothing like his but despite all that I found myself feeling sick to my stomach and incredibly sad. People tell me how strong I am, but the truth is that I have to work really hard to stay positive and push away the dark and painful thoughts that try to consume me. Meeting that man was just another reminder that it's possible that our family might not make it through this battle in one piece. All those dark thoughts came rushing back.

I also started feeling hurt and disappointed that despite the incredible turnout for the event many of our closest friends were unable to make it. When I expressed these feelings to Jamie she not only validated me, but confided that she was feeling the same way. As I mentioned earlier, Aidan's diagnosis has  put us out on an island - isolated and unable to get out to see our friends or have any fun. We had hoped that between the Spaghetti dinner the Zumbathon we would get to see them all for a least a minute or two but it didn't work out and we feel like we are slowly drifting away. We're afraid that when when we're done with this journey everyone will have moved on from us and we'll be alone. 

It took me two days to get out of the funk I was in. I've gotten outside to run during the day the last few days and getting some sunlight on my face has made a huge difference in my outlook. I'm going to have to force myself to get out there and run and start using my S.A.D. light or it's going to be a really long winter.

I'll end with some happy news. Two weeks ago, we started a project called Songs For Aidan. The idea was to try and get musicians and singer / songwriters to record a youtube video of them playing a song just for Aidan and hopefully include a personal get well message to him. I created a youtube channel (www.youtube.com/user/SongsForAidan) and a little web page explaining the project (http://live-the-proof.com/songs-for-aidan.html) and we started reaching out to our favorite indie artists in hopes that they would not only contribute but spread the word among their circle of friends.  

The response so far has been nothing short of inspiring. I'm getting at least one email every day about participating.  We've gotten a ton of great commitments and already have one video from singer songwriter Jane Fallon which is absolutely perfect

please help us spread the word about this project. We really want to fill that channel up with songs for Aidan so that when he is feeling down he can pull up the youtube channel on the computer, feel really special and hopefully find a reason or two to smile.

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.

The meltdown

I guess I could be an advertisement for Hogfather's Barbecue restaurant.  "Food so good it'll make you cry!"  

On Friday, Jamie brought me lunch at work.  We sat in her car in the parking lot and had pulled pork sandwiches and macaroni and cheese, and I had a complete meltdown.  It was the kind where you are crying so hard you can't even catch your breath.The lack of oxyegen makes you lightheaded which in turn makes you panic a little which just fuels the meltdown even more. So I sat in the car with take out boxes scattered around me sobbing uncontrollably in Jamie's arms unsure if I could break the cycle or even if I wanted to. I hadn't had a moment like that since early on in this process.  I could see this one coming though.

On Wednesday while I was working from home so Jamie could go to a Dr's appointment a server at one of my remote sites completely crashed. Luckily it was a local site at Coal Center, Pa so I didn't have to hop on a plane or drive to another state.  I left the house after Jamie came home to go there and do what I could.  I found one of the worst scenario's possible when I arrived.  I'll spare the technical details, only a handful of people reading this would understand any of it.  For most people it would sound like I was speaking some weird foreign language, which honestly isn't far from the truth. Suffice to say, it was a bad situation and there were a lot of people there relying on ME to fix it.

I immersed myself in the situation and formulated a plan to get things back on track. As I began to implement my plan I started finding that nothing, and I mean nothing was going according to plan.  Even the simplest tasks were turning into major ordeals and taking 10 times longer than they should.  I was trying to take one step forward and was getting knocked back six.  I worked late Wednesday.  I got up at 4 AM on Thursday and worked the entire day on it.  By the time Friday morning rolled around, everything hinged on me recovering a bunch of crucial files from the backup that was run on Tuesday before everything exploded.  I had already recovered some files off that tape Wednesday night, so I didn't expect this would be much of an issue at all.  I would just go into the office early on Friday and start the restore and I would be able to deliver those crucial files to the site before lunch.

I'll again spare the technical details, but nothing was working.  I was hitting roadblocks at every single turn.  I went into work at 6 AM.  It was pushing 2 o'clock and I had accomplished nothing. 

I was already extremely frustrated, stressed and worried when Jamie called me to tell me that she had received the results of Aidan's blood work.  The Nurse usually calls with those results.  On Friday one of Aidan's primary oncologists called.  

There are a couple of key measurements they look at.  One is called ANC (absolute neutrophil count) which is essentially a measure of is immune system.  In order for Aidan to be able to undergo any chemotherapy treatments his ANC needs to be 750.  On Friday his ANC was 50.  The other number of concern was his hemoglobin level.  When he left the hospital on Monday, his hemoglobin measurement was 9.1.  The "normal level" for kids is 11-14. When it drops into the 8's is when you start to see symptoms of anemia like listlessness, pale complexion, light headiness etc.  When those symptoms appear it means that a blood transfusion is in order.  On Friday Aidan's hemoglobin level was 7.7.

Those numbers themselves were scary, but even scarier was that it was very possible that they would fall even more.  Those numbers typically bottom out seven to ten days after the completion of a chemotherapy treatment. When his blood was drawn on Thursday night, it was not even day five.  It's important to note that though his levels were concerning even for his doctors, they did stress that seeing such a dramatic drop after five straight days of chemotherapy is not only normal but expected.  Having never been through this type of thing before that wasn't much of a comfort to us.

The possibility of an unexpected hospitalization and blood transfusion loomed over us like one of those cumulonimbus clouds Aidan is learning about with his homebound instructor.  The weekend was going to be scary and we were going to have to on high alert and monitor him extremely closely. That news on top of the work crisis was too much for me.

I know we were talking about Aidan and his cancer (which is a topic in nearly every single conversation we have these days,) but I don't even remember specifically what prompted my epic meltdown.  I do remember in the middle of it Jamie telling me just to let it all out, that I'd feel better afterwards. It did help a little but I still felt like I was out on a ledge just one misstep from plunging into a dark abyss.  It wasn't until after I went for my run and ran substantially faster than I normally do that I felt more normal.

It's Sunday night now and I'm happy to report that the work crisis has been mostly dealt with and Aidan has made it through the weekend thus far with no issues whatsoever.  (I just knocked on the wooden computer desk)

Hopefully we make it through tonight with no issues and when his blood is drawn tomorrow we'll see that his blood counts are recovering and we don't have to delay his chemotherapy on Wednesday.  I also hope that it'll be a little while before I have another meltdown like the one I had Friday.

Perspective

I get on the elevator on the first floor with a bunch of other people.  There are doctors, nurses, other parents, visitors etc.  The elevator stops at random floors as we ascend and one by one they exit.  By the time I arrive at my destination, they are all gone. The bell dings. The computer voice says "floor 9." The doors glide open. I step out onto the hematology / oncology floor alone and a little piece of my heart breaks.

Before we got this diagnosis, I said that every time we ended up at Childrens hopsital that along with the great care we received we also got a healthy dose of perspective. We would see kids and families in far worse situations and we would feel grateful for all that we had.

I'll be completely honest and tell you that when your kid has cancer it's a lot harder to find that perspective.  Aidan is now one of the patients that we felt sorry for on our previous visits.  He's the little bald kid pushing around a big IV pole in the cafeteria. He's now the patient who helps the parents of the kid who is in for an appendectomy realize just how fortunate they really are.

It's not entirely impossible for us to gain perspective though and on the good days I feel like we still have it in spades.

We met a family here whose 9 moth old, Nolan, awaits a heart transplant. Yesterday he underwent open heart surgery to have an artificial heart installed while the transplant team continues to look for an acceptable donor heart. There are kids on our floor who are younger than Aidan and have already endured several surgeries to resect their tumors.  Many patients on this floor have to have bone marrow transplants. One of the patients on our floor is a small baby who can't be more than a year old. I met a mom in the unit pantry whose daughter had relapsed after being in remission for over a year.  Today in the elevator Jamie met an Amish lady who tearfully told her that her grandson has just passed away.

Yes, Aidan has cancer and no, there are no guarantees, but it is treatable. His particular disease has a pretty good cure rate and we found the cancer before it had metastasized.  We've been through one full round of chemotherapy and he's tolerating it really well aside from a few minor side effects.  When we've been in the hospital the biggest issue we have had to deal with is Aidan getting homesick and sad.

I still never would want anyone to have to go through what we currently are, but things could definitely be worse.  On the good days we see this clearly and our hearts go out to those families whose burden is more than we could possibly imagine.  On the bad days, it's hard to find that perspective.  It's hard to do much of anything except cry, but RIGHT NOW I know that in spite of everything we are still very fortunate to have these wonderful boys, an amazing support network of family and friends, and an amazing team of medical professionals working hard to get Aidan better.

Spook-tober

If you took a poll of our friends and asked them what their favorite holiday was, Halloween would win by a landslide.  Our friends throw annual costume parties and spend most of the year planning their costumes.  We have friends that actually work at a haunted house and most of our friends can't wait to head to rich's fright farm or phantom fright nights at Kennywood park.  They all love their horror movies as well. New Releases, classics and awful 70s camp films are all consumed with the same enthusiasm. When the weather turns cooler and the leaves start to turn our friends are excited and ready to be scared.

Personally I'm relatively indifferent about the whole thing.  Aside from the one year that I trick or treated in a homemade Chewbacca costume, (someday I will tell that story at a Moth story slam night) I've always had positive Halloween experiences.  I don't mind horror films when they are well done and generally gore doesn't really bother me.  I could take or leave the haunted house experience, but I had a really fun fall semester in college when I worked as part of the haunted cave tour at Laurel Caverns.

Jamie on the other hand is far from indifferent on this matter.  And I think it's pretty easy to tell what side of the fence she is on by disclosing that aside from the occasional psychological thriller, we haven't watched even one honest to goodness horror movie in all the years we've been together.  She also has this theory about haunted houses which would probably make a fantastic horror screenplay.  The theory suggests that there wouldn't be any better place for a crazed serial killer to blend in and harvest victims than among a bunch of people working at a haunted house pretending to be crazed serial killers.

When October comes and our friends start trying to decide which haunted houses they will visit and planning to view the entire saw series in one night with the lights off we celebrate in a much more genial way.  We dress the kids up to collect candy from our fine neighbors and we don some sort of clever couples costume and attend a few annual parties thrown by our friends.  We intentionally keep the scary and frightening away from our family.

This year we can't keep the scary and frightening away.  The call is coming from inside the house and it's cancer on the line.

Everything is terrifying now in one way or another.  The mold on our old dishwasher and on the calking on the tub is a health concern that we have to deal with. Watching Dylan drink from everyone else's water glasses despite having his own is unnerving. Seeing Aidan touch all manner of things around the house (pencils, keyboard, mouse, toys etc) and then stick those same fingers in his mouth is beyond chilling and I think it's seriously going to give us some sort of fright induced cardiac episode.  We don't need to visit any haunted houses this Halloween season. We are living in one.  I'd say come over and be scared too but NO VISITORS ALLOWED!

Aidan is no longer a "normal kid" he's a cancer patient on chemotherapy and now EVERYTHING is a big deal and it's all scary.  Aches and pain and benign symptoms that most parents would take a wait and see approach with have to be reported to his oncology Drs. and given due process.  Fevers, headaches, nausea, muscle aches and lethargy are pretty common for kids to experience.  Most kids take the day off of school eat chicken soup and watch Nickelodeon all day.  If Aidan experiences any of these symptoms alone or in combination there's a better than average chance we are getting admitted to the hospital.

This past Sunday, after Jamie and I returned from the Steeler game, we spent the rest of the night at the Children's hospital ER with Aidan and we were terrified the whole time.  Aidan was complaining of back pain and we had no idea what to do.  He didn't appear to be in a lot of pain, but back pain was what started this whole process that lead us to finding out he has cancer.  The questions and fears were impossible to keep at bay. Has it spread?  Does he has some weird infection now? Did we miss a tumor the first time?  I spent most of the night feeling like I was going to either throw up or crap my pants (occasionally it felt like there was a distinct possibility both were going to happen at the exact same time) The story has a happy ending though.  The Drs attributed his pain to his blood cells regenerating and causing discomfort similar to "growing pains." The pain was localized right to the spot where he had his bone marrow biopsy so this explanation made a lot of sense to my non medical but relatively logical mind.  He has felt great for the past couple of days with no need for any pain medication.

By far the scariest part of all of this is the feeling of helplessness and uncertainty. It's heart wrenching, and indescribable.  Parents who are going or have gone what we are going through who would understand.  You can't put it into words though.  There are no adjectives or adverbs that can adequately describe how torturous it is to watch your child suffer and know there is nothing you can do to do to make it hurt less. If I could take it all from him and do it for him I would.  I would do the chemotherapy radiation and surgery.  I would let them put a hundred IVs in me.  I'd suffer all the side effects. I know that 38 years isn't a long time to walk this earth, but if I could trade just another year of life for the promise of both of my boys growing up happy and healthy men, I would do it without hesitation and without fear.

Faith

Since we received our diagnosis on Sept 21st 2012, we have been showered with kind words from family, friends, and even strangers.  The most common sentiment we have heard is "our thoughts and prayers are with you and your family"  Many folks have even put Aidan on the prayer lists at their respective places of worship and we have received a couple of lovely gifts from various church groups that our friends belong to.  Others have simply said they are thinking of us, or sending positive healing energy our way.  

Jamie and I appreciate those sentiments and what we take away from both is that our family is loved and that folks are pulling for us to get through this tremendous battle that we have just started.  The fact that people are taking the time every day to reflect on our situation and wish us well helps us feel less alone and gives us just a bit more strength to push onward.  So please keep thinking about us and wishing us well in any way that is a comfort to you.

I mentioned in a Facebook status when this all began that we are a spiritual family and not necessarily a religious one.  As we continue to move forward in this journey, I think now may be a good time to clarify and expound on that statement.

We believe that we are all connected to each other and all things. Through those connections we are also connected to  a greater universal energy that is omnipresent.  I have felt these connections and been filled with this energy. I've felt it standing on the shore of a vast ocean as the tides laps cool water over my toes.  I've felt it sitting in front of a warm fire on a quiet and clear night when there are too many stars to even count.  I've felt it on runs with the dog, when we sync our strides, the world melts away, and movement seems effortless. I've felt it in art and music. Mostly though I feel it in our family.  I feel it when I hug the boys tight and kiss them on the forehead.  I feel it when Jamie and I embrace and kiss. 

We believe this energy is pure and infinite and that it is the alpha and omega of all things. We don't believe that this energy rewards or punishes. We don't believe it creates destinies or changes the course of people's lives. It simply just exists as part of us, connecting us to all things. Believe it or not, this has been a great comfort to us during this ordeal. 

Life, on a molecular and cellular level, is a complicated  and extremely fragile process. The margins for error are ridiculously minuscule and because of this sometimes even beautiful and innocent children get very sick and even sometimes die. We don't have to ask "Why us?" We don't try to discern what we are meant to learn from this struggle or how having such a wonderful child get cancer could be part of any master plan.  We just accept that IT IS and we focus our energies on dealing with it the best we can.  

We place our faith in Aidan's doctors, nurses, and all the wonderful staff at Children's Hospital of Pittsburgh. We place our faith in the cancer researchers all across the world tirelessly working to develop new treatments for this awful disease while they work towards the goal of finding a cure.  We put our faith in the love of friends and family to see us through this battle as it has done so many times before. In moments of joy we embrace and celebrate our connections and bask in the energy.  In times of struggle we try to reflect and be still to feel those connections and be filled with that spirit once again.

As I said before, we welcome prayers, thoughts, healing vibes and incantations of all forms. The very fact that people are taking time to introspectively reflect on our family and our situation means a great deal to us.  We love and are connected to each and every one of you. 

Getting back to normal?

After a rough couple of post chemotherapy days, Aidan bounced back on Sunday and since then has been the same 9 year old that we all love.  If he had a long sleeve shirt on that covered his picc line you'd probably never even guess he was sick at all.

That wasn't the case last Friday or Saturday.  The chemotherapy kicked his butt pretty good.  His throat was sore and it hurt to swallow even water. He had little appetite and even when he was hungry, eating was a bit of an adventure because one of his medicines was making his jaw and teeth hurt pretty badly. Giving him Tylenol helped a little bit, but he was still generally pretty miserable and run down.  He handled it like a trooper though and we did anything and everything to make him as comfortable as we could.

On Sunday afternoon he found himself again and had a fun day at Grandma's house playing board games and watching TV. He felt so good he even spent the night. His brother joined him in the afternoon on Monday giving Jamie a much needed break.

When I picked the boys up Monday evening, things truly had returned to normal, they fought like cats and dogs pretty much the entire way home.  When I asked Aidan as nicely as I could to "Please stop instigating and tormenting your little brother" his response was "But it's fun!"  Yep, back to normal.  Except, not quite, really.

Two weeks ago I wouldn't have been able to listen to more than  minute of the back seat arguing before raising my voice.  Monday it was comforting to hear the 4 year old whining and demanding Aidan stop saying whatever annoying thing he kept repeating. (Just because I took some comfort in it doesn't mean I didn't try my best to completely ignore it.)  They almost made it halfway home (about 15 minutes) before I demanded they knock it off and be nicer to each other.

Aidan even felt well enough to get out of the house and go to a movie yesterday.  His blood counts were exceptional so it wasn't a huge risk to have him out especially for a matinee when most kids are in school.  Even though Jamie and I would prefer to  never let him leave the house for the next 9 months, it's important to allow him to do stuff like this when he's able..

For what it's worth, I seem to be finding my way back to normal as well. These last few weeks have been really hard.I know that I'll be forever changed by them and the journey we have ahead of us, but there have been a couple of moments when things are quiet, (like trying to go to sleep or waking up in the middle of the night) where I wondered, for example, if I'd ever get my sense of humor back. I wondered if I'd ever be able to talk about this diagnosis and treatment without finding myself on the verge of a breakdown.

I'm definitely getting there.  I had those conversations today and stayed composed  I laughed really hard about the silliest things today, and I said amazingly witty silly things that I hope have made other people smile or chuckle. It's still a work in progress, but I'm headed in the right direction.

Aidan goes for more chemotherapy today.  It's just an outpatient visit and he just gets one dose of a single medication.  I hope that it doesn't hit him too hard and we can continue to ride this happy wave we are currently on, but we'll deal with whatever happens as best we can. 

Lies

At some point when I was little, I believed as most children do that everything grows on trees (or at least from some type of plant.) So it was one spring that I went outside and planted a lollipop stick at the base of an existing tree.  I don't know if it was the next morning or several mornings after, but I vividly remember walking outside one morning and seeing that tree covered in fresh lollipops. Of course, I eventually learned that lollipops, in fact, did not grow on trees. Over 30 years later, I still hold onto to that memory and now it is a reminder of how much I was loved.

I thought of this memory last week when we were readmitted to the hospital on the oncology floor.  We were so excited to be discharged from the hospital the day before that we accidentally left Aidan's stuffed monkey, Coco, in our room on the 7th floor.  When we realized what had happened I called the hospital and checked with the nurses on the unit we were previously on.  I called and asked if Coco was in the lost and found. Neither called proved successful and Coco was unfortunately lost.

Coco was just an ordinary Toys R Us stuffed animal and we actually had another identical monkey in the house. When you're nine though, it's just not the same.  To his credit, Aidan didn't make a big deal out of losing Coco but you could tell he was pretty sad and disappointed.  When we went back into the hospital we told him we'd keep asking around and hopefully Coco would turn up.

The next time my parents visited we had them pick up another monkey from Toys R Us.  We had initially just planned to present it to Aidan as a replacement to Coco with our sincerest apologies for being neglectful and losing the original Coco.  When the new monkey arrived though I flashed back to that lollipop tree and Jamie and I decided it would be OK to tell him a little lie.

We gave the monkey to his doctors and explained the situation.  Not only were they receptive to participating in our little ruse, but Dr. Courtney made sure that we had removed the tags and even roughed up the new Coco so that he looked like he'd been stuck in the hospital laundry.

The reveal couldn't have went any better.  Seeing the joy on Aidan's face was definitely worth the deception. 

I said in the very first post that I planned on being very emotionally honest and this is going to be one of those times.  

I know that a big reason why Aidan is handling all of this so well is because he trusts us implicitly when we tell him that everything is going to be OK - that despite how awful the chemotherapy will be at times, we just have to get through it because he is going to be fine.  And I hope and wish that we are telling him the truth, but we can't know if we are. We have no guarantees.  The weight of it is almost too much for me and it's why I am so often just on the brink of tears.  I'm okay with lying about lollipop trees, replacement monkeys, Santa Claus, and the tooth fairy, for example. But when I hug him and tell him everything is going to be okay,I can't have that be a lie.  

Stronger than me?

Those of you that have had a chance to get to know Aidan, know that he is an incredibly smart and compassionate boy.  For those of you who may be reading this who don't know him that well, let me tell you why he is amazing.

I know that in a previous post I had said I wasn't going to attempt to individually thank all of the people who touched us with their generosity and support because undertaking such a task would be near impossible.  I do have to make an exception to tell this story, however.  

The Bentworth school district and Aidan's principle (Susie Macik) in particular, have gone above and beyond for our family. Not only have they worked with us to ensure that Aidan doesn't get academically left behind during this ordeal, they have also made sure that he is not socially forgotten either.  He has received piles of cards from his classmates,  They are actively participating in a wonderful program called "There's a monkey in my chair" (http://www.monkeyinmychair.org.) Mrs. Macik, even came to visit him, bringing him a Rubik's cube and balloons and Jamie and me hugs and kind words.  She also organized a video chat with Aidan and the entire 4th grade the afternoon before he started his chemotherapy.

Aidan settled into the hospital rocking chair and after a little bit of technical difficulty he was connected via Skype to all of his classmates and teachers.  Jamie and I had asked Dana, the child life specialist on our floor, to be present in case Aidan received any questions that he wasn't comfortable answering.

Initially the questions were the kind you'd expect from 9 year olds.  How is the food, is there fun stuff to do, Did Aidan get their cards, etc.  I could see that as the video chat progressed he was becoming more comfortable.  When their weren't any more "easy questions" left for the kids to ask, the chat got a little awkward.

Without hesitation, Aidan said "Does anyone have any questions about why I'm here or what I have?"

One of his classmates immediately asked "What do you have?" 

"I have a kind of bone cancer.  It's in my back and I have to get a lot of treatments for it.  That's why I can't be in school because the treatments will kill all the bad cells in my body but the medicine will also kill some of my good cells too and my immune system won't be very strong so I could get sick if I came to school."

He went on to talk about how he would lose his hair and would probably wear a lot of hats and how he might be really tired from the chemo etc.  In all 9 years of his life, I don't know that I've ever been any prouder of him than Watching how frankly and eloquently he was able to talk about his diagnosis with his classmates.

Aidan has always been a sensitive kid.  There have been many times where I thought and even told him that he needs to toughen up.  He has no pain tolerance at all.  He cries at getting band aids removed, his phobia of needles is off the charts (I don't think any of the patients or staff on the 9th floor will soon forget him getting his flu shot on discharge day) and he even sometimes gets teary when things don't go his way on his favorite video games. But let me tell you, that boy is tough.  He is so incredibly and unbelievably strong. He is an inspiration to me.  

I hope that I can be as strong as he is through this journey.

The irony of chemotherapy

Last Wednesday, we finished all the diagnostics and Aidan took his first dose of chemotherapy to begin to actually treat the cancer.

I expected to feel relieved, even thankful that we were on the road to remission. Instead I had to leave the room for a minute because I could barely keep it together. Aidan, of course, was fine.  I think he played his Nintendo 3DS the entire time. 

Up until that point, I think I had held onto some small sliver of hope that the oncologists would tell us they misdiagnosed him, that the biopsy samples got mixed up in the lab, or that I'd wake up in my own bed, shake Jamie awake, and upon telling her all the details receive a comforting hug as she told me it was just an AWFUL nightmare.  When he started chemotherapy, that hope (however slim it was) was shattered.  It was official, Aidan was a cancer patient.

It also didn't help that the nurse giving the chemo was dressed like she was from a hazmat team on the scene to clean up some horrendous chemical spill. She came into his room covered in a huge plastic apron, safety goggles, latex gloves, and ran the scene like she was orchestrating a military exercise.  She wouldn't even take the medicine out of the plastic bag to put in on the pump.  This stuff is apparently so dangerous that we can't risk it dripping on the floor or coming in contact with human skin, yet we are pumping it directly into my son's heart to be distributed throughout his bloodstream. 

After verbally confirming that he was the correct patient and he was about to receive the correct medication, she turned on the pump and we watched a deep red substance that looked more like kool aid than medication slowly fill up his picc line.  30 minutes later, it was done. 

Last Wednesday Aidan got his first dose of the medications he needs to be cured, and it broke my heart.

Now Our Hearts Are Full

So for the last day or so, I've had the chorus of a Morrissey song constantly dancing around in my head.  I'm sure that information and knowing where we are and what we are dealing with would lead you to believe that I might be more than a little down or struggling a bit.  I've had quite a few of those moments in the last week or so, and I expect to have many many more, but right now that's not the case.

The lyrics that keep circulating in my head over and over are:

Now my heart is full

Now my heart is full

And I just can't explain

So I won't even try to

Unlike Morrissey though, I'm going to actually try to explain it. Since we received this diagnosis on Friday we have cried at least once per day over the generosity and support we've received from the hospital, our family and friends, our community, and complete strangers who, through their various foundations have tried to brighten our day and make this journey a little easier for us.

We have literally been overwhelmed at the outpouring of support we have received. Our facebook statuses have just exploded with likes and comments and our inboxes have been flooded with words of encouragement and people asking what they can do for us and Aidan.  His room is filled with cards and toys (I honestly don't know how we are going to get this stuff home) 

I really can't even begin to detail all the ways big and small that people have touched us with their generosity.  I feel like if I tried, it I would inevitably forget someone. We've had so many people give of themselves for our family it's hard to keep track of it all with the stress we are under dealing with this cancer diagnosis and our upcoming treatment.  Please know that we appreciate every kind word, every offer of help, every gift sent, every visit made etc.

Our hearts are full, because of all of you.  We love you and thank you.

Live The Proof

Though I imagine that most of you coming to read this blog already have a pretty good working knowledge of our situation, I feel like the very first post should probably contain a medical recap just in case. Our 9 year old son, Aidan has been diagnosed with Ewing's Sarcoma, which is a form of bone cancer.

Our diagnostic road began at the end of July when Aidan began to complain of pain radiating down his leg and later into his pubic region.  We treated the leg pain as most parents would with rest and Tylenol.  When he began to complain about pain in his private area we became more concerned.  Because Aidan only has one kidney (which is another extremely long medical narrative) we were concerned he may have a urinary tract / bladder / kidney infection and took him to the pediatrician. She recommended we take him to the Children’s hospital ER if the pain didn't improve.

So a couple of days later we found ourselves at the Children’s hospital ER. We went through a series of tests and were admitted to the hospital for a suspected infection of his S2 sacral vertebrae which is technically called osteomyelitis.   

We spent almost a week in the hospital while teams and teams of doctors worked on figuring out exactly what was wrong.  Aidan had several MRI’s, bone biopsy, X-Rays etc and though the Drs.  couldn’t confirm with 100% certainty (The cultures taken from the biopsy did not grow bacteria – which is not uncommon) we were given a diagnosis of osteomylelitis and Aidan was sent home with a picc line which he would receive 6 weeks of antibiotics (3 doses a day) through.

Through the course of his treatment at home, he felt great and his blood work supported that he was getting better (the inflammation markers that were elevated upon admission continued to drop throughout the course of his treatment) On September 6^th, Aidan took his last dose of Antibiotic and the picc line came out the next day.

Almost a week to the hour that Aidan had his last dose of antibiotic, very similar symptoms returned.  On September 15^th we came back to the Children’s hospital ER.  We were admitted and the diagnostic process began in earnest once again.

I could probably write 3000 words about all that happened during our second week in the hospital and the perplexing medical details that emerged from all the testing that confused even our really smart and awesome Drs.  In the end though, the best diagnosis we could get was that it appeared we didn't treat the infection long enough (which also isn't terribly uncommon) and we’d need a much longer course of IV antibiotics from home (3 months) followed by a course of oral antibiotics (3 months). 

On the afternoon of the 21^st of September, we were discharged.  We were all so happy to be going home, but none of us more than Aidan.  We weren't home for more than an hour when we received the call turned our world upside down. 

Jamie took the call. I could tell that something was wrong and I kept begging for her to tell me anything.  In my mind it seems like that it was hours before she moved the phone away from her face and told me that Aidan had bone cancer.  

I plan on being extremely emotionally honest on this blog but THAT moment and THOSE feelings are not for public consumption.  I don’t know that I could adequately put them into words anyway, so that moment belongs to just us.

The doctors told us that we’d have to come back either that night or the next day.  We opted to allow Aidan to sleep in his bed for at least one night and set everything up to go in Saturday Sept 22^nd we decided not to tell Aidan that we had to go back until the morning. 

We got ice cream cake and pizza rolls.  We played the Wii and danced around the living room.  We hugged him a lot and tried not to cry too much.  When we did, we told him it was just because we loved him so much. 

The next morning we told him that we had to go back for more testing and he was sad which of course made us even sadder.  We all agreed that as a family we’d do whatever it took, so we put on our happy faces and headed back to Children’s hospital.

We were admitted to the oncology floor and after being in our room for a while we met with his Drs. who walked us through the diagnosis and a general sense of what our treatment plan may be.  Then they came back to the room with us and helped explain his diagnosis to Aidan in a way that he could easily understand.  At that point we didn't use the C word.  But Aidan did know that name of his disease and that there was a tumor where he was having pain.  We have since talked in depth with him about everything.  He knows he has cancer.  He knows that the chemo will make his hair fall out.  He knows that sometimes he’s going to feel really crappy.  Obviously he doesn't fully understand the gravity of the situation but perhaps that’s a good thing.

Since being admitted Aidan has been through a lot of testing.  He has had a CT scan to check for tumors on his organs.  He has had a bone scan to look for tumors in any other bones.  He’s had a bone marrow biopsy to see if there was any cancer in the bone marrow.  He’s had a PET scan from head to toe to look for any other cancer cells anywhere else.  All of those test results have been excellent.  The cancer is localized to that S2 vertebra.

Our course of treatment is 9 months of chemotherapy and possibly surgery / radiation.  It will be a long hard road for us but we are determined to make it.

The title of this blog is borrowed from Jim Boggia’s song of the same name.  We have always loved the song, but now it takes on much more significance for us. The song is about being and creating the change you want to see, and that is exactly how we plan to attack this battle we are now beginning.  We will LIVE THE PROOF