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