Hooperpalooza: October 2014

I last posted about Scott's bucket list. Our goal is simple: to have Scott live life to its fullest.

Little did we know that we would start checking off items on his list just a few days later. It all started with a call from my dad. He said he was trying to contact folks with the local Harley Davidson group. He really wanted to give Scott one last motorcycle ride, even if it was in a sidecar. He didn't have much luck with the Harley folks, so he settled for social media with his plea.

My dad's post: Looking for someone who has a motorcycle with a side car who wouldn't mind giving my son in law who is terminally ill with cancer one last ride. He is an Iraqi Veteran and can no longer ride. Doesn't have to be a long ride. I will definitely pay all expenses.

I cried reading his post. My father, with a heart so big, just wanted to do something for his son-in-law. My dad didn't start riding until after my husband started to ride. They did some scenic rides together, before we had to sell the motorcycles to pay off bills. It was defintely something they bonded over. I asked my dad if I could share his post on our group page and guess what? Within an hour, we had a rider who could take Scott out to Woodland Park and back!

One of my co-workers, Joe, made contact with Doyne from APEX sports. He came with his motorcycle and a sidecar for Scott to ride in. Accompanying Doyne and Scott, were Joe, my dad, Drew, Jason, Eric, and Matt. They rode out to Woodland Park, stopped at the Donut Mill, and rode on back to meet us at Palmer Park. Two other friends came to cheer them as they rode away, Charlene and Tamra.

Let's just say, Scott was on cloud nine. He texted me some selfies during his ride and was definitely upbeat and cheery. It was nice to see him so happy. He had been in so much pain lately that I was afraid he wouldn't enjoy the ride.

One of Scott's selfies during the ride!

Shortly after posting the list to our group on Facebook, the response has been quite overwhelming. So many people have come forth to help make his life so much more enjoyable. I cannot wait to see what else is in store for him!

This week is going to be tough. Today he had his port placed. Tomorrow, he has chemo.

On Sunday, October 19th, Scott, the kids, and I did a photo shoot in the backyard. Scott assisted me with taking pictures of our children in a huge pile of fall leaves the girls raked up the day before. Their beautiful smiles and joy captured through the lens of my camera. Before Scott headed inside, he sat on our deck and the kids surrounded him. I captured a few photos and then helped him inside, where he quickly fell asleep. Tired from all the activity. His back has been gradually hurting him more and more. His buttocks would warm up like Icy Hot was rubbed on it. He would wince in pain as he cough and sneezed. His energy just drained from him.

I sat at the desk next to him in our bedroom. I inserted my memory card to begin uploading the 100+ photos I took that afternoon. As I immersed myself in my work, my phone rang. I didn't recognize the number, but I answered anyway. It was the nurse practitioner Scott saw earlier in the week. Something wasn't right.

"Hi Mary. Did anyone call you on Friday about Scott's MRI?"

"No. Why? Was someone was supposed to call?"

"Well, I don't know how to say this, but the cancer is in his spine"

I'm surprised my stifled gasp didn't wake up Scott. I quickly left our room as tears welled up and streamed down my face. I found myself sobbing, sitting on our living room floor. The kids, I thought were still outside playing with the leaves. Tristan, however, had come inside and saw me there crying. He was concerned but I told him I'm okay and to go outside and play.

She didn't know what it would mean for Scott and she was going to talk to his oncologist. Scott had an appointment the next morning, so we would know more then. She noted that this was not a good thing and she was concerned with how he was feeling. She informed me that if he felt worse, to take him to the ER.

This wasn't what I expected. His MRI was just to confirm slipped discs, bulging discs, anything like that. Not more cancer. Really?! I was devastated. My sweet husband slept oblivious to what I just found out. I then called the only person I needed at that moment. My dad. I sat out front, tears falling down, crying my heart out. He and his wife were on their way.

After they arrived, they helped me with dinner and the kids. My dad came in the room with me to tell Scott the news. He saw the tears in my eyes and a look of confusion came over him. He was devastated. Confused. Angry. After we left him alone to take care of the kids, we heard a loud bang in the room. I ran to the room to see him in tears. He'd thrown his hand brace in anger.

The following morning, we met with his doctor. It was spread throughout his spine. They would need to put in a port. He'd have to do a chemo drug intravenously. Radiation is possible. Prognosis: months. We were told to start making those hard decisions. End of life decisions. This was it. This was what has been weighing on my mind since the words "brain cancer" came out of the ER doctor's mouth on February 18th. It is what I've been mentally preparing myself for, even though I so desperately wanted Scott to beat the odds. It is what consumes my nightmares and fills my heart with dread.

This past week has been a roller coaster of emotions and events. He met with his radiation oncologist. Again, we're told things are definitely not looking too good. We got to see the scan and basically his spine is lit up along the entire length. Cancer cells likely inhabit his spinal fluid as well, which means surgery is definitely not an option. His oncologists have consulted with doctors across the nation and are still reaching out to others (MD Anderson, etc). But unfortunately, Scott is an extremely rare case. First, he is pretty young for Glioblastoma, an aggressive brain cancer. Second, he is old for PNET (Primitive Neuroectodermal Tumor) which is a pediatric cancer. They originally were treating just the Glioblastoma, which is the more aggressive of the two types of cancer. Unfortunately, the PNET component is what has taken over his spine. Metastases to the spine (Leptomeningeal metastases), especially to the degree it has done to him, is devastating and rare. Nearly all cases of PNET treatment when it comes to the spine have to do with pediatric patients. So, it is basically guesswork with what could work with a full grown man. There are no clinical trials available due to the fact that his case is extremely rare. So, we've been told there are three options:

1) Do nothing. Symptomatically, his back pain will worsen. He would be looking at just a few months at the most.

2) In addition to chemo, do a palliative approach to radiation (2 straight weeks of radiation). This will minimize the back pain, making him more comfortable. No timeline estimate can really be given, but may extend his life beyond just doing nothing.

3) If his brain scan tomorrow comes back clean, then an aggressive approach with radiation is an option. They are not sure how much time it might give him, but complete cure is very unlikely with how much it has metastasized. It would be five weeks straight of radiation with chemo. He will be miserable, sick, and his cell counts will drop considerably, leaving him very vulnerable to illness.

His doctors are heartbroken at his prognosis. His radiation oncologist looked defeated and wished he could have done more for him back in May. We have the utmost respect for his doctors and believe they have done the best they could for him.

Well, as if more bad news couldn't be a part of our week, we got the news that it is in his brain stem as well. They did an MRI of his brain to see if there were any new developments. Well, there was.

I'm floored by all of this. It is all happening too quickly. His back pain when from non-existent to pain meds round the clock in a matter of weeks. His mood waxes and wanes, where he's mostly weepy, sad, and angry. We were just enjoying the company of friends last weekend, playing in the leaves. My mind has been racing a mile a minute and I don't see it stopping.

Our goal is to make whatever time Scott has left as enjoyable as possible. We are in the works of planning a family trip to Disney World. Scott has made a bucket list, found here:

https://docs.google.com/spreadsheets/d/10TQpLw4YUq7rkPiqnKxbsujKovE_d-YnC4WvUMTr3QM/edit?usp=sharing

We are going to make the most of it. We are going to create memories, especially for the kids. I can't even begin to think of how this will impact them. These kids, so innocent. They don't deserve this.