small pieces of joy

pieces of joy in each day

majestic

on July 30, 2014

I have been preoccupied with thinking about this day a year ago. It was the day we saw the Grand Canyon with Dad. It is a mixture of emotions which has brought both happy and sad tears throughout the day today.

I wrote about the trip a few months ago in my effort to record memories from our journey. I want to share it with you so you have a little insight into why that trip was so unforgettable for me and my family.

To know that we were able to experience something so generous, so full of love and joy, in such a time of despair  is truly unbelievable.

 

The news that Dad’s tumor had grown again came about a week after their visit with me. And this time the prognosis was a stab through the heart. One to three months left. The tumor had tripled size in just two weeks. We all were in shock. My family told me through video chat while my friend Sarah was with me. I remember shouting “NOOOO” and bawling. I think Dad was sitting at the computer after they told me the news and he looked so calm, so collected. I’m not sure if he really knew what was happening.

My brother gave me the recap of the visit to the doctor. When they saw the MRI results they began to discuss treatment options. As the doctor danced around the issue, Dad asked point blank what the timeline was like with treatment versus without. With an increased dosage of chemo it would be up to three months. Without treatment it could be up to three weeks. And dad said, “well then we’ll continue treatment.”

So Dad would continue his pill chemo and have a raised dosage of the infusion chemo every two weeks.

After hearing this news it was time for me to decide when to come home to spend more precious time. We had a video chat with Dad about what he might want to do as far as bucket list items. We decided that we should try to go to the Grand Canyon because that was a place he always talked about going but we never went. Without much delay my aunt took to facebook and asked for anyone who was willing to donate miles to get flights to Phoenix for six people. In less than 24 hours we had six flights paid for and two rental cars. In addition to that we found a house we could stay in for the week, free of charge. It was all coming together! We had almost all of this in place even before I came to Kansas City a few days later. The plan was for me to go to KC for two weeks, then we all would fly to Phoenix and Jonathan would meet us there. We would spend a week in Sedona and one of those days would be a visit to the Grand Canyon National Park.

The weeks leading up to the trip were so full of anticipation and joy. We were getting news each day of the creative ways people were showing their support for our trip. We got a few gift cards for meals while we were away, and some people even contacted restaurants about our story to find out if they could help us out. A foundation donated a helicopter ride over the canyon and we had some donations to help pay for the private van tour of the park. SO much love surrounded us in those two weeks prior to the trip is was hard to fathom how much more we could receive on the trip!

It was very strange thinking about the trip as our last family vacation. I know it only crossed my mind a few times, but when it did it was just too much to handle. It’s not normal to know when your lasts will be. They just happen and you move on without having to mourn the loss of whatever last you were doing. But after getting a prognosis like we did, it was very real when our lasts could be and dealing with that knowledge was a lot to bear.

Thankfully those thoughts didn’t last long because we had so much to do. My family never planned elaborate trips, especially since we did not have good experiences with flying! We joked that our family can’t fly based on our last fiasco flying as a family. At least this time it would be direct flights and my aunt would be there to save us if the need arose.

Dad seemed mostly excited and a little nervous. I think it was hard for him to not be in control because he kept asking about what the plan was and trying to anticipate our every move so he would be prepared.

This was the first time we had Dad in a wheelchair, so that was a learning experience in itself. Also because of Dad’s trouble with controlling his bladder we had to make accommodations to find family bathrooms so mom could help. For the most part the airports were pretty good with providing the assistance we needed. I think it was just a humbling experience for all of us to see the reality of Dad’s decline.

We have an amazing picture of Dad in the bulkhead seats with a huge smile on his face. We could tell that he was very excited to be going on this trip. What a thrill it must have been for him to know that he was going to be seeing a place he had always dreamed of seeing, even in the state he was in. He must have known how difficult it was for all of us to get him around and make him comfortable, but we all knew it was worth it.

bulkhead photo

 

We got to the airport in Phoenix only a little before Jonathan, but we had to wait for Uncle Jeff and Mom to go get the rental cars. It took a very long time because there was a shuttle to the rental cars and there was some kind of confusion so they took two trips. While this was happening I was waiting with Dad and George. We all were a little tired, and knowing we had a two hour drive still ahead, we were getting anxious. I just remember talking with Dad a little, moving him around for different viewpoints. I remember being a little nervous being alone with Dad because I didn’t know what to do if he needed something. But thankfully he was acting fairly content so the wait wasn’t too bad.

Once we figured out the car situation, everyone was able to start the drive up to Sedona. Jonathan George and I got our car situated and headed out just a little earlier. The drive was incredible. One because I had never seen a live cactus before, and two I couldn’t believe we were actually there. Especially since three weeks before the thought hadn’t even crossed our minds. It is amazing how quickly things can change!

On the drive up my family saw rainbows, and double rainbows, as they crossed the various terrains as the rain storms passed through in lines. My car was a little ahead of them so we didn’t get to see them. But I was fascinated nonetheless.

We arrived at our new home for the week and the excitement could be felt throughout the house. We did have to start figuring out how to make the place as wheelchair accessible as possible. As we were assessing that situation Dad needed to use the bathroom. For some reason mom wasn’t available so Jonathan and Bernadette helped dad. I had a very hard time with that, and I know dad was embarrassed for Jonathan to see him that way. But my husband, as always, was a class act. He talked about how he had to help his parents when they were going through cancer treatments, which I think made Dad feel better.

We were getting settled for the night when my brothers found a tiny scorpion in a bag with a comforter in one of the rooms. This freaked most of us out, especially since we had never seen one before, and now they could possibly be anywhere!

The next morning most of us went to Mass in Sedona at a church where the traveling priest thought he needed to take as much time as two homilies would take. This is bad news for a nine month old and a frustrated mama. We had lunch and Mom and I went to do some grocery shopping for the week.

That night was one of the best nights. We made a fire in the chiminea in the backyard and simply enjoyed our new home. The sky was clear and the stars really put on a show. We didn’t want Dad to miss it, so we basically dragged him outside to see it. Dad said the sky gave us a concert. What beautiful words. We enjoyed crisp air and fun conversation with the family. The only word I could think of to describe that feeling was wonderful. Seeing Dad smile warmed my heart. 

bricks

 

This was our ritual most nights. One time we brought dad out to the patio and put him in a nice reclining chair, making a leg rest with a pile of bricks. I know it was so much work to get him out there each evening, but I know once he was out there he was happy we made him come. He said it reminded him of the nights when we all went camping together, watching the fire. He always watched the fire. I remember him staying up later than all of us, sitting in the peace and quiet watching the fire burn down and die. I never really understood what he liked about that. Maybe I will someday.

One of the first days we were there we thought it would be good to explore our surroundings. There was a trolley ride through the town which sounded perfect in theory, but as we discovered more about it it seemed less and less desirable. So after some debate we decided just to drive around the place ourselves and see what we could discover.

The landscape was out of a dream it seemed. Beautiful red rocks surrounded our every step, and blue sky wrapped them in a perfect box. We found a lookout after only driving a few minutes. We decided to stop there for some photos because it was the best view we had seen yet. After five minutes.

We did manage to get Dad out of the wheelchair and onto a rock and we all filled in behind him. It was fun taking the different family shots and seeing if we could get everyone’s smiles to cooperate.

As my aunt tried to set the timer on her camera we all joked about snakes and scorpions. Aren’t we a loving bunch.

That photo from our impromptu drive does really speak more than a thousand words. And it was only our first day.

rock

 

The most active day was our trip to the Grand Canyon National Park. A private tour van came to pick us up at the house early in the morning to drive us two hours north to the park. The van was spacious and included all the drinks and organic snacks we could want. Most of us had our own captain’s chair style seat and enjoyed a nice view out the big windows.

Our tour guide was a true jack of all trades. As we drove we learned of his many jobs and hobbies, including adjunct teacher at a college, swim instructor, mountain biker (he is trying to ride all the trails in the Flagstaff area), and of course Grand Canyon tour guide. He had to of been a boy scout, too.

The drive was beautiful and educational. I enjoyed the back with my two younger cousins. We joked around a lot and really enjoyed the nice time together. Dad was up in the front and he enjoyed talking with the guide a little, at least listening to his many stories and facts that seemed to just flow right out of his brain.

We arrived at the park, and we were still a little unsure what we were about to see. The guide took us to one of the less populated lookouts, the one he thought was the best. The park was pretty well designed for handicapped people, but it still was difficult getting Dad around. The bathrooms were not very accommodating, so I think that was preoccupying Dad a little.

When we got to the lookout all I remember was everyone saying, “wow.” After the pure shock and awe started to fade we tried to find words to describe what we were seeing, but really came short.

“It doesn’t look real! It looks like a painting! This is not at all what I thought it would be!” We cried with excitement.

DSCN0830

 

In all his awe and amazement Dad made sure to say that he wants to thank everyone who helped to get him there. The way he said ‘This is Awesome’ I hope never escapes me. It was pure, honest, and probably the most he meant that phrase right in that moment.

We took many family pictures at a few different spots throughout the park, jaws dropping at each stop. We imagined what it would be like to walk in the bottom of the canyon, or go camping down there. But when we heard about the twenty degree difference in temperature, we were happy where we were.

We had a beautiful lunch at a picnic area where I had to gloriously pump milk in a corner while our tour guide set out lunch. The tablecloth and real plates were a little overboard, but it was so lovely. The food was delicious and it was a nice break to sit and chat about what we saw so far and what we anticipate when we see it from the helicopter.

We arrived at the place where we would take the skies a little before our scheduled time. I think we all were a little anxious, mostly about getting Dad into the helicopter and how it would be for him.

After a lot of muscle strength from my mom and brothers, and the pilot, we got him strapped in and ready to fly. We all were wearing headsets so we could talk to each other through the whole flight. It took a while to get to the actual canyon so we chatted while the inflight music played and we glazed over a large forest. That was so crazy because the anticipation was so large and hard to contain. The pilot told us we were coming up to the edge so we waited and waited then bam! There it was! It was like the ground just dropped and opened to a magical world. There were layers and layers of color with a river dancing through with the slither of a snake. AN old road looked like string laid along the side of the canyon, and the trees were just mounds of green. It was unbelievable how large the canyon was and that we were only over a section of it.

Right as we flew into the canyon Dad spoke one of the most memorable sentences ever.

“My bucket list is complete. I’ve now seen something majestic.”

And we have that recorded, since of course we bough the DVD of our flight.

Talk about a perfect moment, frozen in time. All the worry, frustration, and difficulty to get Dad there was worth it. More than worth it. To see Dad smile warms my heart. Every time. And this was another one of those times.

He said that God gave us a blessed family day. 

 

I am so thankful for all God blessed us with on that trip. I just wish it wasn’t our last family vacation.

 

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3 responses to “majestic

  1. Grandma says:

    thanks for sharing wonderful memories!

    Like

  2. Keithy says:

    Great recap. But….you forgot about all the food we had in the van! 😉

    Like

  3. Hi, Kari. Thanks for commenting on my blog; I’m glad you came across it as it indeed appears that we have something in common in losing our dads to GBM. This post about your last trip together brings tears to my eyes; the perspective all of you were able to have in spite of the hardship and sadness is nothing short of amazing. I’m interested to know what the medical team has said about the fact that both your dad and your grandfather were diagnosed with this disease; we were told by the specialists at the Robert Preston Brain Tumor Clinic at Duke University that GBM is not considered to be genetic in nature – but your family’s story makes me wonder if that isn’t yet another piece of the puzzle that just isn’t known yet. What you said in your message on my blog is so true: the secrecy of GBM contributes to the tragedy of the prognosis. As a health care professional myself, I have been surprised many times when I’ve told colleagues (and even my family doctor) about my dad’s diagnosis and other people have no idea what I’m talking about as they have never even heard that there are different types of brain cancers. I look forward to reading back through your posts, and I’m glad we have connected. Peace to you and yours!

    Like

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