I wish you could see the moment Brandon walked in to the hospital room and how my son’s face lit up.

It was May of 2015. 5 months earlier Parker had been diagnosed with bone cancer.  He had gone through several rounds of chemotherapy, and he had just had surgery to remove 5 inches of his Tibia a month prior.  This hospital stay was for a skin graft to repair an area of the surgery site that was rotting away. 

Parker was bored.  The hospital is a boring place.  He was playing his PS4, but he put the controller down, looked at me and sighed. Just then I got a text saying they had arrived.  Perfect timing.  4 football players were waiting in the hall to see Parker - Brandon Snyder, Parker Hesse, Sam Brincks, and Jake Gervase.

They came in like they had known Parker for years.  They talked about their favorite football and basketball teams.  Hesse told a story about crying when the Packers drafted Aaron Rodgers because he didn’t think he’d be any good. It reminded me of Parker spiking his Greenbay football in anger when he heard Favre was leaving.  He was only 6 years old, but he loved football. There was a lot of laughter and a huge smile plastered across Parker’s face.   

Not one of them had seen any game time yet, but that didn’t matter to Parker.  He was in awe.  He could not believe these big, strong football players were cheering him on.  What would have been a mundane, incredibly boring afternoon, turned out to be one of Parker’s best days in the hospital. 

I remember thinking the visits were probably not all that exciting for the players, but for my 13 year old son, they meant the world.
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Then Brandon expressed that he came in to that hospital room thinking about how big of an impact he could make on Parker, but he didn’t realize how big of an impact Parker would make on him.  Parker had inspired him. 

He began messaging Parker, always sending words of encouragement. Parker would message him back and encourage him to beat whatever opponent they played next.  It was a fun football season.  They were 12-0.  Parker would try to fight through the nausea and fatigue to watch every game.  Sometimes he succeeded.  When he didn’t, the first thing he’d ask when he woke up was how Brandon played.
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Brandon’s last visit to Parker was during Parker’s last chemo treatment.  He flew out the next day for a game.  We’d run in to him at Dance Marathon, and he kept in touch with Parker.

The following football season, nominations for Kid Captain opened up.  I asked Parker if he wanted me to nominate him and he answered with a resounding “Yes!”  He talked about how the football players had cheered him on and this was his opportunity to cheer them on.  When we found out he was chosen as a Kid Captain, he was ecstatic!  Parker was the Kid Captain for the Iowa vs Iowa State game.  It was also the same day as his 15th birthday.  As they lined up for the National Anthem, Brandon put his arm around Parker.  He told Parker to keep fighting.  Parker said he would, as long as they won that game.  They did.   42-3.

We went to more games.  Brandon and Parker Hesse would meet up with us afterwards.  After a devastating loss to Wisconsin, Brandon came out of the locker room absolutely crushed.  Parker didn’t hesitate and rushed to give him a hug.

Parker then faced a rollercoaster with his leg.  He had an infection that required his leg to be amputated.  Then the infection went away.  Then it came back.  Brandon prayed the throughout the entire ordeal.  He celebrated with us and grieved with us. 
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Brandon was a big part in Parker trying out for and making his high school basketball team.  The Iowa football players, basketball players and a local Paralympian, all of whom had visited Parker, had encouraged Parker.  They convinced him that nothing could stop him, and they showed by example that if he worked hard enough, he could make his dreams come true.

When Brandon tore his ACL, we were heartbroken.  By now, we knew Brandon.  We knew how much football meant to him and how devastating this injury would be to Brandon.  We celebrated his return and cheered louder than anybody else when he had the pick 6 against Illinois on his first game back. 

Then it happened.  Another torn ACL. 

Parker’s temper flared at the cruelness of it all.  His amputation being cancelled only to have the infection return and his leg amputated a few months later; Brandon tearing his ACL not once, but twice.  If he was this frustrated and angry; he couldn’t imagine how Brandon felt.  How demoralized he must be.  Parker compared it to how he would feel if he were to relapse with cancer again.
 
Then we read about Brandon’s OWI.  Here was this amazing young man that made a mistake, and the cost was severe.  On top of facing a court of law, his family and his coaches, he also had to face public humiliation.  I obviously don't condone what he did, but I also couldn’t help but to think of what Brandon had just gone through with his injuries.  I understood how it could happen.  What I didn’t understand were all of the negative comments on social media.  People were name calling and attacking his character.  They didn’t even know him.  I wanted to yell from the rooftop about how great of a person Brandon is and how much he had helped my son.  I wanted to shame people for not being more understanding and sympathetic. 

And while the public humiliation was bad enough, I also have no doubt that Brandon was his own biggest critic.  He had to face himself, and that was a bigger battle.  A battle that Parker and I will proudly stand next to Brandon during while he figures everything out.

When I heard a rumor that Brandon was leaving Iowa, I sent him a message asking if it was true.  "Sadly, it is." he replied.  He went on to talk about Parker and how much he meant to him.  He again offered support and told us he was there for us if we ever needed him. 

And look, I don’t know the entire story.  But here’s what I do know, I love Brandon for all he did for my son.  I know he will overcome this.  I know he will do great at South Dakota State University.  And I know that beyond college, the future is bright and he can do anything he puts his mind to. 

Brandon - You’re stronger than you know.  And just like Parker, you got this.  We’re here for you 100%. 

CureFest’s mission is to make childhood cancer research a national priority.  The government only allocates 4% of cancer research to childhood cancers, and we don’t think that is an adequate amount for our children.

Friday we got up bright and early and headed to the airport.  When we arrived in DC, we took a cab to the hotel, checked in, and decided to take a bus tour of DC.  The tour was a nice way to fit in a lot of sites in a short amount of time. It ends at the Lincoln Memorial where you can hop off and see an amazing view of the Washington monument before making your way up into the Lincoln Memorial.

Saturday we met with other Ewing’s families and made signs that we would use during the march to the National Mall.  We’re all part of the 1Million 4Anna foundation which helps Ewing’s Families.  Anna passed away from Ewing’s Sarcoma and her mom does an amazing job bringing us all together.  They’re doing a pretty awesome thing in memory of their daughter. The camaraderie and support is fantastic not only for Parker, but also for myself.  

We then met with other families and supporters at Freedom Plaza.  We gathered in groups and began our march to the National Mall.  We followed the leaders with megaphones and chanted “More Than 4”  and “Please don’t look the other way or you’ll be marching with us someday.”  Many people watched us and read our signs. 

When we arrived at the National Mall in front of the Capitol we took a group picture.  We then talked to other families, hugged the people we hadn’t seen since last year, and met new families and supporters.  On the walk back, I talked a bit with Tom Mitchell, also known as Tattoo Tom.  Tattoo Tom does this crazy thing where he runs ultra marathons and dedicates each mile to a child fighting cancer, including his daughter Shayla who passed after bravely fighting stage 4 Hodgkin’s.  Parker, a while back, donated $200 of birthday money to Tattoo Tom and his foundation Stillbrave. Parker is also one of his kids that he will running for in his next race. There will be more to come on that – Parker will have his own fundraising page and we are going to be doing all that we can to help raise money.

After the march, we headed back to the hotel and grabbed a bite to eat.  We rested a bit in the room and caught a little of the Iowa football game before heading back to Freedom Plaza. 

We met and talked to other families. We even got a little star-struck by some of the kids we follow on Facebook.

They did something new this year with beads, which was quite cool.  Parker wore silver beads as he is out of treatment and NED.  I wore blue for being his parent and silver.  Siblings had a separate color, and parents who had lost children wore white.  There were other colors, such as purple for supporters, but I’m unsure of the rest. I noticed people were using the beads as an ice breaker.  They started conversations and new relationships.  Definitely a good addition.  

Saturday night, there were performances, stories, speeches, many moments of pride, laughter, and tears.  These are moments that will stick with me throughout the rest of my life.  We met one of the speakers last year after Parker gave his speech.  She introduced herself and talked about how she too lost a friend she met in the hospital.  She recently celebrated 5 years of being cancer free.  That all ended when she heard the news that she has relapsed.  She’s determined to fight and beat cancer for the 2nd time.  She was given a standing ovation, and I stood and cried, amazed at how brave she was. Another one of the speakers is a fellow Ewing’s fighter and is still having complications with her leg, much like Parker did.  Their family is incredibly nice and welcoming and her and her sister did a fantastic job speaking and performing.

We ended the night with a walk to the Whitehouse and candlelight vigil.  We stood holding up our electronic candles as the group sang Amazing Grace.

We headed back to the hotel emotional and exhausted. It’s the most walking Parker had done since getting his prosthetic leg.

Sunday all events were at the National Mall.  Parker opened up CureFest as a co-host with two others – Shannan and Caoilinn.  They introduced themselves and then the performers throughout the hour.  There were dancers, singers, and speakers. All were extremely talented and blew us away.

When Parker finished co-hosting, we made our rounds. They had set up tents for foundations.  Foundations that had helped us through facebook such as Ellie’s Hats and One Million For Anna.  Another mom that we had met the previous year started Kate’s Cause in memory of her daughter.  Parker thinks the world of Kate’s mom and was thrilled to see her there.  Yet at the same time, so incredibly sad knowing the reason she was there.  Many booths were passing out wristbands including Kate’s Cause.  He grabbed 2 of Kate’s, just in case one broke.

We walked by the tribute wall which is full of fighters, survivors, and those no longer with us. It takes our breath away every year, especially knowing that just a very, very small percentage of childhood cancer fighters are on the wall.  There are so many that are not, but it still seems like the wall holds too many.

Two of Parker’s favorite people, Everett and John, were also there.  They were even wearing Power for Parker shirts!  We met Everett and John when they ran from coast to coast a few years back to raise awareness for Childhood Cancer.  John gave Parker a tutu (TUTU much cancer!) and taught him a little yoga – something Parker now wants to do back home.  They also started a challenge in which they are going to take turns taking pictures in public wearing their tutus and hopefully answering inquiries as to why they are wearing a tutu – to raise awareness. (It’ll also tie in nicely with an ongoing joke between Parker and my cousin, Ian.)

As events wrapped up, we headed back to the hotel.  We decided to take advantage of the few hours remaining and we went to a few more memorials.  We even went back to the Lincoln Memorial. We had printed off a picture of a little boy named Lincoln from back in Iowa who had passed away from cancer.  His mom spoke at Dance Marathon at the U of IA and Parker wanted to send the picture to his mom. 
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We met so many great people at CureFest and we’re already looking forward to going back next year.  The Truth 365, Mike Gillette and Lisa Luther Shaw do an incredible job organizing this event.  They put in so much hard work and dedication into this event that a simple Thank You doesn’t seem adequate.  Just know that this event changed our lives for the better.  It’s helped us exponentially in our journey, and we appreciate all the hard work you put into it.  Thank you, thank you, thank you.

My last blog post was right before Tori passed away in May.  I haven’t been able to write since.  No words seem to do her justice.  I can’t get it right.  But here’s my best attempt because after all, I did make her a promise.

Parker was getting chemo, and I got a text from Tori's mom, Dawn.  They were at the hospital.  Tori had a fever, and they thought it might be pneumonia.  Her platelets have been low for a while, and Dawn was worried about that too.  I thought to myself, “Oh, she’ll get transfusions and antibiotics and be fine.” 

Tori was only a few treatments away from finishing chemo.  She was considered cancer free. 

A little later in the day, Dawn sent another text.  Lots of doctors were in there.  Tori’s WBC was over 230,000.  She was very sick. 

“I’m scared.” Dawn said in a text message. 

“Do you want me to come down to the room?” 

I left before getting a response.  If it were me, I'd want somebody there for the support.  I told Parker that I’d be right back, and marched down the hall towards Tori’s room. 

I stood outside of her room watching all of the commotion in absolute confusion. What could have possibly happened in the 2 minutes between text messages?  Her room was surrounded by hospital staff, no one else could fit inside.  Dawn emerged, looking stunned.  She came towards me and all we could do was hug.  I don’t even remember if we said anything.  Within seconds, they brought Tori out of the room still in the hospital bed, with a nurse on top of her holding a mask.  Wide eyed, I just watched.  She was still breathing...but what was going on?

“Let me know if I can do anything,” I said, not sure what to say, as they rushed to the PICU.

I was now scared too.

I returned to Parker’s room.

I must have been visibly shaken. 

“Is everything okay?” Parker asked holding his puke bucket.  He had just gotten sick, and I felt bad that I couldn’t be in two places at once.

“Yes,” I said, “They’re taking Tori to PICU.  She’ll get some medicine and be back on this floor by the time we leave.”  

After all, Parker was in the PICU after surgery and the next day we were back on our normal floor and things were okay.  Surely this was going to be the case with Tori too.  

“I’m taking a shower,” I told him. 

The shower had become my way of coping and not crying in front of him.  Anytime I was scared, I’d take a shower.  The hot water calmed me down.  Anytime I wanted to cry, I’d take a shower.  I didn’t want anybody to see the tears, especially Parker.  The shower was my go to.
 
I think it was the next day…it’s all a blur.  Dawn came down to the room.  She needed to get away.  Tori was really sick, but she was hanging on.  She hadn’t been awake since they took her upstairs except for maybe a minute or two.  The situation was scary, but I was in still in complete denial.  She was going to be fine.  I convinced myself of this.

Dawn and I walked around the hospital and talked.  We didn’t want to scare Parker.  Dawn hadn’t showered or eaten, that’s the last thing you think of when your daughter is that sick.  She hadn’t slept either.  She updated me on Tori.  They were doing lots of tests and had her receiving lots of medicine.    

I remembered the day I met Dawn and Tori.  It hadn’t been long since that day.  We stood outside of Parker’s room in the hallway.  Tori walking with her IV Pole and Dawn standing next to her.  We talked about the rash on her stomach and her dislike for the lotion they gave her for it.  She’d rather itch.  She laughed.  She was bright and energetic.  There was a light around her. 

She was known for being feisty and brazen.  She was the type of girl I loved.  Full of strength and fight.  Look at her wrong, I dare you.  You’ll get a look back twice as bad.  She could throw shade!  But when I met her, she was funny and happy. 

Of course, I wasn’t waking her up every 2 hours to go to the bathroom or poking her with needles!
 
As we were standing there, Tori noticed that Dawn had something in her teeth.  Dawn brushed her off and ran her tongue over her teeth.  We continued to talk.  “It’s still there!”  Tori said with a laugh.  “TORI!  STOP!”  Dawn chuckled back.  Dawn used her finger this time as a make shift toothbrush to try to get rid of whatever was in her teeth.  I hadn’t even notice anything in her teeth.  We kept talking.  “It’s still there!”  Dawn was embarrassed.  I thought it was funny.  This family was great.  You could just tell.

Parker came out of his room for just a few minutes to say hi.  He is usually quiet but was more so after just getting medication to battle nausea.  It made him sleepy. 

Tori made a big enough impact on him though.  After they met, Parker promised to try to go to an activity, but only if Tori was going too.  Before, he would tell the child life volunteers “maybe” when they asked him if he wanted to join them for activity.  He was less than convincing though, and he never went.  He and Tori never got the chance to go together. 

That wasn’t that long ago. 

Now I found myself walking Dawn back to the PICU.   Her bright, funny, energetic daughter, now too medicated and too sick to stay awake.

The next day, I sat with Dawn and Tori’s dad, Eddie, up in the PICU family lounge.   We talked about the first time we met, the lettuce in Dawn’s teeth, and how embarrassed Tori had made her.  We laughed a little.  We sat a lot in silence, staring into the distance. 

“Look.  A rainbow.”  I said.  I smiled. 

Dawn and Eddie just stared out the window, holding each other.  It was a brief moment of tranquility.

“It’s a sign,” I told myself.  Tori is going to make a turn for the better. 

The next day, Parker was getting discharged.  Dawn came down to the room, and we went on another walk.  She told me that her family couldn’t find the movie “Coraline” and that she wanted to play it in Tori’s room because Tori loved that movie and she’d watch it on a loop. It was all the little stuff like that building up and overwhelming her.  

“I’ll look for it!”  I told her, “I’ll go to Walmart before we head back to the Quad Cities.” 

I made it my mission.  I wasn’t going to look for it.  I was going to find it!

My mom and I went to Walmart.  We emptied one of those bins that has one million, three-hundred and seventy-two thousand, five-hundred and sixty-three movies in them.  Or so it seemed.  The worker in electronics thought it might be in one of those...

It wasn’t. 

We got lots of stares as we piled up the movies all around the bin.  We must have looked like crazy people.  I was going to find that movie.  Just not at Walmart.  I called Best Buy and Target.  No luck. 
Then I got another idea.  Family Video.  I’ll buy it from them. 

I had to create an account and "rent" the movie.  I asked the cashier how much it was to buy it, and he said I couldn’t buy it.  I told him “Okay, but I’m not bringing it back.  It’s for a young girl in the hospital.”  They’d take care of it he said, and I left with the $1.99 movie. 

VICTORY WAS MINE!

I took the movie back to the hospital.  Dawn was not there.  She made a quick trip back home to grab some things and see her other kids, but I could take it to Eddie. He was in Tori’s room.  I walked to the PICU and stopped at the desk. 

“This is for Tori,” I said.  I was hoping to take the easy way out.

“You can take it back,” she said, “the family is all back there.”

I didn’t want to press the issue, so I reluctantly walked to her room. 

I saw her.  Laying there.  Peaceful.  The only noise was the repetitive sounds of the machines around her and sniffling coming from her dad. Eddie was sitting at her side with tears streaming down his face.  I handed him the movie.  Unable to speak.  I felt as if I had a cement block lodged in my throat.  I couldn’t swallow. 

“Dawn said she likes this movie,” I choked out.

“Thank you,” Eddie whispered, his head hanging down as though he had been defeated.  It was obvious he was utterly exhausted.

I looked back at Tori.  Tubes, lines, machines, medicine.  So much was going on.  She looked so small.  I wanted to hug her.   Instead, I spoke to her in silence.  I told her I was so sorry she had to go through this.  I told her to get better.  And I quickly left. 

I cried until I couldn’t breathe in the bathroom and then I brushed it off and joined my mom and Parker who were waiting in the hallway.  The drive home was quiet.  I no longer felt the joy of my movie victory. 

It was the last time I saw her alive. A few days later, she was gone.

AML.  Acute Myeloid Leukemia.  It had ravished her body.  She was so close to the end of treatment.  What a cruel, cruel reality.  She beat Ewing’s only to get a secondary cancer that she didn’t even get a chance to fight. 

This should have never happened.  She should be here with Parker.  They were going to be childhood cancer advocates.  Together.  Doing things to raise awareness and funding for a cure.  Together. They should be celebrating their end of treatments in 6 months.  TOGETHER. 

I was angry.  And sad.

I tried putting myself in Dawn’s position.  I tried to think of something I could do, something I could say, but nothing was enough.  Nothing could bring back Tori.  I could just be there for her. By her side.

I was also very selfish.  I thought about Parker.  I thought that Dawn’s reality could, in fact, be my own reality too. 

Tori was a fighter.  She was strong.  And yet cancer still took her life.

The reality is cancer can take anyone.  Even Parker.

If the cancer doesn’t, the treatment could.  It’s entirely possible, and likely, that the chemo Tori received caused the AML.  Chemo that is over 30 years old and should be outdated by now.   This is the best we can do for our children?  NO.  I don’t believe that. But we’ll save that for another post. 

I thought I felt fear the day Parker was diagnosed, yet I still had a sense of deniability.  That was gone.  The fear was now palpable.  

Every night for months, I opened his bedroom door and watched for his chest to rise and fall before I could fall back asleep.  Most nights, it still wasn't enough and I wasn’t able to sleep.  That’s what fear of this magnitude does. 

A few days later, I sat at a 24 hour diner in the middle of the night planning a 14 year old’s funeral with her mom whose eyes were swollen and black underneath from crying and lack of sleep.  We talked about music and readings.  She told me stories about the pictures that she would display at the visitation.  One was a picture that Tori drew when she was just 3 or 4 years old.  It was a drawing of a butt and she had written, "My Ass" on it.  We laughed.  WE LAUGHED!  And we cried. I felt like I was dreaming.  I can’t even begin to imagine how Dawn was feeling.  I was taken aback at her strength and her drive.  She was doing it all for Tori, to make her funeral special and honor her memory.  It was the same strength Tori had shown. 

Dawn and I met a couple of times before the visitation, and I thought I was prepared.  I don’t like crying in front of people.   I don’t know why.  There’s nothing to be ashamed of.  But I still tried to tell myself that I wasn’t going to cry.  I was going to be strong. 

Well let me tell you something, that’s crap, and I was wrong.  There’s nothing strong about not crying.  Crying doesn’t show weakness, it shows you’re sad.  And what’s so bad about being sad that a 14 year old died?  It's completely normal.  I wasn’t just sad though, I was devastated. 

As I waited in line at the visitation with Parker and my mom, I couldn’t even look towards Dawn and Eddie without tears filling my eyes.  So I looked in every other direction.  They had a slideshow of pictures playing on a TV.  We watched pictures of her with her siblings flash across the screen.  We watched picture after picture of Tori during treatment.  I watched Parker smile a tiny smile as they showed a picture of him and Tori from Parker’s benefit just the month before.  They had come to show their support. 

We watched her younger sisters twirl in the curtains and run to greet family members and familiar faces.  We watched her brother as he sat on a couch, looking off into the distance. Lost.
We got closer.  I wasn’t ready for this.  I wasn’t ready to face her parents.  I wasn’t ready to see her surrounded by flowers in her casket.

I was next in line to give my condolences to her parents. I quickly realized I had been wrong again.  There was no preparing for this.  The tears flowed. 

I was going to shake her dad’s hand.  Instead, Eddie embraced me in a huge hug.  Words didn’t need to be spoken, but as two cancer parents, I understood.   He was comforting me!  He hugged Parker and gave him words of encouragement as I hugged Dawn. 

“I’m all cried out,” she said.  She looked beaten, exhausted.  I don’t know how she was still standing.
“I’m so sorry,” I said, “I’m so so sorry.” 

I again silently spoke to Tori as we walked passed her, stopping briefly.  I told her I’d watch after her family.  I’d do everything I could to make sure they were okay.  I’d also be her voice.  I’d continue her fight against cancer.  Lastly, I asked her for a favor.  I asked her to watch over Parker.  I told her I knew that it was selfish, but the only angel I wanted for Parker was her.  I knew she'd fight for him. 

The next day we went to her funeral.  As I sat waiting for it to start, I was looking around and saw the picture Tori had drawn of her butt and written "my ass" on.  I laughed a little.  A laugh that was so out of place, but so welcome.  I don’t have words to describe the funeral.  I remember not being able to believe I was really there.  That it was all a dream.  I can’t even begin to imagine how her parents felt. It turns my stomach just thinking about it.  Saddened for their loss doesn’t even begin to express it.

We arrived at the cemetery and watched as they unloaded the casket from the hearse.   Parker joined her friends to lead the casket as an honorary pallbearer.  I watched him hobble on his crutches alongside the casket, and it’s a moment I’ll never, ever forget. 

Parker doesn’t talk much about it.  The strength he showed was amazing though.  13 and facing the reality of the situation proved to be difficult.  Here he was, fighting the same cancer that Tori had.
He never told me entirely what they talked about at his benefit, but I’m glad he got the chance to get to know Tori, even if only a little bit. 

The funeral was beautiful.  It was a time of mourning, but it was also a time of great love.  Dawn and Eddie did a wonderful job honoring Tori’s memory.

Tori, we love and miss you. Thank you for showing Parker what a fighter truly is, and thank you for watching over him.  Telling your story is step 1 to my promise.  My voice for childhood cancer advocacy is only getting started.  I have hope that someday, no child will have to go through what you went through.  Their lives will not be cut short.  We will not fail them like we failed you.

Kaitlyn’s 1st Birthday & Mother’s Day

We got home in the late afternoon on Friday and we quickly put together a 1st Birthday Party for Parker’s sister, Kaitlyn.  We invited family members, ordered pizza, had cake, and opened presents.  It was intimate, and it was perfect.  In the past, I would have created a birthday wonderland.  This was a wonderful reminder that we didn’t need all of that.  Living simply is simply great. 

On Sunday, I ended up staying in my pajamas all day.  It was wonderful.  Chase was here, and of course, Parker and Kaitlyn too.  Kevin gave me an Isabel Bloom flower statue for outside and a very nice card.  I also received a card and gift from Parker.  They were incredibly sweet.  On the outside of the card, Parker wrote, “FOR THE BEST MOM THERE HAS EVER BEEN.”  On the inside of the card and on the necklace, the phrase, “LOVE YOU TO THE MOON AND BACK”.  Parker has a little wooden block in his room with the same phrase on it.  I tell him to look at it as a reminder of how much I love him, and now, I have a reminder of my own.  I was brought to tears when I opened the card and gift.  It was so sweet and thoughtful.  That night when I told Parker goodnight, I also told him thank you for the amazing card and necklace.  I told him it was a great Mother’s Day.  He replied, “Thank you for being a great mom.”  And I went to bed with tears in my eyes.  I am the luckiest mom in the universe.

Today was a win.  

And we needed a win.

My dad came up to the hospital.  He was just as scared as we were.  We waited in the room until the nurse told us they were ready for us.  They took off the splint as we held our breath.  

"It looks really good."

That's all we needed to hear, and we all started crying tears of joy.  Hallelujah!  All the anxiety and fear was gone for the moment!  I was ecstatic.  I smiled a smile so big it almost put Parker’s smile to shame.  Almost.  :)

We know Parker still has a chance of amputation.  But for today, it's a win. 

They put another cast on Parker; he chose bright pink again.  We're going home for a couple of weeks.  The hope is Parker will avoid infection and the skin graft will heal enough to start chemo.  I never thought I would say this, but I am so desperately hoping he is able to start chemo.

So Thursday, May 21st, is yet another big day.  A huge day.  Not only will we take off the cast to see what lies beneath, not only will he be facing a possible amputation yet again, but Parker is also having scans done.  They will tell us if the cancer is indeed gone from his leg, and they will also tell us if it has spread anywhere else in his body.

So for the next couple of weeks I'm going to live in a state of oblivion.  I’m going to do my best not to think about it.  I’m going to do my best to not let my nerves get the best of me.  I’m going to do my best not to stress.  I know that will be impossible the closer the day gets, but I’m going to try to come up with distractions until then.

We're going to celebrate Kaitlyn's 1st birthday and Mother's Day this weekend.  I’m going to take Parker to a few movies this week.  We’re going to celebrate my little cousin’s birthday, my grandma’s birthday, and Kaitlyn’s birthday with my dad’s side of the family next weekend.  I’m hoping to come up with more things to do, so if you have suggestions, feel free to message me!

And please keep Parker in your thoughts and prayers.  Thank you.

5:30 a.m. 

I am woken by the resident doctor. 

“Our plan is to have you come down midday.  We’ll take off the splint.”

I’m barely awake.  The room is freezing, and I’m burrowed in blankets.

“If it looks great, we’ll put a long cast on and send you home.  If it doesn’t look great, we might need to change the plan.”

Wide awake now. 

I know what “change the plan means”.  It means Parker will have an amputation.  I re-read my blog post where I said we’d take it one day at a time and that I was striving to be as strong as Parker, but I fear I was just being stoic.  I know I need to gather all the strength I can, yet again, but right now I’m terrified. 

I’m angry.  I want to hit something.  I want to scream.  I want to throw up.  But most of all, I just want to cry.  I make my way to the bathroom.  Inside the bathroom I can hear Toy Story on the TV, so without a doubt, they can hear me.  I cry as quietly as possible, hoping Parker stays asleep.  I question how I’m going to get through the next couple of days if the news we get isn’t the news we want.  More importantly, I worry about how Parker will handle it.  Dr. Miller said he was optimistic, and I’m trying really hard to be.  But it’s just that, really hard.  The punches don’t seem to get easier.  Not in the slightest.  I return from the bathroom, eyes swollen and nose running.  Good thing it’s dark in the room.

I have one thought repeating in my head. 

Fuck Cancer. 

That’s how I feel right now.

I didn’t wake up excited to start decorating for my daughter’s 1st birthday party.  I didn’t get to shower her in kisses.  I didn’t get to wrap her birthday presents.  This isn’t fair.

No.  I woke up, in fear, scared for my son.  It isn’t fair.

Most of all, it isn’t fair for Parker.  He shouldn’t have to have to go through this.  He’s such a great kid, we’ve proven that.  He doesn’t need to be tested any more.  I just want it all to go away.  I want my energetic 13 year old son back.  I want to see him come flying up to the house riding his bike followed by his friends.  I want to see him jump off his bike, run to the back yard, and start playing soccer.  I want to see him being a normal teenager again.  It isn’t fair.

But I know it’s time.  It’s time to be positive.  I know that no matter what, we’ll get through this.  He’ll get through this.   It’s time to puff out my chest, brush off my shoulders, stand tall, and prepare to walk down to Dr. Miller’s office.  It’s time to reveal what’s under the splint.

(I debated not posting this entry because I try to remain positive, but this is the reality of being a cancer mom.  I'm not always positive and strong.  Sometimes it just sucks, and I get angry.)

A while back, this extremely nice man, Perry, got a hold of me and showered me with compliments about Parker.  He also told me he was praying for us.  That was enough to be thankful for, but he didn’t stop there.  He mentioned that his son, also named Parker, is a football player for the Iowa Hawkeyes!  He saw my Parker was a huge Hawkeye fan and explained that his Parker would love to meet him. 

The first time we planned a visit, we were discharged before he could stop by.  

The second time we hoped to meet him was at the Iowa Hawkeye Spring Game.  During the tour of the locker room, we found Parker Hesse’s #40 jersey and had our Parker take a picture with it.  By the time the players came out to sign autographs, we had already retreated to the press box.  Parker was worn out after the morning activities (I even have a picture of him napping in the press box!).  On top of that, the weather was cold and rainy and I didn’t want him to get sick.  We found the Parker Hesse on the field though and watched him play. 

The third time was a charm.  

We knew Parker would be admitted for either a skin graft or chemo, so Parker Hesse planned on coming to the hospital to see him during his stay.  Unfortunately, Parker needed the skin graft, so I was really hoping that the visit with the other Parker would work out this time.  I wasn’t disappointed. 

I got a message from him asking our room number and which floor we were on.  He said he was bringing some teammates too. 

As I was waiting, a bit more impatient and excited than I care to admit, Parker set down his controller after playing FIFA and said, “I’m bored.” 

“Well, you’re going to have some visitors here soon” I replied. 

He smiled.  I had mentioned yesterday that Parker Hesse was going to try to stop by sometime this week.

“The football player?”  he asked. 

I just returned his smile and said, “Maybe.”

Not even 5 minutes later, I was meeting Parker, Brandon, Sam, and Jake out at the front desk.  I thanked them for coming and walked them to Parker’s room.  They said it was the first time they had been to the hospital, but you couldn’t tell it.  I know some people can get uncomfortable and don’t know what to say, but they acted as though they were right at home.  

They joked with Parker, talked about sports and video games, his chemo and the next steps in his treatment.  Jake is from the Quad Cities, like us, and went to Davenport Assumption.  Parker, Sam, and Brandon are all from Iowa as well.  My Parker is quiet and a bit shy, but he had so much fun listening to their stories.  He really enjoyed their visit!  I couldn’t believe how outstanding they were.  They made me so proud to be an Iowa Hawkeye fan.  They were humble, down to earth, polite, and all around great guys.  They were funny, upbeat, positive, and all had great attitudes.  It was just what we needed during this rough week.

 I’m so thankful Perry reached out to me and that we could meet his son.  I have no doubt he is tremendously proud of his Parker, as are Brandon, Sam, and Jake’s parents.  Not only have they raised such amazingly nice guys, they’re obviously incredibly talented too. 

Parker, Brandon, Sam, and Jake:
Thank you so much for taking the time to come and visit Parker.  It means so much to us that you went out of your way to brighten Parker’s day.  With all that he is going through, I can’t even explain how much your visit meant.  Because of you, he’s gained even more encouragement to keep fighting, and for that, I can’t thank you enough.  We’re now your biggest fans! 

Perry:
Thank you for sharing your son with us.  Upon meeting Parker, it was obvious what a great family he comes from.  He’s such a remarkable young man.  I hope we are able to meet in the future.  Who knows, maybe even at a football game where we can all cheer on your Parker!  You’re in our thoughts and prayers, and we wish you and your family nothing but the best. 

Thanks again, guys!  We are so grateful!  You make us proud to be Hawkeye fans!  GO HAWKS!

Ever since Parker’s diagnosis, I haven’t slept well.  There are days and nights that are better than others.  Oddly, I sleep better in the hospital, even with all the beeping and nurses coming in and out throughout the night.  Maybe it’s because by the time we go back to the hospital I’m so exhausted from keeping busy at home to distract me from what’s going on.  Or maybe it’s because I know there are trained professionals looking after Parker in the hospital.  All I know is that it’s definitely NOT because the “bed” is more comfortable. 

The biggest reason I don’t sleep is because of the nightmares.  Awful, horrible, no good nightmares.  It’s like the thoughts that I don’t allow myself to have during the day, haunt me at night.

I can fall asleep.  It’s just that after having a nightmare, I can’t go back to sleep.  I’ll wake up at 2, 3, or 4a.m. and am up for the rest of the day.  The nightmares have included my daughter also having cancer, losing our home and belongings because of cancer, and the unthinkable happening to Parker.  After my grandma was diagnosed with cancer after Parker’s diagnosis, I had a dream that I was running through a hospital and every door I opened had a loved one behind it dying from cancer.  I woke up sweating and crying, a ball of soaking wet mess.

The night before we went to the hospital to check on Parker’s leg, I had another nightmare.  I dreamt that they took off the cast and underneath was black, rotting skin.  That’s not even the bad part.  There were creepy , crawly critters under it too.  I woke up and vomited.  My stomach was a mess all day.  I had to buy medicine to stop the bile in my stomach from rising into my throat.  I know, not a pretty picture of me or of what was under Parker’s cast.  Sorry!

 I tried to convince myself that though Parker’s leg didn’t look the best at the last visit, somehow it rebounded and was able to heal.  They took off the cast, and very quickly I realized that was not the case.  I didn’t look at it for more than a glance.  I couldn’t.  It wasn’t near as bad as my dream, but it wasn’t good.  I couldn’t even take a picture this time.  Before the surgeon even told us, I knew he was going to be getting a skin graft the next day.

Tears puddled in my eyes.  I tried so hard to conceal them so Parker would not see.  My throat felt like I had swallowed concrete.  I tried my best to pull myself together.  Parker looked at me and smiled.  He told me not to worry and then said, “Come here.  You need a hug.”  I gladly accepted.  Part of me felt guilty for letting him see me that way.  Part of me felt weak.  There Parker was sitting, so strong, smiling.  How?

He said the last surgery was a major surgery, and he got through it.  He feels like he can get through anything now.  I explained that skin grafts were like burns or like when he wrecked his bike and scraped up his knee…only worse.  I didn’t want to scare him, but I wanted to be prepared.  He just said, “Mom, I got this.” 

To show his cheerful mood, he picked a bright pink cast and for a little while, I couldn’t help but to smile too.

We went back home.  Parker went to his room and played video games with his friends, seemingly not having a care in the world.  I sat on the couch, sick to my stomach.  In fact, my stomach hadn’t settled since the last nightmare.  I knew he would come out of surgery just fine.  I surprisingly didn’t have any doubts, but the last surgery was so traumatizing. 

I didn’t sleep much the night before surgery.  Not even enough to allow a nightmare to make its way in to my head.  We got to the hospital, met the surgery staff, and within no time, he was off to surgery again.  My grandparents, mom and I waited.  Thankfully, we didn’t have to wait nearly as long as we did for the last surgery.  Before we knew it, Dr. Miller was telling us that the surgery went well.  He explained that because of the blood clot and sacrificing of Parker’s vein during the last surgery, he was concerned about blood flow to the area of the skin graft though.  He told us that if it didn’t heal well, we were out of options.  Parker is again looking at the possibility of amputation. 

My heart sank.

Blindsided.  I didn’t see that coming.

That’s how cancer works though.  Always messing with you.  Always throwing in a curve ball when you least expect it.  I knew we would face more challenges when he got back on chemo.  But not this.  This was supposed to be behind us. 

I was already anxious to start chemo.  I want to make sure every little, tiny, itty bitty bit of cancer was gone.  Another delay in chemo means more time for that one little cell that might be left behind to multiply and spread.  It’s enough to make me sick all over again. 

Parker woke up, fell asleep, woke up again, fell asleep again.  We talked a little bit.  I asked if he was in pain, thirsty, needed anything.  He just wanted to rest.  He woke up again, sat up, looked at me and said, “Where am I?”  I looked at him, confused, figuring he would be coherent by now.  I said, “In the hospital.”  He started giggling, “Got you!” a huge smile engulfing his face.  I chuckled in response, shaking my head.  Oh, Parker.

The next day I told Parker what Dr. Miller had told us.  I also told him that Dr. Miller was optimistic and that we just wanted to prepare him if it were to happen, but there’s still a good chance that everything will heal properly and be okay.  Parker didn’t cry like I expected.  He told me that he wasn’t worried.  Pain was temporary.  His main concern was that it would be “weird” when he woke up and his leg was not there.  

Tomorrow the splint comes off.  If it’s healing well, they’ll put a cast on and send us home.  We’ll come back 2 weeks from the surgery date to check it again.  If it’s not healing well, we change the plan.  Either way, we will take it one day at a time. 

I made it through yet another surgery.  Most importantly, Parker made it through another surgery.  And together we will make it through the next surgery if it’s what needs to be done. 
 
Parker is a warrior, and I’m going to strive to be as strong as him.  I’ve been teaching him what I’ve learned in life for 13 years, but now I find he’s teaching me some of the most important lessons.  Strength being just one of them.

We also know we have an incredible amount of support, so thank you to those of you who are following, praying, and sending well wishes our way.

Back in my day….

Oh no, I just realized I sounded just like my parents!  Or worse, my grandparents!  Am I really that old?

Back in my day, sigh, TheChive.com was an up and coming website full of funny pictures.  (I had even submitted a family photo in which my brother is licking my uncle's head…don’t ask.)  It was ran by, what I assumed to be, college frat guys because you could also find pictures of hot women scattered all over the site.  :D

It is still a website in which you can go to and see funny pictures, as well as pictures of hot women, but it no longer stops there.  “WHAT STARTED AS A BLOG HAS TURNED INTO A GLOBAL MOVEMENT.”

Under the “WHO WE ARE” section, they describe themselves as such:

“Chivers everywhere are coming together to become the greatest community of sexy creatures, generous misfits and crazy hooligans to come through the net.”

“Whether it’s raising money for charity, putting a smile on a stranger’s face, or simply meeting up to grab a beer, Chive Nation is an online community doing amazing things both online and offline.”

Okay, so what does that have to do with Power for Parker?  Well settle down, and I’ll tell you!

Graham Morris, the owner of Chive on Iowa (the state run chapter for theChive.com), sent me an email.  The email stated that he had been following Parker’s story and was impressed with Parker’s level of courage and his ability to keep a smile on his face.  Because of his bravery and determination, Chive on Iowa would like Parker to receive national recognition.  They also want to help by making Parker one of their honorary beneficiaries and asked if they could dedicate their upcoming event to him! 

But wait, this sounds too good to be true, right?  I’m a bit skeptical…but then he says,

Hey, watch these clips:

https://www.youtube.com/watch?v=ebRi-yquplc
https://www.youtube.com/watch?v=GW2ebqvHTec

Well crap.  Now I’m crying.  Thanks a lot Graham. 

You weren’t lying when you said Chivers are “some of the most caring and hardworking individuals you will ever meet.”

Obviously I know my son is amazing.  However, it’s overwhelming when somebody else acknowledges it.  Now take that overwhelming feeling and multiply it by 117% and that’s how I feel at this moment.  Out of this world! 

So let me tell you about the event in which Parker will be the beneficiary for.  It’s May 2nd at Hazzard County Saloon in Cedar Rapids from 7pm-2am.  That’s right, ya’ll!  They’re going country!  So show up to this amazing event, dedicated to this amazing kid named Parker.  I mean come on…how can you decline after Graham explains, “We know how to throw back on the weekends and have a great time, all in the name of charity.”? 

You can check out the event at:
https://www.facebook.com/events/436045623230613/  (Event Link)

And support the Chive on Iowa here:
https://www.facebook.com/ChiveOnIowa   (Page Link)

If you’re feeling really awesome, see what else you can do here:
http://chivecharities.org/

To Graham and his fellow Chivers:
Thank you from the bottom of our hearts.  Not only for making Parker a beneficiary, but for recognizing his courage and determination.  During dark times like these, it’s people like you who are the rays of sunshine through the clouds.  You make getting through tough times like this possible.  You are why we are able to smile an extra smile.  You give us hope.  You inspire greatness.  You inspire us to be kinder, do more for others, and have fun while doing it!  Thank you, and CHIVE ON!


I still can't believe this is real...

I barely ever use twitter, but the day Parker was down, I was desperate to cheer him up.  So I logged in to twitter and posted the picture of Parker’s Iowa Hawkeyes cast.  I tagged some of his favorite Iowa Players.  One of those players, Pat Angerer, replied. 

Pat Angerer was a linebacker for the Iowa Hawkeyes.  He was drafted by the Indianapolis Colts in the 2nd round of the 2010 NFL Draft.  Now I’m the Colts fan, but Parker watched games with me.  Even though he is a Packers fan, he always rooted for Angerer because of his Bettendorf and Iowa Hawkeye ties.  Parker also loved Angerer's NFL intro in which he says, “Pat Angerer, The United State of Iowa.” 

Pat sent me a message stating that he would like to send something to help cheer up Parker, so I thanked him in advance and quickly gave him our address.  I was so excited for Parker. 

A few days passed, and I was getting ready to head out the door to meet some people and deliver baskets from the raffle.  When I opened the door, I saw a box sitting on my porch from Pat Angerer.  I ran it inside to Parker, and he looked at it in disbelief.  “Pat Angerer?” Parker said, “What?!”

He opened the box and inside was an autographed jersey and a card.  He was stunned.  He opened the card and quietly said, “Wow!”  I don’t think he expected Pat to have written as much as he did. He read the card.  Then read it again.  He didn’t let me read it though.  He just smiled and held the card.  Since I had to go meet some people, I hurried out the door without reading the card, but kept wondering what it said.  It clearly had an impact on Parker.

When I got home, the first thing I did was look for the card.  I read it and it brought tears to my eyes.  Before I tell you what it says, let me tell you about a conversation I had with Parker just the day before.

We were talking about Parker’s appointment on Thursday and how they were going to remove the cast.  He wanted to know if they were going to wrap his leg in an ACE bandage like his other leg had been wrapped in.  I told him no, if he didn’t need the skin graft, he would get another cast until 6 weeks had passed.  “6 weeks?!”  I wasn’t sure if this was an exclamation or question. 

We had previously told him that he would have a cast for 6 weeks, so I didn’t understand why he was concerned.  He said that 6 weeks was not long enough!  I asked him for more clarification.  He explained his small biopsy incision looked “creepy” for longer than 6 weeks.  Regarding the two big incisions from his last surgery, he said, “I don’t want people to have to look at them.”  He was worried about them being “grossed out.”  Parker thought the incisions were cool, and he isn’t grossed out by them.  He’s just worried about what others are going to think. We reminded him what Dr. Miller told him, chicks dig scars, and we told him not to worry what others think. 

But back to Pat’s letter. 

In his letter, Pat defined what a warrior was.  He explained that Parker was the truest form of a warrior.  His words were incredible.  Anybody would feel amazing after reading the words that Pat wrote about Parker. 

I’m not going to write exactly what Pat wrote because I want Parker to have those words for himself, but I am going to quote a small portion of the next section of his letter because I want everybody to know just how amazing Mr. Pat Angerer is.  Grab some tissues.

“A Knight in shining armor is a man who has never had his metal truly tested.”
- You wear those scars with pride.  You were tougher than whatever tried to bring you down.  You inspire me and my family.

The impact that these words had on not only Parker, but on me…..

Wow! - is all I can say.

It’s one thing to hear your mom say, “Don’t worry about what other people think.”  But the way Pat Angerer said it was marvelous and it made a difference.   It was also really great timing.

To Pat:  Thank you.  Thank you for taking the time to write Parker.  Your words of encouragement meant so much to him, and he’s read the card numerous times.  I’ll never forget the shock or the smile on his face when he looked up after seeing the package was from you, “THE Pat Angerer?”  I have no doubt that you're an amazing father after reading the words you wrote.  You're insightful, thoughtful, and intelligent and your kids are lucky to have a role model like you.  I’m still trying to talk him in to sending you a text, but he’s being coy and doesn't want to bother you. 

To those reading this:  Highest bidder gets Pat Angerer’s phone number!  JUST KIDDING, PAT!  I’ve seen you tackle.  I’d rather be on your good side!