FATHER’S DAY 2009

by Tommy Penuel (Kylie’s dad)

When I was asked to share some of my memories of Kylie, I was overwhelmed with the number that came to mind.  The thing is, every moment I spent with her was a special memory.  I was  in constant awe of her attitude.  I don’t think she knew what  a bad day was.  Kylie believed that no matter what, there was always hope.  Everything was possible to Kylie, no matter what the odds were.

Kylie, Brandt and I did everything together.  We hunted, fished, walked in the woods and attended Brandt’s practices and games.   We seemed to get into things that only 3 people the same age (or at least acted the same age) could come up with.   When Kylie was with Brandt and me, there was no such thing as “boy things” and “girl things”.  She was right in the middle of everything with us, and they became “us things”. 

Most people saw Kylie as this little princess, an angel among us.  Brandt and I were fortunate to see another side of her.   She would be the first one to get dirty, whether it be through cleaning out a hunting blind,  holding a fish she just caught or playing in the woods.  She also loved playing a joke on you.   I’m not sure Brandt always appreciated it because he was often on the receiving end of some of her antics.  Kylie could definitely hold her own when it came to hanging with the boys!

Although Kylie would pick at Brandt, she loved him dearly and was protective of her baby brother.  She was his biggest fan at all of his sporting events and would cheer him on.  I have fond memories of the closeness they shared.  It was something I have never seen between siblings. 

 

I also remember the love Kylie shared with June.  A mother-daughter relationship is very special.  June and Kylie’s was the perfect example of this.  Kylie was very much the product of her relationship with June and Brandt. 

We all have heard the expression “Daddy’s Girl”.  Kylie was definitely “my girl”.  We had a bond that was very special and I will treasure that always.  When you think about everything you would want your daughter to be, that’s what Kylie was.  I couldn’t have asked for a sweeter, more caring, fun-loving daughter.  I was truly blessed. 

So dads, as you enjoy your Father’s Day this year, make sure you take time to remember how lucky you are to be a dad.  Ask yourself if you are being the best dad that you can be to your kids; they are counting on you!  Enjoy each and every day with your kids.  Don’t wait for tomorrow to be there for them, be there today. 

Happy Father’s Day!

JUNE’S MOTHER’S DAY (08)

As we quickly approach Mother’s Day 2009, I’ve been reflecting on past Mother’s Days.  Most were very special with the usual treasured cards, which were sometimes accompanied with handmade gifts from my kids.  I was expecting 2008 to be much of the same maybe even more low-key as it would be our first day back home from visiting Angi in San Diego. It turned out that Mother’s Day couldn’t have been further from what I expected.

The kids and I left the Philadelphia airport bright and early on Tuesday, May 6^th.  Aside from being tired and Kylie’s legs bothering her a bit, all was well.  We had a busy schedule that week, with a dolphin visit on Wednesday morning, followed by an afternoon of kayaking in the ocean.  We had a day planned at Sea World, the San Diego Zoo and the Wild Animal Park.  We even threw in a Padres game to round out the week.  We figured we’d relax once our vacation was done.  

Our flight stopped over in Dallas.  It was then to continue on to San Diego.  On our first flight, Kylie mentioned that she couldn’t feel her legs.  I didn’t think anything of it as I figured her legs had fallen asleep, and we’d get up and walk around once we got to Dallas.  After all the other passengers had departed the plane, I tried to help Kylie get up to walk around.  To my surprise, she almost collapsed between the seats of the plane.  As I picked her up and brought her out to the center aisle, I knew something was wrong.  I remember thinking that her legs felt like spaghetti against my body.  As I tried to stand her up, I realized that her legs were like noodles; they had no ability to bear weight.  I quickly sat her in her seat and called her nurse back in Delaware.  Panic was starting to set in.  

I was told that I needed to get off the plane immediately and to go to the nearest children’s hospital. Kylie’s doctors would be calling ahead with her medical history.   As we sat in the terminal waiting for paramedics to take us to the hospital, Kylie leaned over to me and asked, “We’re not going to be going to San Diego, are we?”  I told her it wasn’t looking that way, but we would get there sometime.  As silent tears started to stream down her face, she said, “Brandt’s going to be mad at me, isn’t he?”  I tried to hold back tears as I assured her he would not be angry.  That was Kylie though.  Here she was, not able to move anything below her waist, but she was worried about her brother.  

When we got to the hospital, I remember being in one of the tiniest ER rooms I’ve ever seen with more people in it than seemed physically possible.  There was so much commotion going on in the room that it was hard to imagine there was just one little patient in there.  In the midst of all of the chaos, I remember hearing Kylie barking out orders to the nurses, making sure they were taking care of everything correctly.  I smiled a little, thinking, “Thank you God for giving me a girl that knows how to stick up for herself no matter what the circumstance.”

Outside of the room, I heard some laughing, so I walked out.  Brandt was holding court in the hallway with the paramedics who had brought us.  I have no idea what they were talking about, but Brandt had them in stitches.  Again, I thought, “Thank you God for a son who can cope and move on.”  Despite everything that was going on, it was somewhat comforting to know that my kids were taking care of themselves.  

The rest of the day was spent waiting to get MRIs and then waiting for results.  I can tell you that in 9 years of dealing with cancer, I have never felt more overwhelmed and scared as I was that day.  After receiving the results of the MRI, we learned Kylie had a tumor that was compressing her spinal cord. I called home to let everyone know, and I called Angi to confirm it was serious and we would not be coming to San Diego.  They were some of the most difficult calls I’ve ever made.  

After much discussion over the course of action, we decided on surgery. Kylie went in early the next morning.  All went well, so now it was just a sit and wait game to see if the surgery worked and how soon we could go home.  After a day of trying to entertain Brandt in the hospital, my next objective was to get Brandt on a flight home.  (Don’t get me wrong, he was great, but I didn’t want to test the duration of his “greatness.”)   

After much ado with the airline, someone, many levels up from where I had started, agreed that it would be a good idea to give him a flight home at no additional cost; we just needed to be at the airport in the next 45 minutes.  Thankfully, I had an awesome taxi driver who broke the sound barrier to get us to the airport on time.  He jumped out and waited in one line as I waited in another so that I could hop from one place to the next without waiting again (yes, he got a gigantic tip).  After all the rush, Brandt’s flight was delayed 3 hours.

My nerves were already shot because I had not been able to get in touch with Kylie to tell her I’d be late returning, then Brandt decided he would talk my ear off.  He was excited about flying by himself, but I was STRESSED.  He finally asked if it would be a good idea if he sat quietly for a bit.  (Have I mentioned how smart he is?)  After he was safely on his way, and the other “unaccompanied minor” parents and I had assured each other all would be well, I called my taxi driver to come pick me up.  I love that guy!  

Back at the hospital, I was sufficiently admonished by Kylie about being so late, but I received tons of kisses and “I love you’s,” so it was okay.  

During the week, Angi stayed in close contact to check on Kylie’s progress.  At one point, she offered to come out and stay with us.  I kept telling her “No, I’m fine,” to which she finally replied “Maybe I just want to see your daughter, okay?” 

Her point was taken.   Angi flew out and spent Mother’s Day weekend with us.  We had fun catching up and watching Kylie keep all the nurses straight.  It was nice to have a friend there with me to be able to confess how scared I had been and still was.   Kylie enjoyed having her there as well, and even when she wasn’t part of the conversation, she enjoyed listening to the two of us chat.   She always had a special place in her heart for Angi.

I don’t know why it surprised me so much that Angi flew out to be with us, but I guess it’s because it’s not the typical thing that friends do.  Most would have called to chat and visited when we got home.  It’s that special friend who knows what really matters and how to be there for you.  I’m so glad I have her in my life!

Angi left on Mother’s Day to return to San Diego.  Later in the afternoon, Kylie and I went for a stroll outside.  As she sat in her wheelchair soaking in the sun, she reached over and gently tapped my shoulder.  I looked over at her and she said, “Watch this.” I looked down and saw the toes on her right foot wiggle ever so slightly.  She grinned at me and said, “I’ve been working on it for you all week.  Happy Mother’s Day Mom!”  I thought to myself, “Are you kidding me?!!!  Am I really this lucky to have such a wonderful little girl?” Kylie had never once complained about not being able to move or walk, but she obviously knew I was upset about it, so she had been working on getting movement back for me.  Wow.  How’s that for a Mother’s Day present?!!

We ended up going home the following Wednesday on a special medical flight.  Very uneventful, thankfully, and Kylie was comfortable the whole way home.  In looking back at that time, I’m sure I could argue it was one of the worst times of my life, but then again, I could argue it was one of the best.

 

Happy Mother’s Day!

ANGI’S MOTHER’S DAY (08)

This past year has been an emotional roller coaster. Early last year, Kylie had wanted to come to San Diego to visit “Miss Angi” and see all the places and people that I talked about.  When her doctors told June that treatments weren’t working, June knew she needed to plan the trip.   One of the things Kylie wanted to do on her trip to San Diego was visit the dolphins.  My friend Annaliisa’s husband Drew is a Marine Mammal Trainer who works with dolphins.  At his work, Kylie would be able to have an up-close personal experience with the dolphins not the rushed Sea World kind.
 

Plans for the trip were made and everyone was excited.   In the few short years I’ve lived on the West Coast, my San Diego family has gotten to known my Delaware family through all stories I tell and the pictures all over my house.   Needless to say, all of my San Diego family wanted to spend time with Kyliebug, Brandt and June and be included in their plans.

Kylie’s tumors were growing quickly and the first trip had to be postponed for aggressive treatments to reduce the tumors. Things didn’t look great and everyone was sad and disappointed.   Kylie’s amazing doctors worked hard, and after the treatment they were comfortable that she was stable enough to travel, so flights were booked.  I had just started a new job, but once I shared how important this visit was, I had my vacation time approved. My new work team was equally excited about my visitors.     

Kylie, June and Brandt got on their flight in route to San Diego early on Tuesday morning.   The plan was for me to work a half day and pick them up at the airport at lunch time.  They had to change planes in Dallas, so I was closely monitoring the flight statuses from my desk.  The flight from Dallas to San Diego looked good- on time.   I was like a kid on Christmas Eve, so excited I couldn’t stand it.

Then I get the phone call from June.   June has been a significant source of strength and courage for me for the last 10 years—I remember the day with vivid details when she called to tell me about Kylie’s initial diagnosis and how strong and determined she was while telling me.   I’ve always felt like I had to match her strength in order to be there to support her and Kylie.  This phone call was different. June was freaking out.  They were in route to the Dallas Children’s Hospital.  Kylie was limp from the waist down.   She said she would call back when she knew more.

Anyone who knows me knows that I seldom cry to begin with (except during Free Willy) and certainly never cry at work, but that day there was no stopping the tears.  I felt helpless.  I went outside and called my rock, Tina, who can talk me through any emotional crisis; she was in a meeting.   My sister Donna is normally an emotional wreck during times like this, but I needed her to rise to the moment and help me figure out what to do and what resources we knew in Dallas, and she came through.

June called.  They were waiting on test results.  It appeared that a tumor shifted and was pressing on Kylie’s spine.   The doctors got the results and were optimistic that they could operate and then continue with the trip!  They did the surgery, and we waited to see how recovery would go.

Kylie’s recovery was slow, so Brandt flew back home to Delaware while June and Kylie stayed in Dallas.   I booked a flight to Dallas and spent Mother’s day weekend with two of my favorite people.  It wasn’t the frolicking in the sun time we planned on spending together but the deep, soulful kind of time, the kind when you can feel so much love that your heart hurts.   I am blessed to have spent such a meaningful Mother’s day with one of the best mothers I’ve ever known.

Happy Mother’s Day-enjoy the little things as well as the big things life gives you.