Busy Making Other Plans

Make sure you make it personal.  That was my advice to Krista when she said she wanted to write a blog about our experiences as a family as our son Nate undergoes treatment for leukemia.

So when Krista asked me if I wanted to write a guest blog, I felt compelled to take my own advice.  But what’s personal about me?

Well, I thought, one thing is that I love music.  And it’s one kind of music especially: The old Classic Rock.

I’m a little embarrassed to acknowledge how much time I’ve spent attending the College of Classic Rock.  But the time hasn’t been entirely wasted.  I’ve been exposed to some great works of art and found great insights and inspirations in the music.

It’s funny the connections you make between music and profound events in your life.  I’ll always associate the birth of my first son Sam with Bob Dylan’s song “Forever Young.”  With Nate, it’s John Lennon’s “Beautiful Boy.”

Krista has also come to love that song, one of Lennon’s last, and associate it with Nate so much that she took the title of this blog from it.  The association between Nate and the song is in some ways obvious.  As you can tell from the pictures, he is simply a beautiful boy. (Please take note, Richard Dawkins.)  The nurses are constantly coming into his room just to cuddle with him.

And Lennon’s line that “Life is what happens to you while you’re busy making other plans” has clear relevance to our family.

But there are other parts of that song that resonate with me perhaps even more.  It’s a great tribute to the artistry of the song and of John Lennon that something he wrote when I was just a child could inspire me so deeply when I am, like he was then, a middle-aged father of two sons.

Here’s one part that expresses perfectly what I feel toward Nate right now:

I can hardly wait

To see you come of age

But I guess, we’ll both just have to be patient

‘Cause it’s a long way to go, a hard row to hoe

And, of course, the very beginning of the song:

Close your eyes

Have no fear

The monster’s gone

He’s on the run and your daddy’s here

Another intriguing part to me is that Lennon, famously atheistic, tells his son Sean to pray:

Before you go to sleep

Say a little prayer

Every day in every way

It’s getting better and better

From your lips to God’s ear, Mr. Lennon.  Or, as another icon of Classic Rock mentioned above would put it, “Roll on, John.”

Ted’s over at the hospital now hanging out with Nate.  On typical Saturday mornings, you’d find him sitting at the dining room table with a cup of coffee, several newspapers and Beats on his head listening to the Van or Bruuuuuce.  This morning’s entry is from Ted.  

When I was a kid Harry Belafonte appeared on The Muppets and brought to living rooms across the country “Turn the World Around.”

It has great percussion, fun lyrics and is very upbeat.  It had been years since I heard it.

So how awesome it was today when Sam and his schoolmates — ages six to eighteen — became a powerful force as in unison and accompanied by some fabulous drums they belted out Mr. Belafonte’s spiritual song.

Surrounding their parents, teachers and grandparents the kids danced and swayed in the crowded gym and sang:

Heart is of the river

Body is the mountain

Spirit is the sunlight

Turn the world around

We are of the spirit

Truly of the spirit

Only can the spirit

Turn the World Around

What a great way to kick-start my day.  Even better that my dad and Joan traveled from far away to support Sam.  And that I was able to achieve my goal and make it to this important day at Sam’s school.

An added surprise came later in the day when the hospital’s music therapist popped into Nate’s room as Sam, Dad, Joan and I were visiting.  She comes once a week and always boosts Nate’s spirits.

“Want to play some music?”  she asked.

Before we knew it, the energetic young woman ran to her cart outside Nate’s room and started retrieving instrument after instrument.  And in Room 42 at around three o’clock this afternoon with the sunlight pouring in we had our own world music concert.

Sam on ukulele and Hapi drum; Dad on rainstick; Joan on xylophone; Nate on maracas; and well I had the wave tambourine.

And as it was in the morning, there were plenty of smiles filling the room as we joined each other in song.

Voila!  It’s done.

My jigsaw puzzle is complete.  And so then is my goal for the day.

If you look closely enough you will see one piece is missing and it just happens to be the heart of Texas.  I swear I didn’t plan that.  I have torn this room apart trying to find it but all I’m left with is this song stuck in my head — “The stars at night are big and bright (clap clap clap clap) deep in the heart of Texas.”

The puzzle sat with just its frame for days.  It was slightly too big for the table I have.  I’d grow frustrated as parts I’d complete  would break apart.  With a bump of the table, pieces fell to the floor.  I’d pick them up, reassemble and be back at the same spot.  Nothing motivated me to complete it.  It only started to take shape as Nate began experiencing treatment setbacks.

This past weekend Nate spiked a fever.  That alone isn’t unusual for cancer treatment.  We dealt with it as doctors prescribed antibiotics.  But then Sunday I noticed Nate wasn’t using his right arm and he cried out in pain when I changed his shirt.  After speaking up, the doctors ordered an ultrasound and discovered Nate had a blood clot in his PICC line.

It goes without saying that medicine isn’t perfect and fortunately there are options when issues develop.  But it’s so frustrating.  For Nate, the PICC line allowed the nurses and doctors to administer medications and check his blood daily without having to poke him with needles over and over.  The blood clot then forced the doctors to remove the PICC line on Monday and give Nate a new medication that requires twice daily shots.  They’ve come up with a plan to place a new line tomorrow afternoon.  That should resolve the problem.  But in the meantime, Nate has had to undergo lots of needle sticks to check labs and administer meds.  I’ve always had a hard time watching my kids get shots.  So this puzzle has become therapeutic distraction.  When nurses came in to draw blood, I’d work on the puzzle until they finished what they needed to do.  Then I’d console Nate and sit him in my lap as I filled in the center.  He recovered quickly from the injections, but I needed more time.

It took three days but our puzzle has taken shape and Nate and I have had some good times sitting together.  He also had fun picking up and throwing the pieces on the floor.  We also discovered a new favorite state slogan despite having lived in states with some pretty hard-hitting mottos.  How do you compete with “The First State,” “The Show Me State” or “Live Free Or Die.”

But right now New Mexico wins.  The Land of Enchantment.

Sounds like a great place to visit.  So as soon as we are able, New Mexico here we come!

A good husband knows when his wife is about to lose it and takes immediate action.

So here I am on my couch, a cup of coffee to my left and Sam to my right.  Sam’s having an obnoxious conversation with Siri on the I-pad (he just called her a “poopy head”).  Lucy’s laying in the patch of sun coming through the glass door and she’s keeping watch on the neighborhood.  There’s a load of laundry in the wash, a load in the dryer.  In many ways, it’s like a normal Saturday morning.  And until this moment I didn’t realize how much I needed this.

During the twelve days and eleven nights in the hospital, Nate and I have developed a routine.  There’s nothing wrong with a routine until it renders you afraid to make change.  And that’s what started to happen to me.  By the middle of the week, I  hated to leave the hospital, or even Nate’s room.  Then when I would get away for a few hours, I was so irritable, worried or unsettled.

Right now Nate is in what’s called the “drop and recovery” period of his cancer treatment — a grueling time in which we wait for Nate to become neutropenic and linger for about two weeks before he starts to recover from the effects of chemotherapy.  In laymen’s terms, this means that Nate is losing his neutrophils, a type of white blood cell that helps fight infection.

It’s a normal part of treatment.  But it requires a totally unnatural way of life.  Nate can no longer leave his room, not even for short strolls down the hallway even though we are staying in an isolation unit.

On Thursday night, I left the hospital for awhile to have dinner with Ted and Sam.  I know I was snappy.  I complained about silly things in the house.  I also complained to Ted about being in the hospital, how the noise of the Purel dispenser outside Nate’s room was starting to drive me crazy.

I had been adamant that I was going to stay in the hospital every night except Saturdays even though Ted had repeatedly offered to stay.  On Thursday night as I finished reading Sam a story, Ted again offered and then insisted he stay the whole weekend.  And I’m so glad he did.

I awoke this morning in my own bed and had a great morning with Sam.

In a few minutes, Sam is heading off with a friend for the day.

Ted and Nate are over at the hospital, probably doing what they would be doing if they were home — being together and loving every minute.

And that will allow me to accomplish my goal for today: turn off my “on demand” switch, pick up the remote and watch cheesy Bravo TV shows that I’ve missed these past two weeks.

Ragu Traditional served over thin spaghetti lathered in Kraft parmesan never tasted so good.  Sam even asked for seconds.

It was so good because it was the first home-cooked meal (well, it was cooked at home) that I was able to make for my family in more than a week.

This was possible because a good friend came to the hospital this evening and sat with Nate so I could have a break.  What a gift to spend time with Ted and Sam in our home.  We’ve been able to do this a few times because friends voluntereed to be with Nate so that we can take care of important things that we’re unable to do here at the hospital.  Things like reading with Sam before he goes to bed.

We’ve experienced so many acts of compassion and kindness since Nate’s diagnosis and hospitalization for leukemia.  I know that I speak for Ted as well when I say how deeply moved we have been by this outpouring of love and support.

The goal for day eight is to thank you for all that you are doing for my family.  We couldn’t have made it through our first week without you.

Friends who have known us through every stage of our lives have reached out.  You have planned meal trains for us, coordinated a schedule to watch Nate so that I can spend some time away from the hospital, sat with me at the hospital and given us hugs.

You have brought me deodorant when I ran out (the nurses thank you as much as I do for this one!).

You have secretly decorated our doorstep with beautiful mums and pumpkins.

You have prayed for us.

You have written.  You have called.  You have posted on Facebook.

You have thought of us.

All of these acts mean so very much.

Asking for help isn’t easy for me but you’ve made me feel comfortable and allowed me to acknowledge I can’t do this alone.

Last May our family and friends formed Team Nate the Great for the Buddy Walk and what a team we’ve become.

So THANK YOU Team Nate the Great.  And for our newest members: welcome!

Because you asked Dad, I did accomplish one goal each on Days Four, Six and Seven by going to Target, vacuuming my house and riding bikes with Sam.  It’s the little things … 

It is better to light a candle than to curse the darkness so says an ancient proverb.

Weary, angry, sad, you name it, I wouldn’t have had the stamina to light any candle this morning.  I’m not there yet.  But, I wouldn’t have had the energy to curse, either.

So how touched I was when representatives of the Candlelighters Childhood Cancer Foundation of Delaware today lit candles for my family in the form of a giant, mylar monkey balloon and a circle of new friends.  This organization has become my goal today — to learn more about these kind people.

Just before lunchtime, I looked outside of our doorway to see a massive amount of balloons floating by.  Two people came to my door and asked if we’d like a monkey, Superman or Sponge Bob.  As soon as we saw it, Nate and I knew we had to have that monkey.  After handing me the balloon, they told me to have a good day and off they went.  Who were they?

That monkey immediately brought Nate and I some happiness.  How we laughed and started saying “ooh ooh.”

A few minutes later, our unit’s social worker invited me to a lunch with other parents of children with cancer.  The meal also was sponsored by the Candlelighters.  Getting out of our room for an hour to talk to peers is a power of its own.

The pair with the balloons came so quickly I didn’t have a chance to meet them — or thank them.  But I now know that the  Candlelighters Childhood Cancer Foundation of Delaware is run by volunteers and comprised of local parents of children with cancer.  They have walked in my shoes.  The organization’s mission is to educate, support, serve and advocate for children with cancer, their families, survivors of childhood cancer and the professionals who care for them.

Nationally, parents created the Candlelighters Childhood Cancer Foundation (now known as the American Childhood Cancer Organization) at a time when they were encouraged not to talk about their child’s cancer.  Per Wikipedia, the organization’s original name was derived from the proverb, “It is better to light a candle than to curse the darkness.”

Today in Delaware, mission accomplished for the Candlelighters.

It’s so quiet, finally, after a long day.  Time for my goal: to start this puzzle.

I LOVE jigsaw puzzles and I LOVE license plates.  What could be better but a combo of the two!

Back in the day when I had dozens of daily goals, this puzzle was on the list.  I bought it a year ago while on maternity leave thinking (or not as the case is!) what fun it would be.  Because of course mothers of newborns have time to put 1,000 pieces of cardboard together to reveal a lovely display of license plates from across our nation.

But hey, here it is.  Finally open and ready to assemble.

I’m thinking about my big sister.  Katie was the master of jigsaw puzzle solving in my family.  Doesn’t every family have one?  I think Dad even built her a special board that could travel throughout the house without disturbing the pieces all organized in little piles by color or theme.  Katie always let me help her and she taught me the Cardinal Rule of the jigsaw puzzle: build the frame first.  If you had a frame, the rest just fell into place.

So tonight, I’ll start on the frame.

Resilience is a mighty power that children possess.

No parent wants his or her child to go through trauma, stress, disappointment or pain.  But as we all know some degree of that is inevitable.  As much as we want to jump in and take it for our kids, there are some things we just can’t do.  How these little ones smile, bounce back and then move forward should be a motivating force for us adults as we confront our own challenges and heartache.

My goal today is to recall the many examples of resilience my boys have given me.  I’m hopeful these images will give me strength as Nate begins a four-day, continuous dose of chemotherapy.

Here’s Nate not even an hour after doctors yesterday surgically placed a PICC line in his arm, performed a lumbar puncture into his spinal canal and then dosed that spinal canal with chemotherapy.  As he was being wheeled back from the OR, Ted and I crowded around his crib.  He was crying, disoriented from the anesthesia.  We cuddled him and fed him, expecting that he’d want to be in our arms for the rest of the afternoon.  But as soon as his tummy was full, Nate was ready to get going.  He wiggled and squirmed.  I laid him in his crib.  He flipped over, sat up and got to work playing the toy xylophone.

Big Brother Sam yesterday faced his own struggle.  As we hustled to leave for the day, Sam refused to get into Ted’s car, saying he preferred “mommy’s car.”  We were running late and needed first to take Sam to school so as to arrive at the hospital on time.

It should have been obvious to me that the issue for Sam wasn’t mommy’s vs. daddy’s car.  The ride to school signified the start of Sam’s difficult journey with Nate’s absence from home.  So there he was refusing to budge from the cherry tree in the front yard.  I would like to tell you I was the perfect mom in that moment —  that I immediately picked up on Sam’s cues.  But in the midst of my own turmoil, I became irritated and told Sam it didn’t matter which car we rode in and that he just needed to get moving.  That didn’t work.  Instead he crossed his arms and stood silently.  I then threatened to take one of his toys away and put it on top of the refrigerator — the threat that usually does the trick for getting a stubborn child to move.  “I don’t care,” he said.

Then it hit me and at that moment, I could care less if we were late.  I hugged him and told him we’d be okay.  After some more prodding, Sam got into the car.  Thanks to encouragement from one of his favorite teachers, Sam joined his classmates when we arrived at school.  I was so happy to hear from a friend later in the morning that as soon as I left Sam did great.  When I picked him up at the end of the day I brought him to the hospital to visit Nate.  He bounded out of the car and told me to hurry up; he had to say “hi” to Nate and check out the TV in his baby brother’s room.  That’s Sam: the king of resilience.

Like many parents, I often worry about the impact challenging times can have on children.  I did some digging this morning on resilience and was happy to find a good resource via the APA (American Psychological Association) and its Resilience Guide for Parents & Teachers.  Per the APA, “building resilience – the ability to adapt well to adversity, trauma, tragedy, threats or even significant sources of stress — can help our children manage stress and feelings of anxiety and uncertainty.”  It’s interesting reading and I especially appreciate the 10 tips for building resilience in children and teens.  Right now our family is facing the very cruel challenge of cancer, but I know that one day we will return to those typical issues that children face.  When that day comes these tips will be just as handy as they are today.

In the coming months, I can have one goal per day. I’ll explain later where this comes from and why it is necessary.

Today brings my most difficult: to walk Nate through the hospital doors to begin treatment for AML leukemia.

I have dreaded this since the day we were told nearly a month ago that Nate has leukemia and will need to be admitted for months for intense chemotherapy.

I know this is necessary. I know that Nate needs this treatment in order to save his life.  But I feel like I am betraying him. He has no idea what is to come.  He is only 1.  Nate should be able to continue to enjoy being in his home, waking each day in his own crib, to cuddles with his parents and watching his big brother Sam dance and laugh around his crib.  And that is just the morning routine.

During these past few weeks — it is these moments — moments that are the most routine in our day that have become the most precious as I know they are fleeting.  I have hope that they will return.  But we are entering the scariest time of our lives.  And all of this begins when we walk through those hospital doors today.

I’ve done it dozens of times for my kids’ various appointments and during my past life as a prosecutor.  Just walk right up to the sliding doors and go inside, into the colorful walls of the children’s hospital.  But on this day I’m terrified.

I had hoped for rain today as that would make it easier.  Just rush in with Nate in my arms so he wouldn’t get wet.

But today is one of those perfect fall days: designed for stroller walks around the neighborhood.

Will I have to linger outside so Nate can get some fresh air? Will that only make it worse as I become distracted by the nearby playground and sidewalks? Will I have to turn him over to Ted or a staff member because I simply won’t be able to do it?

This is my terrible goal today: to walk Nate into the hospital.