UPDATE! :)

Hello friends. J 

I promised I would update you--just not very often--and now I will keep that promise. J Guess who is six!?  He is also in kindergarten and "hating" it. J  He loved preschool, so I think he will adjust once he has made some friends, but so far? Not his favorite thing.  Right now, his favorite things are chess (he calls it chest), dogs, and NutterButters.

I meant to do a birthday post, like last year, but it has been a crazy few weeks.  Andrew’s birthday was on a Saturday, his MRI and scans (all clear!) were the following Monday, and we left for Europe early Wednesday morning.  Yes, Europe! We went on a cruise.  Two years ago, John suggested it, and we made a down payment realizing that we might not make it if something happened with Andrew.   But! He is doing great. We got to go, and it was amazing.

John’s mom came along, so there were six of us. We visited Dubrovnik and Cavtat in Croatia; Venice, Verona, and Padua in Italy; Piraeus and Athens in Greece; and Izmir and Ephesus in Turkey.  It was all beautiful.  The kids absolutely loved the kid’s program on the cruise ship and begged to attend, so we were able to enjoy some adult, relaxing time.  And there was an Elvis convention on board.  There were men with 70’s sideburns everywhere we went.  Funny.

But back to Andrew.  He is doing well.  I am doing well.  My heart still drops into my gut whenever he complains about anything, but I can cope with that.  He has some residual sinus inflammation and congestion, and perhaps a little dry eye due to the surgery and radiation treatment he received to his eye area.   He regularly wakes up stuffy, or complaining that his eye hurts, or that his eye is blurry (freaks me out each time) but once he rinses his eye with water and blows his nose, he is usually 98% better for the rest of the day.

Andrew's favorite part of Europe may have been these pigeons. :)

He LOVES his friends.   He celebrated his birthday with seven or eight of his favorite people and they played and jumped and tore my house apart for two hours. It was beautiful.      

                                                                                                                                        

I don’t think he loved Europe.  In fact, we may have scarred him for life. J I think it stressed him out.  I think we stressed him out.  Dragging him through the maze of Venice, keeping him up late and traveling for 22 hours straight, eating in restaurants that didn’t serve ketchup… On the day before we went home, he said, “Tomorrow will be the best day of my life!!”  He is happy to be home.

Anyway, I am so grateful every day that he is healthy and happy.  Thanks for all of your prayers!  I hope you are doing well.

Love, Julie

Happy 5th Birthday, Andrew!

When the tumor was discovered, and the nightmare began, and we were spending most nights in shared, noisy hospital rooms, and my two-year-old was restrained, tested and terrorized, and it felt like we had descended into the pits of hell, I posted a Facebook status about how John and I wished we could shelter Andrew from the horror, the way that Roberto Benigni’s character, Guido, attempted to do so for his son in the movie, ‘Life is Beautiful’. 

Unfortunately, we very quickly realized that this would be an impossible task.  Surgery and recovery and more surgery and needles and a protruding port and 4 am ER visits and bi-weekly chemo drips and soft blonde hair falling out in handfuls and immobilizing pain and regular blood transfusions and six weeks of radiation and fevers and mouth sores so painful he would stare at cupcakes but couldn’t  eat them and more needles and a life-threatening bacterial infection and tubes attached to his chest making it impossible for him to run around… were difficult to pretend or laugh away.  And, as much as I wished to put on a good face and be strong for him, Andrew still, frequently, found me in tears.  They were just too difficult to hold back.

But, over time, as I have listened to Andrew share his memories, I have come to realize that perhaps he was sheltered, just not in the way we imagined.   When he describes his experiences in the hospital, he remembers the puzzles we put together, and the games we played, and the cartoons we watched at midnight.  He remembers the exciting flight to Houston, where we lived in a house with an elevator, and played video games all day, and went to amusement parks by the ocean, and both Grandmas lived with us.  He remembers packages filled with hats and gummy worms, and paint-it-yourself trucks from hospital toy closets, and turning out lights to scare doctors, and hiding in cabinets of examination tables.  

He remembers the good stuff!  And, I listen, teary-eyed and incredulous.  

Today, Andrew turns five!!! It has been a treacherous journey, and I am amazed every time I look at him.  He is happy, and energetic, and curious, and playful, and sweet, and picks me flowers whenever he finds them (sorry, neighbors!).  He is social, affectionate, and full of humor.  He makes me laugh. Every day.  He loves his friends, and mazes, and dot-to-dots, and preschool.  He has no doubt that Jesus loves him and lives somewhere in his heart. 

He STILL believes that life is beautiful. 

And I am so grateful.  Happy Birthday, my sweet boy.  I pray, and hope, and beg, and plead that you have many, many, more.

Happy Birthday Mom!

One of my mom's many watercolor paintings.  She recently sold this one.

Yesterday, I sat in my parents’ living room with about 30 other people. My dad was in his familiar position, proudly perched behind a video camera, and seated toward the back.   I sat near him, on their rust-colored couch, leaning into the pillow next to me.  The rest of the audience was seated in rows in front of me--some on my parents’ dining room chairs, and some in the folding chairs my dad had brought in from the garage.  The stage (the opposite end of their living room) was furnished with a baby grand piano, and a table covered with gorgeous flowers.

My mom and her friends have created what they call Sunday Classics Club, where people who enjoy performing classical music get together once a month and take turns playing/singing for each other.  This month, it was my mother’s turn.  My dad, my aunt, and I listened to her sing four lieders (art songs) by Schubert, all in German,  all with complicated melodies, and all of them obviously requiring hours and hours of practice and discipline.  When it was over, my dad turned toward me, impressed and proud, but puzzled, and said, ”Why would anyone want to do that do themselves? Learn all that German and hit all those high staccato notes? So much work!”  But one look in her eyes, and at her smile, answers that question.  She loves it.  She puts her heart and soul into it.

When I was little I remember sitting at her piano and singing hymns with her as she played.  My favorite was “When He Cometh,” because one of its main phrases is “precious jewels”. "Jules" was my occasional nickname, so it felt personal.  I remember sitting on the piano bench next to her, busting it out at the top of my lungs.

About six years ago, after being away for 16 years, John and I moved back to our hometown.    Ever since we returned, my mom and I have done our best to get together for “singing lessons” once a week.  She tries to teach me what she has learned in her many years of voice lessons.  We do sirens and lip trills and arpeggios and scales and sing nonsense phrases.  She teaches me songs in Italian, and German, and rarely, French. I will probably never perform them, and  I can be a very slow learner  (we repeat songs over and over again, sometimes with little progress), but it is always enjoyable.  We take time to chat about life, as needed.

Unfortunately, we haven’t always been able to make these weekly dates.  At first, I had two little boys, and babysitting didn’t always work out.  When I tried to go without a sitter, it was hard to sing, worrying about the chaos and screaming in the other room.  And then I had a third little boy, and a C-section, so we took a break for a while as I adjusted to being the mother of three.  Eventually my mom and I got back into the routine, and relied on preschool, Dora the Explorer, and building blocks to keep the boy/s entertained.

And then cancer.

Instead of our weekly meetings at her piano, we greeted each other in hospital rooms, and doctor’s offices, and in my kitchen as I was leaving to take Andrew to the clinic.  Instead of pouring herself into her art and her music, she poured herself into helping Andrew get well.  She was always there, wherever, and whenever I needed her.  She was there to do whatever would help.  She prayed when I ranted.  She believed when I doubted.  She came when I called.  She sacrificed three weeks of her life to come stay with us in Texas when Andrew went through radiation.  When she would enter the room, I could feel relief in my body, and my pain decreased several degrees.

But, thankfully, we are back to singing again! and have been for the past year.

Yesterday, after the recital I walked around her house and met her friends.  They greeted me and told me they had been praying for my Andrew, and that they receive regular updates from my mother.  As I wandered from one room to another, I noticed once again the familiar prayers, the pictures, and the hopes that she has posted on her refrigerator, and her entry way, and even her bathroom mirrors.  She is  there for me, intervening for my family, even when I am unaware.

Today is her birthday, and I can not let the day pass without telling the world that I am so proud to be her daughter.  She is wise and gracious, talented and artistic, soft hearted and kind.  She loves God and she loves her family.  I am so grateful to her.

Tomorrow is our singing lesson.   I don't read music very well, and I'm still figuring out the German...so teaching me can be a lot of work. :)   But one look in her eyes, and at her smile, and I can tell that she loves the time we spend together.  And so do I.

Happy Birthday Mom.  I love you.

A year clear

Hi Friends,

Just a quick update to let you know that Andrew had an MRI Friday and it was all clear.  We have had one year of clear scans!  There is still a long road ahead, and each MRI is terrifying (so continue to keep us in your prayers).  But we are thankful.  Andrew has been loving preschool and is a very social boy.

Thank you all for your kind words, prayers and comments over the past (almost two years!).  They mean a tremendous amount.

I don't come here often because, honestly, it is painful for me. I am considering starting a new blog, with a distinctly lighter tone. 

Hoping you all are doing well.

Julie :)

Happy 4th Birthday, Andrew!

Today is Andrew's 4th birthday! 

It is hard to believe it has been a year since the last one.   Last year Andrew and I spent the day in the clinic.  He received chemo.  I cried my eyes out.

This past Sunday we celebrated with a party. We rented a jump house and he invited his friends.  He was in charge of a portion of the guest list, and his energy could not be contained.  He raced through the house, from activity to activity, from friend to friend, and loved every minute of it.

As I consider the four years of his life, I realize that while I have cried, and been anxious, and ranted, and screamed, he has lived in joy and peace. Ignorance, as they say, has been his bliss. It has also been a huge blessing.

I often remind myself that I have six little eyes watching my every move.  They watch how I behave in difficult situations, express joy, cope with stress, handle disappointment, show love, and live my day-to-day life.  It is a huge responsibility, and I often wish I did a better job, for their sake.

However, over the last year and half, my eyes have watched Andrew live his life.  I have watched him struggle, and cope, and live each day to the fullest, despite difficult circumstances.  I have learned a lot from him.

Things like:

• Never pass up a puddle.
• Jump! Often. Jump! Everywhere!
• Tackle hard.
• Squeeze tightly.
• Ask to be held when you need it.
• Get down when you're ready.
• Defend your brothers, even when you are the smallest one in the room.
• When it hurts to dance, sway.  When it hurts to sing, mouth the words. But never stop moving to the music.
• Remember your friends' favorite things, and their favorite colors.
• Show concern for others, even when you are in pain yourself.
• Climb trees, even when it scares your mother.
• Push all the buttons, at least once.
• Smile. At everyone.
• Keep on running, even when you are in last place.
• A loud roar will always get a reaction. 
• Look past the smell and the sight of the homeless, and see the face of Jesus.
• As often as you can, and whenever you get the chance, grab two supportive hands (or one that's extra strong), lift up your feet, and fly.

Happy Birthday Andrew.  I love you.

 

Hello out there

I haven't even visited my blog since my last entry!! I haven't written in my journal with a pen. I needed (and probably still need) time to just sit with everything.  I've also been reading books like a maniac and spending time with my boys.

But, I wanted to let you know that Andrew's most recent scans were clean.   I spent the whole day a complete nervous wreck, but everything was okay.  So hooray!!

Here is a recent picture:

We had some family pictures taken, and these were my favorites:

I have missed visiting you all, and I hope you are doing well.  Thank you so much for your prayers.

love,

Julie

One Year Later

April 17.  Last year, on this day, around this time, my Dad, my friend, and I were sitting in the ER with Andrew, waiting for a CT scan.  The nurses and techs tried to convince us that he could manage without medication, but, being a typical two-year-old, Andrew convinced us that he could not.  So they gave him a sedative of some kind, but instead of sedating him, it made him completely uncomfortable in his own skin.  He was screaming, and crying and didn't know whether to hug me or kick me.  We spent that night, and almost every night of the next two weeks in the hospital.

One year. I can hardly write this now without tears. I have been considering this day for almost a week; wondering how to put my thoughts and feelings into words. There is too much...

Today we let Andrew eat all the ice cream he wanted, and counted our blessings.

Today I sat in my room, by myself, with some sad music and a journal.

It has been a long, very long, year. An year of horror, and pain, and suffering, and heartbreak, and anger, and disgust, and grief.

It has been a humbling year; a year of being "patient's mother" and sitting completely vulnerable and fragile in doctors' offices, resenting their very existence in my life, and wanting to throw things, and scream, and cry, and rant, and rage, but feigning smiles instead. 

It has been a year of soul-searching and God-questioning.

But it has also been a year of overcoming. Of noticing blessings and learning to count them. Of trying to accept kindness and help from steadfast friends, sweet nurses, and thoughtful doctors. Of watching my son continue to love life, and play, and run, and jump off couches singing the Star Wars theme song, inspite of everything.  It has been a year where we pulled together as a family and survived.

I have learned to appreciate the gift of a normal day.  The gift of freedom.  The gift of health.  The gift of my children. The gift of life outside the hospital. 


****************
One year ago today, I woke up early and dressed in my workout clothes for the Pat Tillman 4.2 mile run at Arizona State University.  As I ran that morning, I daydreamed about many things...Pat Tillman's sacrifice, Sammy's frequent bloody noses, and a funeral my friend was attending, but Andrew never crossed my mind.

His eye had been looking strange for a few days, but I hadn't been overly worried about it.  I'm not sure how my mind suppressed that.  I'm not sure why I didn't consider possible reasons for its odd appearance. Denial?  too many distractions?  I don't know. 

Later the same day, we went to our friends' house for a belated birthday celebration for the men.  We had a family decathalon competition, where we competed in goofy events like "husbands bench pressing their wives," and the "javelin throw (with pool noodles)."  We had fun. "Team Taylor" won (a very narrow victory) and then we decided to go out to eat.

We chose the Olive Garden, and I sat next to Andrew on the booth side of the table.  I kept looking at his eye, feeling more and more worried.  While everyone was deciding what to eat, I asked my friend, a neurologist, to look at his eye.  "Does it look bulging to you?"  And, after a few seconds of looking, she agreed that it did, and she looked concerned.  John didn't notice anything.  But her husband also thought Andrew's eye looked strange.

Due to previous experiences with doctors, in which I was passed from one specialist to another while waiting weeks between tests, I decided to avoid all of that and go straight to the emergency room.  I forced down a few bites of breadsticks and salad, and left the restaurant.  As we drove, I knew that my life was about to change forever. 

I won't go into all of the horrific details of the night, but at the end of an evening of screaming, unsuccessful IV's, adverse reactions to medications, and finally a CT scan, I found myself standing next to my tearful friend, and my Dad (also a doctor), staring at a black and white picture of the dark circle that threatened my son's life.  John was at home with our two older boys.  I had to make a phone call.

And the nightmare of cranial surgery, and waiting for diagnosis, and shared rooms, and screaming roommates, and cancer, and chemo, and a nurse with a power trip, and a two month trip to Houston, and hell-on-earth began.

We were thankful to find that Andrew's cancer had a standard treatment regimen, and there was a great chance it would work.  But the regimen would be long, excruciating, and dangerous.

For a while, every where I looked, I saw and felt horror.  There were kind words and embraces from family and friends, and lots of meals, and flowers, and offers of babysitting, but the horror of that hospital and the cold you-are-a-number-not-a-name feeling was overwhelming. It felt like there was no escape.

That feeling continued for several dreadful months.  We were in the hospital almost every weekend.  Andrew was in pain almost every weekday.  I'm not sure how I ever slept, and I never made it through a day without tears. 

But over time, many beams of light made it through the heavy curtain.  Thanks to a friend's kind intervention, we made the decision to change hospitals, and nurses, and scenery. We were blessed by fervent prayers, amazing grandparents, a multitude of hats and get-well cards, sufficient finances, fun distractions, and kindness in many forms.  Andrew grew accustomed to the chemo treatments, and began to have only a few bad days each month.

Overall, Andrew endured 14 rounds of chemo (eight months).  Six weeks of radiation. A life-threatening infection. Three weeks of intravenous antibiotics.  And so far, two sets of post-treatment scans.

Today he is running around smiling and seems oblivious to all of it. 

We made it through.

************

Today:  I walk into Andrew's room, and I look around.  A painting he created in the children's hospital playroom is on the wall to my left.  Pictures drawn by his friends, young and old, are above his dresser.  Hats cover his walls.


I sit down in his red rocking chair and consider the future.  I am so terrified that we might be playing a game of tetherball, where we have pushed the ball away, only to be whacked in the head with it later.  I am constantly trying to figure out how to live my life.  I don't want to mope and worry, bracing for a possible blow, unable to enjoy today.  "Gotta let go and enjoy each moment," I chant to myself. It is difficult.

Once again, my thoughts turn to God. After spending a year praying and considering Him, I don't know if  I understand Him any better.   In fact, there is probably more of a wall between us. 

I am anxiously and grievously aware that He does not always intervene in the ways we hope (found this interesting).  While I am very familiar with Romans 6:23, emotionally, I still have a hard time grasping this concept, especially when it relates to children. I still ruminate and ruminate about it.   How can a merciful God watch this happen to anyone?  How does God watch this world spin around, with all of the horror and pain in it?  Why does a loving God allow us all to be tortured?  Despite a lifetime of theology classes, I just can't get my mind around it.

At the same time, I recognize that my life has been blessed by the love and presence of God.   Jesus has been in my life for as long as I can remember, and for that reason, I often take his presence for granted.  Despite my questions and rants, deep inside me is a solid belief that He loves me for who I am, flaws, insecurities, failings and all.   In Jesus, I have had a safe place to go with my rage, and my hate, and my despair, and my incredible anxiety.  I am still terrified and angry.  But I will keep coming to Him with all of it.

I will keep praying that he will cure my son, and never let this nightmare return.

*******

Tonight,  one year later, we spent our evening in the park, and then went out for ice cream.  I will go to sleep in my own bed, and Andrew will go to sleep in his. Tonight, I will thank God for bringing us through this year, and for allowing me to spend this day with my precious family.  I will thank God for my sweet boy, and his continued presence in my life.




(I'm going to take a blogging break now.  I'm not sure for how long, but I need one.  Thank you to all who have been reading and supporting.)