You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Friday, March 16, 2018

A Letter to the Mom Who Watched Me Bring My Baby Home...

Today is the eighth anniversary of my micro-preemie son’s homecoming.  Eight years ago we walked out of the hospital and into our home.  It marked the completion of one of the hardest times in our lives.  It was the beginning of a journey of love and hope and appreciation for all that we never dared to dream he would be.  We celebrate this day every year, knowing we’ve been given a blessing that not all NICU parents get to experience.  We honor those who helped save his life by sending cards of thanks and encouragement.  And yet today, eight years later, I find myself thinking of you…the mom who watched me bring my baby home.  

You were standing in the hallway outside the NICU door.  I’d never seen you before, but then again, being in an 88 bed NICU distributed among many rooms, we rarely saw other parents.  You were standing with your husband (or boyfriend) and when you saw us, carrying our six pound, six-month-old son in his carseat, you burst into tears and buried your face in his chest.  He instinctively moved himself between you and us, physically trying to shield you from your pain.  It was subtle and obvious all at the same time.  

You weren’t much taller than me.  You had dark hair.  You were maybe a little younger than me.  And in that split second, our moment of joy brought you a moment of pain.  I should have hugged you.  I still don’t know why I didn’t.  I wish, with all my heart, that I had.  I think I was fairly certain that if I took one more step toward that NICU, some doctor would come and tell me that there had been a mistake, that he couldn’t go home, that we would have to leave him as we had done a hundred times before.  I think I meant to smile at you.  I can’t remember if I did.  But I want you to know that I saw you.  

Eight years later, I wish I had taken a moment to acknowledge your pain.  Eight years later, I wish I had taken a moment to hear your story.  Eight years later, I wish I had taken a moment to tell you ours…if anything, to give you hope.  You see, our son was/is a micro-preemie.  Born at 25 weeks gestation, weighing 1 lb. 13 oz.  We transferred to Los Angeles from our local hospital, four hours away, when he needed emergency surgery.  He had been plagued with “preemie problems” and our NICU stay had been anything but predictable.  We’d been through two surgeries, countless close calls, and had been told more than once that he might not survive.  He struggled to learn to eat and to breathe and to survive.  But he did survive.  And now he thrives.  

In naivety, I remember hoping, in that moment, that your baby was a “grower-feeder.”  The reality was, of course, there were no “grower-feeders” at that hospital.  All the babies there were in life threatening situations, including yours.  I wish I had told you that this agonizing moment for you was the first time he’d been in his carseat.  That this moment was his first time wearing pants.  That this moment was our first time seeing him without a wire or tube attached.  I wish I had told you that while no part of this journey had been easy, there had been many moments of immense joy and excitement.  I wish I had taken the time to tell you what someone had taken the time to tell me…that a NICU mama’s job, your only job, was to hope for your baby. 

I’ve often wondered about your baby.  Were they a micro-preemie too?  Were they a boy or a girl?  Had you known you’d end up in the NICU or was all of this, like for us, a complete surprise?  I’ve often thought about you too.  Do you remember that moment?  Did you wipe away those tears, walk back into that NICU, and hope (maybe against some staggering odds) that this would be you someday?  Did you get to bring your baby home?

So, if you were the mom standing by the door of room 303, on 3 West, by the Giraffe Elevator, at Children’s Hospital Los Angeles, on Tuesday, March 16, 2010 around 3:30pm…I want you to know that I saw you.  I saw you and your pain.  I saw you and a small glimpse of the journey you were on.  And I hope, I hope, I hope, that you are celebrating homecoming anniversaries too.  

With Hope,

Sara Bollinger

Friday, April 1, 2016

One Year Later...

Dear Family and Friends,

Just this week, we passed the anniversary of Zac’s first surgery.  Looking from where we were a year ago to where we are now…well it’s been an amazing and exhausting 12 months.  

Zac’s second follow-up MRI showed tumor shrinkage!  A whole 2cm, throughout the main tumor and the four drop tumors.  This is great news!  His doctor seemed pleased, although he said the rate of shrinkage really doesn’t matter.  The tumor should continue to shrink over years, but will probably never completely disappear.  Some remaining, inactive, tumor tissue will be there for Zac’s lifetime, thus resulting in the need for yearly MRIs for the rest of his life.  However, because he is still so close to the initial treatment, he will have two more MRIs just six months apart this next year before he’s able to switch to the longer interval. In these past 12 months, Zac’s had 12 MRIs!  Just imagine how high that number will be by the end of his lifetime.  

For those of you who haven’t seen Zac, he looks very different from a year ago.  He’s lost 68 pounds!!!  And he’s done so in a healthy and sustaining way.  He’s working out at least four days a week, has given up soda, passes on desserts most nights, and now has a normal blood pressure.  We bought him a new wardrobe about four months ago, as none of his old clothes fit, only to find now that his new clothes don’t fit, and he’s in need of a new wardrobe again!  What a problem to have.  He is also able to do more with the kids, including wrestling, tickle fights, and rides on his shoulders.  It is easy to see the boys are enjoying having their dad happier and healthier.  Zac’s pain is virtually non-existent.  He does get sore after working in certain positions and he also has to be careful with jumping, but he has not experienced any of the pain that crippled him before the surgery.  The numbness, which was the symptom which ultimately got him the MRI that lead to diagnosis, is almost gone.  He still experiences intermittent numbness to three toes in his left foot.  However, the neurosurgeon at UCLA said he was surprised Zac got any feeling back at all, so we are very thankful.  Zac is strong, has no activity restrictions, and is kicking butt back at work.  I tell him every day how proud I am of his recovery.  He has worked incredibly hard! 

As the stress of the past 12 months dissipates, I sometimes find myself in a funk.  The same thing happened after Everett came home and I think much of that is finally being able to feel everything I couldn’t while we were actually in crisis.  Survival mode has an amazing way of protecting your mind so you can keep putting one foot in front of the other.  As time goes on, and you learn to feel safe again, your mind opens up with emotions you thought were gone.  The process of acknowledging those wounds is exhausting and overwhelming.  Zac too has been feeling some anxiety and has had a few panic attacks triggered by things that made him remember being in the hospital.  These attacks are becoming fewer but they always leave him feeling vulnerable.  As time passes, I know things will improve for both of us.  Time doesn’t heal all wounds but it sure makes them bleed a lot less. 

I was reminded today of how loving people are and I want to acknowledge how amazing you, our family and friends, are too!  Looking back at the past 12 months (or heck, the past six years), I’m continually humbled by the love you carry for our family.  What we have ever done to deserve such love, I have no idea, but I’m thankful for each and every one of you.  For every challenge we’ve had, we’ve been immeasurably blessed with amazing people who have helped us shoulder the burden.  I only hope we can continue to pay forward the kindnesses we’ve received.  I hope our family can be an example that the heart of life is always good, and that the hearts of people are good too.  

In closing, you might know that six weeks ago we lost our dog, Jack, very suddenly and traumatically to cancer.  On a day when I was feeling particularly angry about his death, Zac’s dad came over to tell me he had had an epiphany about Jack’s passing.  He said that he felt that Jack was gone because his job of holding us together through the hard stuff was over.  He strongly felt that our lives would settle and become calmer.  He believed that Jack was put in our family to help us through the trials of the past six years, and that we have easier days ahead.  I choose to believe this as well.  I choose to believe in happier days and sweet memories to be made.  I choose to believe in the love that holds my family together and in the friends that hold our family up.  Life won’t always be easy (whoever said that anyway?), but I know it will be meaningful and overflowing with love!!!


The Bollinger Family

Friday, February 5, 2016

Reece Turns Two...

A letter to my son on his second birthday…

Dearest Reece,

Today you turn two…and finally your age will match your attitude.  It already seems so long ago that you outgrew all those parts of babyhood and began barreling, full-force, into becoming a toddler.  And what a toddler you are! 

Not long after you turned one, you earned your nickname “the hurricane.”  It was coined during the two weeks that Grandpa watched you while Daddy and I were down at the hospital.  It’s a perfect description of who and what you are.  You can enter a room, and destroy a room, in 30 seconds flat.  You bring chaos and energy wherever you go.  You are ferociously independent, which earned you a broken arm at 18 months old.  You were attempting to climb the big kid stairs at the playground when you slipped and fell right through my hands and landed on your right side.  Your cast was blue.  The first night, you stuffed black beans into it.  Like I said, you are ferociously independent.  

You are so inquisitive and so smart.  Most of the time, you have a look of concentration on your face.  You are always watching, trying, babbling, and reacting to the world around you.  You rarely ask for help.  If you do, it’s only because you’ve tried it 10 times over by yourself.  You are so much like your daddy that it makes me laugh.  You are talking in four word sentences and most of the time, we know exactly what you are talking about.  If there’s ever any confusion, you are sure to let us know we are not getting it right.  You walked at 13 months and began climbing out of your crib at 20 months.  Luckily for us, after a fall off the other side, you’ve decided it would be better to stay within the bars (for now).  You scrub yourself in the bathtub, use utensils appropriately, insist on brushing your own teeth, and are becoming increasingly interested in potty training.  

You are adorable to look at.  You have these looks of mischief, contentment, goofiness, anger, pout…the list of your many faces goes on and on.  We are never in any doubt as to your mood and you are very good at letting us know how you are feeling.  You test the limits often.  It usually takes two, three…eighteen “nos” to get you to stop something you shouldn’t be doing.  Temper tantrums occur everyday.  You are also so loving.  When Daddy and I get home from work, you run at us screaming our names.  Then we scoop you up and we get a big hug and an opened-mouthed kiss.  You love your blanket and lovies, cradling them while you sleep.  You still have a pacifier.  You love to meet strangers on your own terms, often waving to people in the grocery store and saying “hi” to them  However, if a stranger approaches you, you become quite shy and reserved.

You continue to adore your brother.  You follow him everywhere and often steal his toys when he is not looking.  He plays with you well, until the sharing gets tiresome, and the two of you start swiping and hitting and crying at each other.  Daddy and I feel like referees between you two at times, but I love to see your love for him.  You mimic everything he does.  You two push each other to discover new things and develop new skills.  It’s a wonderfully dynamic friendship that I hope lasts your lifetime.  

I feel like if I close my eyes I will wake to find you three years old and beyond.  You are growing up so fast!  While it does make me sad to see my baby disappearing, I’m also so excited to see the boy you are going to become.  You are anything other than predictable and I know you will have many surprises for us as you become our toddler boy.  We love you so intensely and so completely.  Happy 2nd birthday Hurricane!


Mama and Daddy

Friday, November 27, 2015

Our Fight With Prematurity...

Dear Family and Friends,

Our fight with prematurity will never truly be over.  Fighting for a micro preemie doesn’t end when they arrive home from the NICU, or when the reach age two (when age adjustments end), or when they graduate out of interventional services.  The fight…our fight, has never stopped.  Our opponent just changes tactics.  Six years later, we continue to feel the effects of prematurity in our every day lives.  While the struggles are no longer life and death, there are struggles all the same as our miracle boy continues to grow up.  

We are SO thankful that he is growing up!  We are so thankful that he is here, that he is functional, that he is bright and loving and everything (and more) than we ever dared to dream he would be.  But we walk a fine line between typical and delayed, as Everett continuously bounces from one side to the other.  In an attempt to help Everett achieve more typical skills, we have had him in private occupational therapy for over a year.  Very early on, his therapist diagnosed him with Sensory Processing Disorder, which is a dis-regulation in how the body interacts with its environment.  For Everett, it really made sense.  We pushed the therapy, hoping it would be an answer to so many of his struggles.  Then, in February, Everett began displaying what appeared to be seizure-like activity.  While watching TV or riding in cars, his head would jerk, his mouth would clench, and he would go to a place of complete inattention.  It scared me.  Shortly after this began, Zac was diagnosed and our world was spinning so fast that it, and occupational therapy, got pushed to the side while we fought Zac’s fight.  In June, my parents brought it back to my attention as they were scared too.  I recorded a few episodes, which by that time were increasing in frequency, and took it to our pediatrician.  We were referred to a pediatric neurologist.  We made two trips to CHLA for seizure testing and a neurological consult.  Thankfully, Everett was not experiencing seizures.  These episodes were involuntary movements, called tics, which can be normal for his age group.  But the neurologist was concerned about Everett’s developmental delays (he remains two years behind in fine and gross motor skills).  

The neurologist diagnosed him with developmental dyspraxia, a delay in the communication from the brain to the fine motor muscles.  In the testing, Everett was unable to make the “ok” sign with his hands, as he couldn’t control his muscles enough to do it.  It made me tear up to watch him frustrate, as his mind knew what to do, but his body just wasn’t listening.  He is so bright…everyone has told us that…but he is stuck in this body that doesn’t work as well as it should.  I can’t imagine what he feels like.  The neurologist also said he had several indicators for ADD/ADHD, and she felt he should be tested.  We completed this testing a few weeks ago.  Everett does have ADHD.  Contrary to what most people think about ADHD, it isn't inattention to people or to the environment.  It is hyper-attention to everything in the environment and an inability to filter out what is important vs what isn’t important.  To put it simply, a child with ADHD hears the white noise of a fan and categorizes it with equal importance to that of his teacher.  Therefore, his brain takes in everything constantly.  This constant barrage of stimuli makes distraction easy as the child attempts to respond to all the stimuli equally.  Again, I can’t imagine what he feels like.

So where do we go from here?  Well, we are slowly figuring that out together.  We attempted to get Everett an IEP (and access to therapy interventions) at school.  We were told that because he is “cognitively intact,” meaning he is learning at the same rate as his peers, that his physical delays aren’t of concern.  It doesn’t matter that at six years old, he still can’t run properly.  We were told that he literally has to fail before the school can help him.  We were successful in getting a 504, which is an accommodation plan for his unique needs.  This allows him to use a wobble stool in class instead of a chair, allows him frequent movement breaks so he can get his wiggles out, offers him a weighted vest that gives him sensory input to calm his body.  Having a 504 also puts him on the radar of the the occupational, speech therapist, psychologist, and nurse so they are watching his progress.  He also has an incredible teacher who is happy to do many therapy exercises with him in class.  

There is such a stigma associated with ADD/ADHD.  Everyone has an opinion on the validity of the diagnosis and how best to treat it.  I know for us, this diagnosis has been an exercise in putting aside our own preconceived notions as we look how best to represent Everett’s needs.  As his parents, we are not ashamed.  It is our job to protect his self esteem and set the example that his ADHD will make him uniquely gifted.  We continue to research interventions to help him overcome his delays.   We continue to look at homeopathic and pharmacologic methods to help him settle his body.  We continue to make hard decisions with our best intentions.  We continue to be thankful for his life and the amazing things that he has accomplished.  We continue to push him to be the best person he can be.  We continue to fight every single day against his premature birth.  Prematurity never ends.  The fight rages on.  And we will never give up the fight because his life is worth everything!


The Bollinger Family  

Sunday, October 11, 2015

A letter to my son on his sixth birthday...

Dearest Everett, 

When I think back on this past year, especially the past six months, I don’t know how Daddy and I could have made it through without you.  This year most especially, you have been our touchstone of normalcy, our endless fountain of love, our constant source of comic relief, and the one person we could count on to be flexible with the endless changes in our lives.  You have gladly stolen our focus from other parts of our lives and helped us to remember that with a little laughter and a lot of hugs, we can conquer anything.  

You’ve turned into quite the silly boy.  You really enjoy making people laugh and you are always checking to see if people are smiling.  You adore being around other people and thrive on interaction with both peers and adults.  Each night before bed, you ask me, “What are we doing tomorrow?”  If I ever say that we have no plans, you are sure to prod me into making some, begging for playdates with a number of your friends.  You love anyone and everyone.  You are quick to make friends.  In fact, everyone you meet is your new “best friend.”  And you really mean it.  In that moment, the other person is your complete focus and you strive to make them happy.  

At times your silliness has been a challenge, when you’d rather goof off than do do homework or sit properly in class.  You are the class clown, the one who takes everything a step further on the giggle scale.  We are trying to teach you that there is a time and place for humor and that it isn’t funny to act less smart just to get a laugh.  You have endless energy.  You are in constant motion.  You struggle to control your body and, at times, it really shows.  You participated in a year of occupational therapy aimed at helping you learn to move your body and process sensory input.  We bought you a trampoline, a hammock, and made you a tire swing to help you here at home.  You worked very hard and we saw some improvement.  But you continue to struggle.  We have had some testing done and still have some more testing to do.  But no matter what the results, Daddy and I will always fight and advocate for what you need.  We are committed to doing whatever it takes to make your life as successful as it can be.  And whatever dreams you might have, Daddy and I will help you achieve them.  You are capable of anything you set your mind to and we will never let you forget that.  

You are an amazing big brother, with a little brother who looks up to you so, so much.  Reece follows you constantly.  While you’ve found it annoying, you’ve also been so tolerant and kind and loving.  Each night, you kiss him before bed and tell him, “I love you brother!”  You have your spats as siblings do but you really do seem to understand that he is watching you, looking to your example every day.  And you seem to take that responsibility very seriously.  

You’ve suddenly decided you want to be more independent and are, at times, pushing us away.  You are finding the courage to try new things that in the past you’d never even considered.  You are also becoming more assertive.  We’ve even had a few arguments because of your attitude.  You like to ask “but WHY?” when you don’t get your way.  While this can be challenging for us as your parents, I love seeing you find confidence in yourself.  I also love to see you questioning your world.  You’ve become more brave (if that’s even possible).  The things that used to scare you (like nail cutting, haircuts, teeth brushing) you’ve begun to embrace as your own responsibility.  In that, we’ve found it easier for us to accomplish the tasks together.  You like to take on your fears, owning them physically, so that you can overcome them.  We couldn’t be prouder of you.  

When you were born, you defied the odds by being the baby who lived.  Now at six, you continue to defy the odds by being the boy who thrives.  Your life is an inspiration.  Your attitude is infectious.  We are so privileged to be your parents.  Our hearts beat with love for you every moment of every day.  Happy 6th birthday, Everett Zachary Bollinger.  


Mama and Daddy

Monday, August 31, 2015

Weathering the Storm...

Dear Family and Friends,

I am well overdue for writing an update on our family.  You’ve all been so kind and thoughtful inquiring about how Zac is doing.  So let me tell you, he’s doing AMAZING!  He returned to work four weeks ago, full time, with just a few physical restrictions.  He’s been rocking it since the moment he stepped back into that dealership!  I couldn’t be more proud!!!  

His back pain is all but gone.  While he still has “soreness” it is nothing compared to the debilitating pain he was experiencing before the surgery.  He has also found himself able to work more quickly and efficiently.  Neither of us had noticed, since his condition had been such a gradual decline over such a long period, that he was having difficulty keeping his stamina up at work.  That was reflected in the number of hours he was billing.  Now that he’s virtually pain-free, he’s returned to billing hour amounts that he hasn’t reached in two years.  Woohoo!  He is also more content at work than he’s been in quite some time.  I think a huge part of that is that for the past four years he’s been going to work every day knowing that his pain would be almost unbearable.  I can’t imagine how much stress that put him under.  But he still did it, for our family.  I have so much respect for how much he suffered to support us.  He’s still turning down those jobs that require too much lifting or bending or odd positioning that he knows will fatigue his back.  The dealership has been very accommodating in that aspect.  They are thrilled to have him back.

Zac has also become so motivated to maintain his overall health.  We are making big changes in our diet and our environment to optimize the health of our family.  We aren’t going nuts, but we did remove all the soda from our house.  We are eating planned, balanced (organic when possible) meals with more veggies than I’ve ever cooked.  We’ve also started removing chemicals from our environment in an attempt to live a cleaner life.  Zac’s been faithfully working out five days per week.  He has lost 35 pounds and looks fantastic!  He has motivated me as well, so I’ve been exercising in the morning before work.  Overall, we both have more energy with these new changes.

Coming out of the storm, I am beginning to see the benefits from this huge challenge.  Zac is taking his health seriously in a way that I’ve begged him to for years.  While our marriage was strained after his hospitalization, I can now see how much we’ve both learned from the reversal of roles we experienced while he healed.  I now understand how much stress is involved in being the primary source of income and how difficult it is to change gears from work to home the second you step in the door.  Zac better understands how much is involved in running a house with two small children, their schedules, needs, and selfless care.  We are both more eager to share the burdens, more willing to compromise if the other one seems tired, and have walked (a little) in the other’s shoes.  It has helped us grow in both love and respect.  And for that, I am thankful.  

I’m thankful too for the huge amount of personal growth I’ve experienced.  I feel like a more grown up version of myself, albeit slightly haggard :-)  I am acutely aware of how strong I am and how much I am able to endure.  After Everett, when people used to tell me how strong I was, I’d shyly disagree.  Now when people say how strong I am, I say I know no other way to be.  And that’s the honest truth.  I know no other way than to survive.  And I’ve found pride in the person I’ve become.  I’ve also learned that it is ok to not be ok.  It’s also ok to tell others that you're not ok.  In this comes a share of the burden and suddenly accepting help doesn’t seem so shameful (the acceptance of help is a learned skill).  It is also ok to be angry, frustrated, upset, broken, and sad.  None of those emotions mean that you’ve given up or are unappreciative of the blessings in your life.  Those emotions are real.  And in acknowledging them you find growth and maturity.  In feeling them, you develop a profound appreciation for happiness.  

I’ve also learned that life won’t always be easy… there isn’t a quota for suffering.  That being said, we’ve had our fair share of challenges.  But we’ve weathered them all and come out better because of them. I continue to believe that even in the most desperate of circumstances, there is a blessing and a benefit if you look hard enough (or long enough) to find it. While we look, it is our job to keep the faith that life, ultimately, is good.  And I believe that, with all my heart.  

The boys are doing well.  Reece (the baby) broke his arm four weeks ago and ended up with he most adorable little cast.  He’s all healed up now and is probably missing the weapon that he used to beat on his brother.  Everett has started kindergarten and is loving it.  He's also missing all four front teeth at once!  There are more changes ahead for our family but we will adapt and weather them all in love for each other.  We choose happiness knowing that the heart of life is good.  


The Bollinger Family

Wednesday, July 8, 2015


Dear Family and Friends,

Zac completed his radiation course today!  He is so happy to be one day closer to feeling better.  I am surprisingly very emotional.  Seriously, I could cry.  Such a relief to have that behind us.  Such hope looking forward to better days ahead.  

We will not know if the tumor is gone for some time.  Radiation works over months even after the treatment is complete.  So for now, we pray this will be the final step toward healing.  


The Bollinger Family

Tuesday, June 30, 2015

The Countdown Begins...

Dear Family and Friends,

The countdown to the end of radiation has begun!  Zac has five treatments left.  Woohoo!!!  The end of radiation cannot come soon enough for him and for our family.  For the past three weeks, he’s been battling almost constant nausea, occasional vomiting, muscle soreness, and fatigue.  Zac reports that he feels like he has the flu, especially in the evenings and most especially on Friday nights.  As the effects of the radiation are cumulative, it makes sense that his worst days are Fridays.  He spends the weekend recovering, then just when he’s starting to feel better, it’s back to treatment.  Not a fun cycle.  His skin is a little burned as well.  Looking at his back, it is easy to tell exactly where the radiation is going.  He has an oval shaped burn from the top of his scar to the top of his sacrum.  It is warm to the touch and he says it itches like crazy.  We are putting aloe on it for comfort.  I’ve been giving Zac some tips to help battle the nausea from my experiences with morning sickness.  So far most of them have worked!  I try to be very sympathetic with how he is feeling but I’ve also made a few comments about how he’s getting a taste of what it’s like to be pregnant ;-)  

Being tied to treatment everyday has been hard for Zac.  He feels trapped and confined.  Add to that that he doesn’t feel like himself and can’t do the things he wants to do, he just feels like so much of life is a big tease.  Having him less mobile, less able to help, plus working more has put a lot of pressure on me.  Zac’s doing his best but there’s just a lot to be done.  So I’m looking forward to radiation ending too so that life can get back to something closer to normal.  

Zac’s physical therapy continues to go well.  He’s developing and defining muscles that he lost while in the hospital.  He is very motivated to keep the weight he’s lost off and he’s really committed to working out and strengthening himself.  I’m proud of how hard he’s working.  He will continue physical therapy until he’s scheduled to return to work in early August.

His final treatment day is Wednesday, July 8th.  I’ve started a countdown calendar to help keep his eye on the prize.  Thank you all for continuing to pray and check in with our family.  We are always so humbled by the love you have for us and our children.  We’ve learned so much through this experience…mainly that we are surrounded by some pretty amazing people!


The Bollinger Family

Sunday, June 7, 2015

After Seven Treatments...

Dear Family and Friends,

Zac has had seven radiation treatments thus far (one less than scheduled because the radiation machine was down one day last week).  He’s already experiencing side effects, which we were really, really hoping to avoid.  He has been intermittently nauseous, has thrown up once, is having some pretty bad GI upset and is starting to get a little burned on his back.  No fun :-(  

But in all that there is good news. Overall, he’s tolerating it pretty well.  The extreme fatigue hasn’t hit him yet (still hoping that’s a few weeks off) and according to the oncologist, the nausea should stay pretty stable and not get worse.  So that’s something.  He also had another MRI of his cervical spine to check for tumors there, because in his previous eight MRIs there was never a clear shot of that area, and it showed no tumor.  Another great thing.  He is progressing nicely with his PT and has really embraced rebuilding his strength and his body.  On days he doesn’t have PT, he is swimming or walking or sometimes doing both!  He is also embracing this time at home to focus on the boys and is spending quality time with each of them.  Radiation happens each weekday at 4:15pm in SLO and only takes about 30 minutes.  He’s usually back home by the time I get off work and we have a little time to play before dinner, baths and bed.  

We have so much to be thankful for!  Those long days in the hospital seem so far away as everyday life has replaced those dark memories with happier ones.  Thank goodness for our children who keep our focus forever forward…and for making us laugh every day.  Thank you for your continued prayers and love for our family.  


The Bollinger Family

Monday, May 25, 2015

Radiation Starts Tomorrow...

Dear Family and Friends,

Thank you for your continued support!  I’ve received so many texts and emails lately just checking in on us…it’s been so heartwarming.  I must apologize for the delayed update.  These days I’m barely getting everything accomplished before it’s time for bed.  Then, it’s wake up and repeat.  I’m not wanting to complain but things have been overwhelming.  I remind myself every morning that all this is temporary.  How anyone would ever survive this experience without their family and the multitude of supportive friends is beyond me!  We are so blessed to have people we can lean on.  Ok, enough whining.  

Zac starts radiation tomorrow.  Our insurance never did budge on their decision.  I can think of a few choice words to call them but instead I choose to believe that this alternate plan is part of God’s greater plan for Zac and our family.  His radiation oncologist came up with a “comparable plan with a negligible increase in radiation runoff to the surrounding organs” to quote him exactly.  This new plan is really the best we can do.  We can’t wait any longer to fight the insurance as it is the radiation that is holding Zac back from returning to work.  We’ve already lost two weeks to this battle.  It’s time to accept the things we cannot change and move on.  

Zac’s apprehensive about the radiation.  The doctor discussed the side effects at such length that I think we are both nervous about how this is going to go.  Nausea is most common and hits patients immediately after treatment.  Zac will  take an anti-nausea medication 30 minutes before every treatment to help with that.  Luckily the nausea dissipates in the hours following the treatment, unlike chemo where is can linger all day, every day.  The second most common side effect is extreme fatigue.  He’s so tired already that imagining more fatigue is almost incomprehensible.  I know he’s feeling bummed as he’s just started feeling better.  However, the effects of radiation are cumulative, so I’m really hoping that he will feel pretty good for the first few weeks as the radiation cumulates.  But only time will tell.  

This week Zac finally started feeling closer to his old self.  He’s still very fatigued and sore and he’s still learning to accept his physical limits (although they are temporary), but he’s felt his best since the surgery.  He’s started getting out of the house more and now that he can pick up Reece, he’s able to participate more in family life.  That’s been very helpful for all our attitudes ;-)  He continues with physical therapy twice a week.  Zac’s uncle, who is a physical therapist in Folsom, took the time to find Zac’s physical therapist here.  She has experience in rehabilitating back surgery patients like Zac, where the area of insult is very large.  Coming back from this type of surgery isn’t a few month process…it’s likely to be a year before Zac’s back at his baseline function.  Reminding him that his progress is going to be slower is a daily conversation in our house.  He is impatient and frustrated (rightly so) and all of this has been a lesson in learning how to support him in the way he needs.  

This upcoming Saturday we will march in the 2nd annual Central Coast March for Babies to honor Everett.  I’m giving the opening speech and am so excited to march again.  It’s been nice to have something to look forward to and another place to put my mind.  Last year’s walk was so inspiring and I’m looking forward to feeling that closeness to others who have walked our journey.  Last year, Everett was the only surviving child being honored that day…the only surviving child.  We have been so blessed in this life!  If you want to walk with us, let me know and I’d be happy to send you the information.  

As we start on this new challenge, please pray that Zac experiences minimal side effects from the radiation.  Please pray that the radiation only touches the tumor cells and none of the healthy tissues near the tumor.  Please pray that this treatment will bring healing and closure to this chapter in our lives.  Thank you for loving us.  We couldn’t do any part of this without you.  You have blessed our lives and made a difference for us just my being you.  Thank you!


The Bollinger Family

Wednesday, May 13, 2015

Radiation Prayers Needed!

Dear Family and Friends,

Today we found out that our insurance has refused approval for the type of radiation that has been prescribed for Zac.  He has been ordered IMRT (Intensity Modulated Radiation Therapy), which is the newest type of radiation.  What makes the technology novel is that this radiation can essentially be given in a 3-D manner.  Technicians are able to focus the radiation photons to the shape of the specific tumor, thus minimizing the radiation”run off” to the surrounding tissues and organs.  Since Zac’s area of radiation will be very large (over 12 inches), and he is so young in age, and because his spinal cord will be involved in the radiation area, this type of radiation is his safest option for short and long term side effects.  

Our insurance company does not see it this way.  They are calling IMRT in relation to treatment of ependymomas “investigatory.”  They went so far as to say there is no evidence that IMRT is more effective than traditional radiation for treatment of his type of tumor.  While that might be true, it’s not the effectiveness of the radiation we are worried about…it’s the side effects.  His radiation oncologist already appealed the denial, which our insurance company denied again.  The second step was sending Zac’s case to the the insurance company’s peer review board.  They also denied approval.  So, we’ve filed a formal grievance, which unfortunately could take 30-60 days to get a response.  Our doctors here and at UCLA are doing their best to get information to the insurance company, hoping to persuade them into approving the treatment.  We get one chance to try to change their minds.  

So I’m asking for prayers that the insurance company would be moved to approve the treatment.  Zac is so young to be enduring radiation and this therapy will give him the best chance of continued health in the long term.  I’d also like prayers for their decision to be hasty, as Zac cannot return to work until four weeks after radiation is complete, so time spent waiting now is time keeping him out of work later.  This is very frustrating for him.  It is equally frustrating to have people with little medical knowledge, who are often focusing on a bottom line, determining the health and well being of our family.  Of course to us, none of this is new.  We fought the same battles with Everett.  Fortunately, we are experienced in what to say and how to say it.  We understand how the system works and how to make it work for us.  But all this requires energy, which we find in precious little supply just now.  I know with your prayers, we can get this accomplished!  It wouldn’t be the first time they’ve moved mountains :-)


The Bollinger Family

Monday, May 11, 2015

Finding Normal...

Dear Family and Friends,

Zac and I are slowly finding our temporary normal.  I went back to work two weeks ago (thus the slow down in updates) and Zac has started physical therapy.  He is doing very well physically.  His therapy has been focusing on strengthening his legs and core, with the exception of his back.  Therapy wears him out but he’s so happy to be working on his recovery.  His pain has increased a little, as he’s pretty sore after his sessions, but the type of pain he’s experiencing is totally different than what he was enduring before.  For that he is thankful.  He will start radiation sometime this week.  He is able to drive himself which is a huge blessing.  He will not be able to return to work until four weeks after his course of radiation is complete.  So it will be quite a while before he’s back into his normal routine.  He been focusing on getting out of the house everyday, even if it’s just to pick up Everett from school. 

Emotionally this past week has been hard.  I’m not home during the day (I’m working an extra day while he’s off to bring in some more income) and he’s not used to being home during the week.  He has cabin fever combined with a feeling of loss of purpose.  For a man who is so dedicated to his job, to not be able to provide for his family has been frustrating.  He’s also just starting to process everything that happened.  I don’t think he quite realized how sick he was and how close he came to a less functional life.  He’s working through the emotional toll of being hospitalized and the ramifications of his current physical state.  There is also a fear of the unknown as he starts radiation.  He’s dealing with a lot.  

The kids are doing great!  It’s been so long since Zac was physically able to care for them that they’ve required very little coaching on being cautious around him.  Everett has developed some new independence out of necessity.  Reece is walking everywhere, which adds a new level of fun to our house.  We continue to have so much support.  I haven’t had to cook dinner since we came home!  And there hasn’t been a day without an email or text just checking in on how we are doing.  You all are so amazing and have done so much to lift us up!  You may think a simple text or quick meal can’t really make a difference but trust me, they do!  We love you all and are so thankful you are on this journey with us.  It really does take a village.  


The Bollinger Family

Saturday, April 25, 2015

Follow Up...

Dear Family and Friends,

This week has been full of follow ups and acclimation to being at home.  Zac is doing so well!  His back pain is the best it has been in over a year.  Except for the surgical pain, which is very tolerable, he is feeling “awesome.”  His tolerance for activity is steadily increasing.  He can be up about an hour now before needing to recline and rest.  He has stopped using the cane altogether.  Each night he is sleeping better.  I’ve been very, very pleased with his healing.  

On Wednesday, we met the radiation oncologist who will be prescribing Zac’s radiation therapy.  The course will be longer than previously recommended; he will go to radiation five days a week, for six weeks straight.  His treatments will start the second week of May.  The area of radiation will be from T11 (just above the tumor) to the dural sac (the end of the cauda equina).  This will guarantee radiation of not only the tumor area but also the borders and a little beyond.  The daily dose of radiation will be relatively small, but with a large cumulative effect on the tumor.  He can expect minimal side effects from the radiation itself.  The most common side effect being fatigue.  Nausea is also common in radiation of the spinal cord.  He will be treated with nausea medicine before each treatment.  Other than that, he has no precautions for handling the kids.  The treatment itself takes very little time, lasting only about 10 minutes.  The machines take longer to set up than it takes to actually deliver the radiation.  He will have a CT scan next week to determine anatomical markers for where the radiation will be focused.  Then he will be tattooed with those markers on his skin so the radiation hits the same area each time.  

Also in the next few weeks, we will be banking his sperm.  It’s a delicate subject and one that most people our age don’t have to think about.  Because of the location of the radiation, there is a chance that Zac will be sterile after the treatment.  While we have no formal plans to continue expanding our family, it was not a decision we had come to before his diagnosis.  And because it is a HUGE decision, which I simply feel I cannot make in this moment, we will be banking some just in case.  This is one of those things we thought we’d never have to do in our lives, and yet here we are.  

His follow up with the neurosurgeon was on Friday.  He had a MRI with contrast which showed NO CSF leak!!!  The surgeon said he’s doing great for the rough hospital course he had.  His staples were removed and he no longer has to wear the corset brace (which he is thrilled about).  He is allowed to lift 10 pounds now and will start physical therapy in a week.  From here, the radiation oncologist will order his follow up scans.  

I can’t even begin to tell you how loved we feel.  My parents have been saying that they’ve overheard strangers talking about Zac and our family at gatherings not knowing that my parents are part of our family.  All of this touches me so deeply.  Over the years, Zac and I have toyed with the idea of moving out of the area.  But the one thing that has always kept us here is the amazing friends and family that we are so blessed to know.  This community that surrounds us is incredible.  We know how lucky we are.  And we wouldn’t leave here for the world!

Believe in Miracles,

The Bollinger Family

Saturday, April 18, 2015

Being Home...

Dear Family and Friends,

Zac is all settled in at home.  He still wakes up thinking he’s still in the hospital.  After 23 days of being there, I can’t blame him.  Overall, he’s doing well.  He has to wear a back corset continuously for the next six weeks.  It’s to help place constant pressure on his back and prevent any future CSF leaks.  He’s become pretty accustomed to it already.  He can walk around as tolerated, but about 15 minutes upright tires him out.  He can’t lift any more than 5 pounds, can’t bend over, and can’t drive.  He is walking with a cane as it’s still difficult for him to completely straighten his back.  His pain is tolerable.  I’m very pleased with his healing.  He is loving being home, especially sleeping in his own, comfortable bed!

Everett was thrilled when Zac came home; he came running out the front door screaming “Daddy!”  Reece stared at him for about three minutes, then put his arms out for him.  A few friends came over and decorated our house with welcome home balloons, a huge sign, and a ton of cards made by all our friends’ kids.  Zac was touched when he saw everything.  

We have our consultation with the radiation oncologist on Wednesday and our follow up at UCLA on Thursday.  Thursday will involve a MRI first to check for any CSF leaks, then we will see the neurosurgeon again.  As long as everything still looks good, Zac will be able to start physical therapy.  Radiation will begin in probably 4-6 weeks.

Thank you all for your love, support and prayers.  We are continually in awe of the outpouring of love from those around us.  We are so blessed to have such people in our lives!

Believe in Miracles,

The Bollinger Family

Thursday, April 16, 2015

Look Who's Home...

Dear Family and Friends,

Zac is home!!!  Praise God.  Our family is reunited and sleeping under one roof!  We are so blessed!

Believe in Miracles,

The Bollinger Family  

Tuesday, April 14, 2015

Making Progress...

Dear Family and Friends,

Zac is now post-op day #2 and just moved out of ICU.  He has completed his 48 hours of lying on his stomach and is now getting up and walking to the bathroom.  His pain is better today than yesterday but is still quite substantial.  He has completed two hyperbaric chamber therapy treatments.  These sessions use a steel tube with pressurized oxygen to force oxygen into the tissues and promote healing.  From the research I did online, the results can be quite effective.  Each session is two hours of lying in the tube, which is completely enclosed.  It doesn’t sound fun; luckily Zac isn’t claustrophobic.  

The big, great news is that we got the approval for Zac’s radiation course to be done at home!  The oncologists were originally indicating that the treatments would need to be done at UCLA because of the rarity of his tumor.  But today the attending said our facilities are very capable of completing their plan.  Whew!  Those treatments will start 2-6 weeks after discharge, depending on Zac’s healing.  

We are making progress…hopefully toward home.  On a side note, I wanted to include this short conversation that I had with Everett today.  I was running a little low on faith this morning and God answered my need and then some.  Our miraculous boy certainly is a gift from God.  I know he is destined to change the world.

E: "Mom, who is God?"
Me: "He is a righteous man who listens to our prayers."
E: "He takes care of us."
Me: "Who told you that?"
E: "God."
Me: "When did he tell you that?"
E: "On the day I was born. He said I had to be brave. He said I could do it. He said He would take care of me."

Believe in Miracles,

The Bollinger Family