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!

Love,

The Bollinger Family  

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.  

Love,

Mama and Daddy

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.  

Love,

The Bollinger Family

Complete...

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.  

Love, 

The Bollinger Family

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!

Love,

The Bollinger Family

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.  

Love,

The Bollinger Family

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!

Love, 

The Bollinger Family

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 :-)

Love,

The Bollinger Family

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.  

Love,

The Bollinger Family

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

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

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  

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

Very Confident...

Dear Family and Friends,

Zac’s second surgery took about five hours.  The surgeon had to completely open his original incision in order to visualize the entire area of sutured dura.  He did locate one pinhole leak from a suture, which was actively leaking.  He micro sutured this area, created a muscle patch over it, then placed an artificial patch just for good measure.  He feels “very confident” that this will work!  Zac will start the hyperbaric therapy tomorrow in order to speed his healing process along.  

He’s in ICU again tonight but should transfer out tomorrow.  He is back on a pain pump and was very uncomfortable immediately after surgery.  Since then, the pain medicine has started working and he’s much more comfortable.  The next 48 hours will involve limited activity as the area (hopefully) closes.  

The surgeon has never used the words “very confident” with us thus far so I’m taking that as a really good sign!  We pray that this is the last hurdle before we end this race.  We thank you all for your prayers and good thoughts!  You continue to humble us with your love.

Believe in Miracles,

The Bollinger Family

Disappointment...

Dear Family and Friends,

Disappointment actually doesn’t even begin to cover what we are feeling.  They should invent a new word for feeling like you’ve had every part of your body and mind pummeled for three straight weeks.  Maybe I will come up with one but right now, I’m too tired.  Zac has to have another surgery.  The artificial patch didn’t work and he is still leaking CSF fluid.  The area that was drained has completely filled up again despite him lying on his stomach for 48 hours with a weight on his back.  Ugh.  We were given options to wait and watch or go back to surgery and have the covering of his spine (the dura) re-sutured.  Zac has opted to have the surgery.  

It will be done tomorrow.  After the surgery he will have to lie on his stomach again for another 48 hours.  After that he can get up and start moving.  After a day or two of activity he will have another MRI to evaluate if the surgery worked.  The chance of success is 80-90%.  The surgeon also mentioned possibly instituting hyperbaric chamber therapy to promote healing in Zac’s body.  I suppose this would start the day following surgery and would continue for two days.  If everything goes according to plan he could be home by the end of next week.  At that time, we would be approaching one month in the hospital.

We could really use some prayers for strength and a good outcome.  This has been an exhausting and all-consuming experience.  But we continue to have faith that there will be a benefit larger than the suffering we are feeling now.

Believe in Miracles,

The Bollinger Family

Tummy Time...

Dear Family and Friends,

The procedure to drain Zac's back was completed yesterday at 5:30pm.  The surgeon drained 24ml of CSF fluid out of his back.  This is about 15% of the total circulating CSF fluid in the body.  After the fluid was removed, the surgeon injected a two part patching agent into the hole where the CSF was leaking from.  According to the surgeon, there were two positive things that draining the fluid told us.  First, the fluid was a rusty, amber color, implying that it was old fluid.  Fresh CSF fluid is typically clear.  Second, during the procedure there was a 10 minute delay when the surgeon was able to watch the leak area.  During that time he saw no active leaking.  All great news!  The surgeon feels that the leak had likely sealed itself off, but he was glad to  get the fluid removed and the pressure released.  Zac has done really well with staying on his stomach for the past 24 hours.  He has a back brace on, a 10 pound weight in the middle of his back, and he is only allowed to use the restroom and sit up to eat.  He's taking the positioning like a champ!  Just looking at him is uncomfortable.  I can't imagine what he is feeling not being able to move.  But he knows this is necessary to avoid another surgery.  

We received the pathology results today and we are happy to say the tumor is BENIGN!!!!!!!  Praise God!!!  It is a stage II which means it is slow growing, but not the slowest growing (which would be stage I).  So, radiation is pretty much definite.  We are meeting with neuro-oncology tomorrow to determine a course of treatment.  

Overall the news of the past 24 hours has been so, so encouraging.  I know that is in huge part to all of your prayers and positive thinking for us!  Thank you for continuing to give us your strength.  

Believe in Miracles,

The Bollinger Family

P.S.  Zac has lost over 30 pounds since being admitted!  He looks great!  Not the best way to lose weight but we will take it :-)  

Interventional Radiology...

Dear Family and Friends,

Zac was just taken to interventional radiology to have the fluid in his back drained.  His neurosurgeon decided that he still has a small leak.  This leak is too small to produce symptoms but might become a larger leak with increased activity once Zac comes home.  So he decided that the fluid needed to be drained and an artificial patch placed over the area.  After all this is done, Zac will be placed on his stomach, with weights across the incision on his back.  He will have to maintain that position for the next 72 hours.  Ya…three days…stuck on his stomach…not fun.  

I can’t imagine how uncomfortable Zac is going to be.  I can’t imagine not being able to move after already being bed-bound for the past week.  How he (we) will make it through this, I don’t know.  This treatment is an attempt to save Zac from having to be opened back up and the leak sutured closed.  So it’s a worthy cause.  But still, at the moment, it seems an unsurmountable task (without the use of large amounts of sedatives).  

Please pray that this procedure closes the leak.  Please pray for Zac as he holds this position.  Please pray for me as I try to keep him calm.  Please pray for our children who are forever being left by us.  Please just pray that this time in our lives comes to an end soon.  We are strong, but my goodness…this is hard!

Believe in Miracles,

The Bollinger Family  

Scare Tactics...

Dear Family and Friends,

Today. Was. Exhausting.  At 7am, a neurosurgical resident told us that the newest MRI result showed a larger leak than in the previous scan.  That resident wrote orders to make Zac nothing to eat or drink for the rest of the day and restarted IV fluids, implying that a second surgery was needed to suture the leak closed.  However, nothing was scheduled or definite.  We spent most of the morning reeling, as this wasn’t expected since Zac’s symptoms have been improving.  Around 1pm, the neurosurgeon’s PA told us that the residents were “puzzled” by Zac’s lack of symptoms with the larger leak scan result and that they weren’t quite sure what to do about it.  Finally around 3pm, the actual neurosurgeon determined that the larger leak is just residual from the original leak and that Zac does not need a second surgery!  In fact, he will probably be discharged tomorrow.  Thank goodness!!!

For those of you who haven’t had the pleasure of an experience at a teaching hospital, the hierarchy of doctors goes as follows: residents, fellows, attendings.  Attendings are the big shots (like Zac’s neurosurgeon) who train new doctors and come up with cutting edge techniques.  Fellows are doctors with some experience but not as much as the attending.  Then there are residents…who can act like teenagers thinking they are grown-ups.  Ugh.  The resident today was one of those.  Overall, our experience has been pretty positive.  But today was beyond frustrating and scary because of an overly ambitious and minimally communicative staff.  Arg!  

Anyway, it is behind us now and the important part is that Zac is hopefully coming home.  He’s been walking the halls and is feeling really great.  The emotional toll of today left both of us fatigued but that should give way to total happiness when our family is back together under the same roof.  In all the fuss, we forgot to ask for the pathology results.  We are hoping to have those before we leave, so please keep praying that the tumor is benign.  Also, please pray that Zac gets to come home tomorrow.  We are so ready!!!

Believe in Miracles,

The Bollinger Family

Big Improvements...

Dear Family and Friends,

Zac is ten days out from surgery and finally feeling much better.  He was taken off of bedrest this afternoon.  He was able to shower and walk without a headache.  He is doing really well moving around; he walked the halls without his walker today.  His back is sore but he’s weaned himself off all the extra pain medicine he was taking after the surgery.  So he’s on nothing more than what he was taking before his diagnosis.  He’s done really well.  

He had a follow up MRI this afternoon to evaluate the CSF leak.  His symptoms imply that it is improving but the surgeon wanted to verify.  As long as it doesn’t show a change, I think he will be discharged tomorrow or Wednesday.  We can’t wait!!!  We are still waiting to hear on the pathology results for what type of tumor it is.  Those results should be in tomorrow or Wednesday as well.  

Thank you all for your continuing support, love and prayers.

Believe in Miracles,

The Bollinger Family 

Answers...

Dear Family and Friends,

Zac’s MRI from yesterday showed a small CSF leak.  That leak is responsible for his headache.  The prescribed treatment is another 48 hours of bedrest, lying as flat as possible.  Doing this will hopefully allow the leak to seal on its own, thus avoiding a second surgery to close it.  We are hopeful the leak has already started to resolve as Zac is feeling much better today.  He was able to shower and be vertical for about 10 minutes before his head started to hurt, which is a huge improvement over the 1 minute of tolerance he had yesterday.  His physical therapy orders have been converted to bed exercises only while he’s on bedrest.  So he’s here until at least Monday.  His back pain continues to improve.  Today his dressing was removed and he was able to shower over his incision.  It looks good and is closed with no fewer than 45 staples!  

While we are disappointed to be spending Easter apart from our family, we are so thankful for Zac’s improvement.  We pray it continues in the days to come.  We are so thankful for all of your love, prayers and support and hope you all have a wonderful Easter.  We are thankful for all of you and also for my mom who remembered to make Easter baskets for the kids :-)

Believe in Miracles,

The Bollinger Family