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

The Headache Continues...

Dear Family and Friends,

Sorry I didn’t update yesterday.  I spent the entire day with my kids, enjoying them and drinking them in.  I had envisioned this grand reunion after 10 days apart.  Something like Reece reaching out for me while Everett ran toward me in slow motion calling out “Mama.”  Instead, I came home to a baby who wouldn’t let me touch him and a five-year-old who immediately asked where his present was.  Oh well, so much for that perfect moment.  After an excruciating 20 minutes, Reece finally let me hold him and Everett started professing just how much he loved me.  We played legos and took pictures and pet Jack and wrestled.  The TV stayed off, a friend dropped dinner by, and we were just together without distraction.  I needed that.  

Zac’s dad and I returned to the hospital today.  Zac still has a headache.  It seems to worsen when his head is above 30 degrees.  He is unable to do physical therapy because his head hurts anytime he is upright.  He had a CT scan yesterday which showed no CSF leak.  Today, because his symptoms persist, he had another MRI.  We don’t have the results yet.  Other than the headache, Zac says he’s feeling pretty good.  His back pain is manageable.  He coughed yesterday without pain for the first time in over a year!

We are praying that Zac’s headache either resolves or has a cause which can be treated.  We are so ready to go home and this delay is crushing.  We are still hopeful to be home by Easter…

Believe in Miracles,

The Bollinger Family

Complications...

Dear Family and Friends,

Zac woke up this morning with a headache.  In a typical post-surgical patient this wouldn’t be a big concern, but in a neurosurgical patient, it could be a sign of a complication.  The possibility being that Zac’s spine has a small leak of cerebrospinal fluid, thus causing the headache.  His MRI from yesterday showed no leak but a small one might not be detected on the MRI.  His headache worsens when he’s upright and is almost alleviated when lying flat.  It was so bad this morning that he declined physical therapy until the afternoon and only walked once in the hall.  The doctors feel confident that he simply did too much too fast, and yet the symptoms have earned him another day or two of observation. 

My mom and I are headed home tomorrow for one night.  I NEED to see my kids.  I need to hug them and smell them and talk to them and put them to bed.  I am exhausted and need to be home to get grounded again.  I will come back on Friday, hoping to bring Zac home before Easter.  His mom and younger brother will stay with him until I return.  To say this is frustrating is an understatement.  But we are patient and confident and know that he will heal with time.  We thrive on your love.

Believe in Miracles,

The Bollinger Family