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