New "Say NO to Drugs" Campaign

Days this week to LA:  4 and 1/2.  Today Kevin made it half way to LA before having to turn back.  Kevin’s platelets have been decreasing all week, so first thing this morning he needed to have a blood test.  Based on the results, one of the following scenarios would take place: a)if the platelets dropped below 20, he would go to the hospital for a platelet transfusion, b) if the platelets increased above 30, he would drive to LA for the COQ10 infusion, or c)if the platelets remained between 20 - 30, he would come home and watch movies all day.  Kevin was hoping for a) (only because a transfusion would help escalate his body out of the danger zone), I was hoping for c), but we went forward with b) until receiving the phone call that the blood results showed the same platelet count. (time to head home to watch movies) Despite the platelets, Kevin has done amazing this week.  Monday was a little brutal.  We spent 9 hours in the doctor’s office.  Because his dilaudid pump is using his portacath, Kevin’s right arm veins were used for the COQ10, and his left arm veins were used for NINE! blood draws. (Josh said, “Can they even do that?!”)  Kevin was getting so sick of the bad sticks.  He kept claiming that he has excellent veins.  And I agree with him.  I remember one of the very first times holding Kevin’s hand and looking down at his arms . .I had never seen such HUGE forearms (and veins!).  They looked just like Popeye’s! I knew this guy was no stranger to old fashioned manual labor.  So we were both perplexed that the nurse couldn’t hit his darn veins.  Our hot date night in LA was actually a lot of fun.  With Kevin in charge of the tv remote control I think we watched at least 6 different movies. Tuesday morning’s appointment was only a blood test (ha - only another blood test).  Wednesday was the 2nd day of the COQ10 infusion and my dad safely transported Kevin there and back and provided the entertainment in between. This left me behind to attend Freshman Orientation with Sophie and do some back to school shopping with Ben, Sam, and Soph.  The boys would much rather have been shopping with GG.  As we walked the isles of Target they would shout out at the next coolest thing, and then say, “Where’s GG?!” And it’s true.  Their mom stuck to the list that included shoes, backpacks, lunch boxes, and mechanical pencils, not big bouncy balls, legos, or bike helmets.  Thursday I was back on the road with Kevin.  Kevin commented that he could be the poster child for a “say NO to drugs” campaign - “anyone contemplating taking drugs, spend a day with Kevin and see how BORING druggies are!”  (Not quite sure what my excuse is, because I’m totally boring too!  Maybe someone should investigate if spending time with someone else on drugs, can make YOU boring . .kind of like second hand smoke)  Actually, Kevin is far from boring.  He continues to keep our family entertained.  Here are a few classics:  When we were flying to North Carolina, we had Kevin heavily medicated to endure the long flight.  We were standing on the airport curb checking in our luggage and Kevin was watching a lady paint her toenails before getting out of her car.  Kevin said to her, “I’ve seen a lot of things in my life, but THAT takes the cake!”  Yesterday as we were driving Kevin said, “I’ve looked at a map and the best way out of here is the 405.”  I completely agreed with him since we had been traveling on the 405 for 40 miles.  A few of his texts have been a little crazy. One late night Kevin was texting his good friend.  It started off on the right train of thought but somehow ended with “I love you sweetheart.”  Kevin had a good laugh the next day when he read what he had sent.  At least it was from the heart and intelligible.  A late night text this week was simply, “what dacchh kan i zayyyy yiuknow man?”  Which actually sums this week up perfectly!!

COQ10

Ever since starting this blog there have been several times when I didn’t know what to write.  Well, more accurately, I know what to write, I just don’t know how to write it.  Today is such a case.  The most pressing & amazing news is that Kevin was approved to begin the COenzymeQ10 study tomorrow in L.A! (For those of you following the details, read on; the rest of you can skip this next paragraph)

Kevin has been excited about this new clinical trial from when we first heard about it in May.  It is a nonchemotherapy, high dose vitamin therapy that effects the growth receptors, targeting the fast growing cancer cells.  Kevin loves the idea that it attacks the bad cells, while causing no harm to the good cells.  The requirement to have a 30 day washout period from any chemotherapy or radiation has disqualified Kevin from starting the program again and again.  The doctors finally threw us a lollipop (I’m talking a 800 mg fentanyl lollipop figuratively) suggesting that maybe he could start the clinical trial after only a 14 day washout.  However, when we consulted the calendar, that put our starting date on Labor Day. The doctor’s solution to the problem:  Start the following week on September 12th.  (like taking candy from a baby!!)  So I put to practice an important lesson - it doesn’t hurt to ask.  So I asked.  “What about starting the week before Labor Day?”  I was quickly reminded that that would most likely not be acceptable from the FDA with only a 10 day washout period from Kevin’s last radiation . . but they would ask.  Two days later, Thursday morning, we received a phone call requesting a new CTscan and an appointment in L.A. to sign the consent forms to start the program THIS Monday.  See, it doesn’t hurt to ask.  Speaking of asking . . . .

So, Kevin has been approved to start the COQ10 study tomorrow, which is an answer to our prayers.  It’s difficult to explain the emotion of actually receiving something that you’ve prayed for for a long time . . .and then hoping that you’ve been praying for the right thing.  At this time, Kevin and I both feel like this is the right thing.  His recent CTscan did show cancer progression - in the past 3 weeks, the nodules in his lungs have grown, and there are now nodules in his liver.  Systemic therapy, such as the COQ10 study, is our best hope of slowing down the progression.

So off we go to L.A, and back, and L.A, and back. . .every day this week, then three times a week for the next month(s).  Tomorrow is an 8 hour infusion day so Kevin and I are going to spare ourselves the long drive and spend the night.  I know what you’re thinking - hot date night in L.A. Yep, me, Kevin, his dilaudid pump, and the 8 pillows he sleeps with over, under, and around him.  I won’t say there isn’t anywhere else I’d rather be; but I can say there is no one I’d rather be with.  It is going to be a challenging few weeks, and we hope and pray that Kevin will have the physical strength necessary to endure it.  We ask for your continued prayers on our behalf. . .remember, it doesn’t hurt to ask.

Genies in a Bottle

It has been eleven days since Kevin came home from the hospital, and oh, what a week it’s been.  Fortunately for us, our burdens have been made bearable by the people who have become an important part of our lives.  Remember wishing you could have a genie in a magic bottle to grant you all of your desires?  Well, we have TWO!  They go by the names of Suzanne and GG.  Suzanne is Kevin’s home health nurse, but really a genie is the better description.  Anything that Kevin needs - Poof! - Suzanne makes it happen.  Even things that Kevin doesn’t know he needs - Poof!  “Are you comfortable?” (Please read any quotations in the most charming English accent) Poof! A hospital bed, commode, shower chair, even the bedside table on wheels appears in our master bedroom and bath.  (I pulled Suzanne aside and told her we might not want to make the bedroom so comfortable that he doesn’t want to leave it!) “How is your pain?” Poof!  Suzanne makes phone calls to the oncologist,  the pain specialist, the pharmacy, but only after plumping Kevin’s pillow, covering him with a blanket, and placing a cool washcloth on his forehead. (I think I am to model her appropriate behavior - kind of like “super nanny” - whom Suzanne shares a close resemblance with) Suzanne brings with her an amazing arsenal of resources.  Every day is a different visitor - a physical therapist to teach Kevin how to flap his arms and march his legs, an iv nurse to draw blood to run labs from the comfort of his bed, and a social worker, who I think was pretty much there to make sure I hadn’t completely lost it.  (fooled her) Watching the magic of Kevin’s needs being met, I decided to throw something at her.  WIthin 24 hours I had an actual hard copy of a form allowing me to engage in exhilarating discussions with our health insurance on behalf of Kevin.  That was real magic.  My personal Genie is GG, also known as Grandma Gayle.  The great thing about GG is she knows all of the correct appearing and disappearing acts.  She makes all dirty dishes, laundry piles, unwanted tupperware, rattling washing machines, squeaking dishwashers, cluttered cupboards, and obnoxious weeds - disappear.  At the same time she makes delicious meals, needed grocery items, school supplies, and happy children - appear.  In the week that GG has been here I counted 15 trips she made to the soccer field to drop off Ben and Sam.  And almost as many trips to the tennis courts with Sophie. GG brings to our family a full bag of talents and tricks.  Josh and Sophie are especially grateful for GG’s unfeigned enthusiasm for mythology, The Great Gatsby, and US history (read = summer homework!); Sam loves GG’s willingness to work on puzzle after puzzle (after puzzle); and Ben scored when his mom allowed him to watch a PG-13 Harry Potter movie because GG said she would watch it with him.  A quote from Nanny McPhee was, “When you no longer need me, then I will be gone.”  If my mom adopted this quote she would never be able to use her return flight.  Maybe my dad will fly down and rescue her some day (I just hope it’s after the summer homework has been completed! ha)

An update on Kevin’s condition: The first week was crazy trying to manage the pain. Friday afternoon we finally turned in the Fentanyl patches and lollipops and upgraded to a dilaudid pump.  Twelve hours later we spent a lovely 2 hours (midnight to 2 am) with the oncall nurse trying to increase the new medication to a level that would decrease the pain.  I completely agree with Kevin that God must have a special place in heaven for nurses (especially those that come to your home at midnight, with their makeup on!) Kevin finished his final (10th) cycle of radiation on Friday.  I told him we are going to have to think of another date we can have every day at 2:30 pm. Just having a difficult time trying to think of something that would be enticing enough to walk down the stairs and allow me to drive him crazy with my driving.  SO, we now hold our breath, cross our fingers, and pray that Kevin can remain “radiation free” for the next 2-3 weeks so he can start the CoQ10 study in L.A.  Hoping for a miracle.  (I’ll get Suzanne and GG on it immediately)

Kevin's Home!

That’s the great news in the Hegewald home!  Although there have been a lot of comings and goings today in our family:

Today my nephew, Tanner, left to serve a 2 year LDS mission to Arcadia, California (Spanish speaking).

Today Kevin’s sister, Christy, and her husband and family moved to Munich, Germany to live for the next 2-3 years.

Today my dad flew home to Salt Lake City, and my mom flew here.

Today Kevin came home!  I just had to say that one again.

We love you & will miss you Elder Johnston, Christy, Bruce, Tal, Max, Olivia, Ashton, Boston, Ava, and Granddad - part of our hearts go with you.  (Our hearts are pretty big right now, so we have plenty to share) 

Just Business

This blog is just business.  It’s inspired by the books Benjamin has been reading this summer - “A Series of Unfortunate Events.” The first book is titled, “The Bad Beginning,” and the final, 13th book is titled, “The End.”  I was looking forward to reporting on our vacation to the Outer Banks (which started with a “bad beginning”) but thought I’d better just jump to “the end.”  

After two  weeks of watching Kevin trying to manage his pain, we decided to cut his vacation a few days short and fly Kevin and my dad directly home to California last Saturday, August 6th.  The car ride home from the airport ended at San Clemente Hospital where Kevin was admitted for pain control.  On Sunday, a blood test showed Kevin to be anemic, and a CTscan unfortunately showed innumerable, tiny nodules in both of his lungs.  On Monday, Kevin was transferred to Saddleback Memorial in Laguna Hills.  He could only endure 15 minutes of a 45 minute MRI, but the results provided enough information to confirm 2 spots where the bone is growing into the spinal canal.  These spots would definitely account for the horrific pain that Kevin has been dealing with in his right flank and his ribs.  They did the 1st session of radiation on both spots that same day, with 9 more treatments scheduled.  Today (Tuesday, August 9th) Kevin’s pain is under control, but some adjustments to medication will be monitored for the next 24 hours with the hope that he will be able to come home tomorrow.

Grateful Heart

Thank you to my brother-in-law Eric who truly made our vacation possible.  You are an amazing doctor, and an even better drug dealer.

Thank you to all of our Southern relatives for your amazing hospitality, and for those who traveled from far just to spend a few hours with us.

Thank you Mom and Dad for creating a magical vacation.  Mom, thank you for orchestrating every detail, and thank you both for raising a family that loves to be with one another.

Thank you to Darin and Susie Gilson who drove me and the kids from Salt Lake City through the night so we could get home to Kevin.  Darin, I will never forget your immediate and unhesitating response, “Let’s get you home.”

Thank you Rudi and Eva for willingly driving Josh to St. George to meet his high adventure group.  It’s where Kevin wanted Josh to be . . . and it’s where Kevin would like to be, too. 

Thank you to my ward family and neighbors for the jam packed fridge, freezer, and pantry, the meals, the folded laundry, and the most incredible welcome home sight of hearts and love and well wishes covering every inch of our garage door . . . and front door . . . and windows.  I can hardly wait for Kevin to come home and see it.

Dr. K, Our MVP

Help! The Hegewald blog has been hijacked! This is good and bad-- good for Abby in that not having to compose her brilliant, witty, heart-wrenching, and heart-warming entries is relieving some stress on her end. Bad for all you readers in that the hijacker is not quite as brilliant, witty, heart-wrenching, or heart-warming of a writer as Abby is... The most important thing is you can still find your Hegewald news here. And the occasional picture, too.



Dr. K Updates:
Let's rewind a week ago today. (Friday the 16th) A scan of Kevin's hot spots in his back showed two white spots. :( Radiation began this Monday. 10 doses-- although Kevin used his fast approaching family trip or "I'm a doctor, too" wink and cajoled them into allowing him to double dose the treatments this week, 2 at a time. Needless to say, Kevin was pretty down and out this week. But while the church history portion of the big family summer adventure was edited out of the picture a couple weeks ago, the whole family was still able to depart today for two weeks with family. Kevin flew to Utah to meet road tripper Abby and the kids for a week in Utah. Then they will go to the Cannon Family Reunion in the outer banks of North Carolina (Norfolk, pronounced "Nawfawk" in Abby-speak.) While Kevin might not touch the ocean, he will have a great view from his bed.

The San Clemente ER is now safe to visit, reports Abby. Dr. Kevin worked his last shift last Sunday before taking disability. Abby said that was a week (or maybe a month) longer than he should have. Kevin has been experiencing substantial pain, so it's amazing he powered through so long. He is happy to be able to have more time at home to rest. He is now enjoying most of his time on his back, in bed. Well, except for when he embarks on a two week cross country adventure. But he can rest when he gets back. And great news, his eyesight is improving! Less double vision! So for any patients who will miss seeing Kevin in the ER, you can visit him at home where he will tell you the two nose, four arm problem you used to have is looking better.

And this Wednesday night, our MVP was honored at Angel Stadium for being a true ANGEL. Kevin was entered in an online/Facebook "MVP" contest and WON as one of the world's most valuable people. He was recognized in a pre-game ceremony on the field with four other MVP's. Horrible traffic made him a little late for the pre-game stadium tour he took with Sam in double-time, so he was sweating by the time the ceremony started. But along with his family and some super-fan friends, he made it all the way to the seventh inning stretch before deciding he wanted to take his seat pillow and finish stretching at home. Kevin was all smiles on the field and jumbotron. He is a true Angel to all who know him!! And a very deserving MVP!

Kevin, Ben, and Sam on the field in the pre-game ceremony

                                                                       Dad and Ben

The "MVP's"

                                                         Now, there's a jumbo smile!

We'll be back with more as the travelogue reports come through... In the meantime, keep up the great love and prayers for the Hegewald family! They feel each one, and man, do they deserve them!

So who's the hijacker, you may ask? All you need to know is I wear my HOPE FOR HEGEWALD bracelet every day with love and faith. And as a non-Hegewald, have full rights to boast and brag about this fabulous family who daily inspires all of us to live our lives with more kindness, happiness, and love!!!

Here's the Plan:

Here’s the plan:  What’s the plan?  I know that many of you have been checking in to see what’s the plan.  I even found myself checking the blog in hopes that it had been updated.  I looovve having a plan - everything is so much more tolerable, more doable . .heck, I’ll even take a bad plan over no plan at all.  When Kevin came home with his chemo schedule on June 27th and the next chemo wasn’t scheduled until August 15th, to put it kindly, I freaked out.  I determined that this didn’t even qualify as a bad plan.  I came to the conclusion that I must be needed to come up with a suitable plan.  When Kevin threw up his arms and yelled, “I can’t take it anymore!” I thought he was talking about the chemo; in fact, he was referring to ME and my constant badgering on what I thought the chemo plan should be.  So last Thursday, Kevin set off on a quest to determine a plan.  His good friend flew in for the day to accompany him, and again, I tried to take no offense to his statement that his presence was a “tender mercy” which could easily have been interpreted that when Kevin is around me he would simply scream “mercy!”  

1st stop: the radiologist.  The most recent radiation to his spine burned its path through Kevin’s esophagus, leaving him unable to swallow, eat, drink, or breath without pain.  Kevin actually found comfort in the assurance that this was in fact normal and will heal within a few weeks.  Party favor: a prescription for a “miracle mouthwash” to be taken 5 minutes before eating to numb the esophagus.  Result: When I asked him how one of my super gross, super healthy smoothies tasted, he replied, “This one wasn’t too bad.  That mouthwash numbs my taste buds too.” 

2nd stop: Dr. Chawla, LA oncologist.  After tracking the last few weeks of Kevin’s life - the esophagitis; continued shoulder pain, new back pain, new pelvis pain; low blood counts; fevers - Dr. Chawla’s the one who yelled, “mercy.”  He recommended no more traditional chemotherapy. Participating in the CoQ10 study starting in August is a possibility. (Since it is a clinical trial you have to be “clean” of radiation and chemo for 30 days; Kevin’s 3 weeks of radiation disqualified him from starting the CoQ10 study in July) Party favor: a shot of Xgeva, supposedly a “new and improved drug” comparable to Zometa (remember that bone strengthening drug they give to 80 year old ladies?) Result: Kevin is experiencing every single side effect listed: flu like symptoms, muscle aches, bone pain, back pain, fevers, sweats, and the big one, sciatica.  I’ve never actually seen anyone get electrocuted, but I have a pretty good visual of what it would look like just watching Kevin the past 4 days.

3rd stop: Dr. Tetef, local oncologist.  Dr. Tetef agreed with Dr. Chawla’s recommendation to discontinue the use of traditional chemotherapy.  Party favor:  Fentanyl patches.  I don’t know my narcotics but this one is supposedly up there.  Result: Kevin could hardly wait to slap one of those on.  Hopefully in a week he will start feeling the effects(ie. less pain!!)

So, now you know all that I know . . .and I still want to know, “what’s the plan?!”  I guess the plan is:  To heal.  To allow his body to recover from all of the radiation and chemo.  To get the pain under control.  To have faith.  And to recognize that even though I have NO idea what the plan is, God does.