Pictures Worth a 1000 Words

I love this picture, and look at those amazing white flowers

Favorite picture of the day - Sam loves his dad

"Sweet is the peace the gospel brings"

Kevin's treehouse - a boy's paradise

It's not a party without shaved ice

Salt Lake City Cemetery - September 30, 2011

Love my kids.  Love the sunflowers.  Love Kevin.

A highlight - white pigeons released in honor of Kevin

Pigeons soaring to U2's "Beautiful Day"

And it was a beautiful day.

Hope

Hello to my curious followers.  I assume that if you are reading this you just clicked on the blog out of habit, or for old times sake, kind of like me calling Kevin’s phone just to hear his voicemail.  People have asked me if I was going to continue the blog, and I still don’t know.  It really was about Kevin’s journey, with all of us tagging along, and if I were to continue I’d have to change the blog name to: “This Mountain IS Too High.” However, I would like to share some memorial service highlights, as well as post the amazing DVD of Kevin’s life . . .but in the mean time, I’ve made an interesting discovery that I wanted to share (with the 3 of you reading this).  Sometimes I would write blog entries that I never posted.  The following is one of them.

My good friend Susie sent me a decorative letter “H” for my birthday.  That
“H” can represent a lot of things.  Obviously Hegewald. A name we will forever have to spell to others. But when I look at that “H” displayed by our family portrait, I think of Hope. Hope has had a special place in my heart, and near my heart, throughout this challenge.  My sister-in-law, Christy, gave me a necklace with the word hope. I love it and I wear it constantly.  I take it off at night, but part of my brush my teeth morning routine includes putting my hope back on.  What it stands for changes.  Somedays, I hope for healing.  Others, I hope for comfort.  Mostly, I hope for understanding.  Not only do I wear hope near my heart, but I wear it on my wrist.  The “Hope for Hegewald” bands were the most amazing and inspired gift ever.  This is the first time I have mentioned them on the blog, because honestly, they created such a fashion craze, I didn’t want anyone feeling excluded from wearing a little hope on their own wrist.  The bands were thought of by our neighbor Kelly, our church’s Young Women’s President, and designed by a few young ladies. Do you want to know why they are blue and green?  Kelly asked Sophie Kevin’s favorite color and she said blue.  She asked me and I said green. (Sophie was right) When I look at the blue and green, it’s perfect for Kevin because it makes me think of green mountains in blue skies.  Kelly first ordered 400, to be given to all of the youth in our church.  Kevin teaches and works with the 16-18 year old boys (young men really) in our church and they hold a very special place in Kevin’s heart. With friends, and parents, and leaders, of those youth wanting their own bands, a second order for 400 more was quickly placed and slowly received, literally, on a slow boat from China.  The reach of the “Hope for Hegewald” bands has been amazing.  I catch glimpses of blue and green on the wrists of church friends, neighbors, hospital coworkers, school class friends, Vista del Mar staff members and teachers, soccer friends, dear friends, friends we didn’t know were our friends. We sent bands to parents, siblings, cousins, nieces and nephews.  I doubt Kelly knew what the effects would be of such a band. It definitely is an outward expression of support, unity, and faith in hope.  What she probably doesn’t know is it became an amazing conduit to opening up discussions for my children during those first awkward weeks of Kevin’s diagnosis.  When asked about the band, they were able to say, “it says Hope for Hegewald - because my dad has cancer.”  It’s an awful thing to say, but it’s a much more awful thing to keep inside and not say at all.  Kelly, I am forever grateful.  It has been my constant companion for the past 5 1/2 months.

Now here’s my discovery:

I have become a student of Hope.  I figured if I was wearing it, I’d better understand it.  Bruce R. McConkie states, “Hope is the desire of faithful people to gain eternal salvation in the kingdom of God hereafter.  It is not a flimsy, ethereal desire, one without assurance that the desired consummation will be received, but a desire coupled with full expectation of receiving the coveted reward.”  What?@!  All of the sudden these “Hope for Hegewald” bands took on new meaning . . .what exactly were we hoping for here?  There have been 1,000 of Kevin’s best friends wearing “Hope for Hegewald” bands, who like me, have been hoping for a lot of things - peace, comfort, understanding, a miracle.   Did we inadvertently petition the Lord for something even greater than these? . .the “coveted reward” of  eternal life? The prophet Mormon states, “And what is it that ye shall hope for?  Behold I say unto you that ye shall have hope through the atonement of Christ and the power of his resurrection, to be raised unto life eternal, and this because of your faith in him according to the promise.” (Moroni 7:41) I know that Kevin is one step closer to receiving eternal life. He was righteous, he was obedient, he was faithful, he endured to the end.

So, what are you going to do with your “Hope for Hegewald” band?  It would be ok to take it off and tuck it in a drawer.  Then one day when you stumble upon it you will be reminded of the part you played in helping Kevin achieve life’s greatest hope.  As for me?  I’m keeping mine on.  It reminds me of the AMAZING love and support of friends; and when my own time comes to return home,  I can only hope that I have as many friends petitioning on my behalf that I, too, am deserving of HOPE.  

This is the HOPE!!!

http://www.youtube.com/watch?v=AI50236nVWw&feature=colike

Brother Hegewald lives on... through the faces of his children, through the faces of the youth he so deeply affected.

This video was made by Walker Boyes and the youth of the San Clemente Stake.

We love you, Kevin.

Memorial Services

We invite all to attend the services honoring Kevin Hegewald...

San Clemente Memorial Service 

Saturday, Sept. 24th

11:00 am 

San Clemente Stake Center

310 Avenida Vista Montana

San Clemente, CA 92673

Viewing from 9:00 am - 10: 30 am.

Open House to celebrate Kevin 

2-4 p.m. 

Hegewald's backyard

(If you need the address, please email autumn.mcalpin@gmail.com)

**Donations: In lieu of flowers, please consider a donation to the Kevin Hegewald Memorial Fund, which you may submit at any Bank of America -OR- you may mail a check to Abby made out to the "Kevin Hegewald Memorial Fund." 

(For their address, email: autumn.mcalpin@gmail.com)

Salt Lake City Memorial Service 

Friday, Sept. 30th

11:00 am 

Cottonwood 14th Ward

2080 East 5165 South

Salt Lake City, UT

The Hegewald Family

From friends of the Hegewalds...

We will all miss this wonderful man who leaves behind a legacy of hope, faith, and living life to its fullest. Thank you to everyone for all your love and support for the family.

In lieu of flowers, the family has set up a family trust.

You can donate to "The Kevin Hegewald Memorial Fund" at any Bank of America.

-or-

You can mail a check to Abby made out to: "Kevin Hegewald Memorial Fund."

(Please email autumn.mcalpin@gmail.com for their home address.)

The Fight Is Over

He fought the good fight, he finished the course, he kept the faith.

At 4:45 pm. tonight our dear husband, dad, son, brother, and friend returned to his heavenly home.  

How grateful we are for the knowledge we have that he still lives.

Thank you to all of you who have climbed this mountain with us.  I love you.

Kevin, you will be missed.

Adversity

Two weeks ago I sat down next to Kevin with a notepad and pen in hand, ready to write down all of the things he wanted to accomplish before leaving us.  Three.  That’s how many things were on his list.  (Really, there were 4, and should have been 5.  #4 was help me plan his “party” and #5 record his personal history - favorite memories of his life.  Yesterday I told him it wasn’t such a good idea leaving me and his mom to write his history because we will probably argue over the details.  Kevin said, “that’s ok, there are so many interpretations” (to someone’s life story).  That made me laugh.)  

Ever since starting this blog Kevin has wanted to post something on it.  It has been very challenging watching Kevin lose the use in both of his hands, as the ability to type, text, write, turn on his phone, hit his dilaudid bolus, and even eat, were stripped from him. I now realize that watching him struggle to breath is challenging, losing his hands - an inconvenience.  So this morning I am helping Kevin accomplish #3.  This post is from him.  It’s a topic that he has thought a lot about, and personally knows a lot about.  Always striving to comfort another, it’s a discussion that he had with a dear friend of ours who suddenly and recently lost her mother.  

Why do we suffer afflictions and adversity?  Here are some of my thoughts:

1.  Adversity, pain and suffering fullfills part of a much larger plan that we understood before we were born. 

As premortal spirit children of loving heavenly parents, we agreed upon a plan that would give all of us an opportunity to learn, reach, grow and ultimately return to a heavenly home after we had been tested in this life.  We knew that some of us would be called upon to experience certain trials.  For instance maybe we were able to choose the challenges that would bless our own lives and the lives of those around us.  When it comes to adversity and pain and suffering, it is not just about that person who is experiencing it.  Rather, like a pebble dropped in a pool creating ripples which impact wherever the water touches, so too can those who suffer adversity impact those around them.  Of course we don't remember any of these premortal plans but is it possible that we decided to be afflicted in some way, be born with Downs Syndrome, or be sexually/physically abused in this earth life because we felt strong enough to endure and make these trials a blessing?  In Isaiah 58:12 it speaks of those who will build up old places and will be called repairers of the breach and restorers of paths to dwell in.  Are there those placed in our lives or families who become "repairers of the breach" by their ability to endure well and understand and overcome certain terrible trials?  The ripples of the one called upon to experience adversity  will change the direction of entire family lines, neighborhoods, communities, nations (Ghandi, Mother Theresa, my parents, and the ultimate example being Jesus Christ).  

2.  Because of natural laws and randomness, pain, affliction and adversity will happen to people. 

God loves to create, He loves order and beauty.  Satan promotes disorder, chaos.  Satans influence is a part of the free agency and mortal realm in which we live.  Natural laws are allowed to play themselves out not because of anything we have done.  Rather there is a component of randomness in mortality that no one has control over.  That is because, as the scriptures teach us, this earth life is Satans dominion and He constantly strives for chaos, disorder, oppression, confusion, darkness, etc.  Cancer is definitely all of these things as are many aflflictions and sufferings.   This concept is found in the book "When Bad Things Happen to Good People". 

3. Adversity "stirreth up" a people into remembering the Lord.  

Whenever the path gets too easy we tend to depend in the arm of flesh instead of the Lord.   Said in a more harsh way, as quoted from a Book of Mormon prophet:  "Yea, and we may see at the very ^atime when he doth ^bprosper his people, yea, in the increase of their fields, their flocks and their herds, and in gold, and in silver, and in all manner of ^cprecious things of every kind and art; sparing their lives, and delivering them out of the hands of their enemies; softening the hearts of their enemies that they should not declare wars against them; yea, and in fine, doing all things for the welfare and happiness of his people; yea, then is the time that they do ^dharden their hearts, and do ^eforget the Lord their God, and do ^ftrampleunder their feet the Holy One—yea, and this because of their ease, and their exceedingly great prosperity.

  And thus we see that except the Lord doth ^achasten his people with many afflictions, yea, except he doth visit them with ^bdeath and with terror, and with famine and with all manner of pestilence, they will not ^cremember him.

 O how ^afoolish, and how vain, and how evil, and devilish, and how ^bquick to do iniquity, and how slow to do good, are the children of men; yea, how quick to hearken unto the words of the evil one, and to set their ^chearts upon the vain things of the world!

 Yea, how quick to be lifted up in ^apride; yea, how quick to ^bboast, and do all manner of that which is iniquity; and how slow are they to remember the Lord their God, and to give ear unto his counsels, yea, how slow to ^cwalk in wisdom’s paths!"

4.  Adversity, pain and affliction is a result of bad choices we make.  When these choices are contrary to God's plan of happiness, the results are Satans plan- pain, suffering, chaos, etc. It is clear that the porn addict, alcoholic or gangsta have made choices that now have limited what they can do or become or experience.  I think this type of pain and suffering happens to everyone but in more subtle forms.

5.  We are sent to earth to be tested and proved herewith if we will do all the things the Lord asks of us (a little like #3)  But #5 does not imply that we have necessarily done anything wrong.  Rather, growth does not come but through trials and tribulations.  Even Christ (who was without sin) was tested, left alone to fend off the various temptations of Satan on his own.  This was in preparation for his ultimate mission on this earth life- to atone for the sins of all mankind.  Each person can look into their life and find adversity that has nothing to do with poor decision making on their part.  This is #5- one of the main reasons of life on earth is to be tested, to be proven, to grow and see if we will hold fast to the gospel of Christ despite what might be thrown our way. 

And lastly #6- Jesus Christ and Heavenly Father have need for you in the spirit world.  There may be sons and daughters of God who have grown and learned things in mortality which are now needed to help brothers and sisters, currently living in the spirit world (a place between mortality and the final judgement) who need to be rescued by this particular individual.  Such adversity may be found in an untimely death of a high functioning, God fearing person in this earth life, or further trials which seem to be teaching someone who has had more than their share of adversity.  We all know someone like this.  It is as if we could ask- why does the pain and suffering have to continue?  Perhaps because a greater calling awaits this individual for when they cross through the veil of mortality into the spirit world where more work will be performed on brothers and sisters who are living as spirits (this state of being is referenced in the bible albeit sparsely 

( See 1 Corinthians 15:20-29 and 1 Peter 4:5,6, and Luke 23:39-43 and Matthew 16:16-19.  These scriptures give us glimpses on what happens to our spirits at death and the power that exists to seal things on earth and in heaven by those in authority).  

Now think of the influence your mother has living as a spirit in the spirit world (also referred to as a prison or paradise depending on what ordinances and steps were taken in following the gospel of Christ while here on earth and were then "sealed" to this person as mentioned in Matthew 16).  She can do the Lords bidding on a much grander scale to those on earth who are ready to hear and feel her influence.  This influence is the promptings of the still small voice or Holy Ghost. 

OK these are my 6 reasons for earthly adversity.  Our job is to endure our challenges well and hold fast to the iron rod of the gospel.  May we all prove worthy of the challenges that are placed before us.  Then we can say I have fought the good fight, I have finished the course, I have kept the faith. 

Fight the good fight my friends! 

Kevin

Make Today Count

I had a dream last night.  Kevin was in his hospital scrubs leaving for work.  He took me in his arms and kissed me goodbye and told me over and over again how sorry he was to have to leave me.  I woke up a little sad thinking, that wasn’t a dream, that used to be my reality.  I then realized it’s still pretty close to my reality.  

President Thomas Monson said, “People facing death don’t think about what degrees they have earned, what positions they have held, or how much wealth they have accumulated.  At the end, what really matters is who you loved and who loved you.  That circle of love is everything, and is a great measure of a past life.  It is the gift of the greatest worth.” He continues, “Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present.”  This was from a lesson we had last week at Family Home Evening.  We made a commitment to each other that we would make every day count.  That’s our newest family motto.  I definitely miss the old days when our motto was “Work before Play” or “Be Nice.”  But I guess “Make Today Count” is a motto we should all strive to live by.  Some situations just encourage us to really do it.  So we asked our children, “If today was the last day our family might be together in this life,  how would you spend your time?  What would you do differently?”  There have been a lot more hugs.  And a lot more kisses.  We’ve always said “I love you” a lot, but we make sure it’s the last thing we say at the end of the night.  We decided that as long as you can go to bed at night knowing that your family knows you love them, and you feel loved by them, then you can go to sleep confidently and peacefully.  

With our new motto, Kevin has been faced with the decision on how he wants to spend his time.  The answer came more in what he didn’t want to do . .and that was to endure a painful drive up to LA for the COQ10 study.  So we’ve stayed home and have been blessed with ways to make each day count.  Labor Day weekend we were surrounded by  fun and activity that my sister’s and my brother’s families brought into our home.  Kevin even took a spin in his wheelchair to see a movie with everyone.  Last Wednesday was an exciting day . .some called it “1st day of school,” others, “bomb scare day.”  Did you see the bomb threat at San Clemente High School on the national news?  Three hours sitting in a stadium in the heat was Sophie’s first introduction to high school. Thursday afternoon our power went out (as did much of Southern California into Arizona)  We saw it as a gift - no tv, no ipad, no computer - all of us sitting around the family room lit with candles telling stories and eating Carls Jr. burgers.  Kevin said that was one of the greatest moments eating that naughty, unhealthy burger. Friday was another gift - NO school due to the power outage!  We were able to get in that last summer beach day that we had been deprived of over the rainy Labor Day weekend.  Our children enjoyed the cold water and warm weather with both sets of their grandparents.  I woke up early Saturday morning to rain.  I said a prayer thanking Heavenly Father for yet another stay at home family day (they just kept on coming!!) Unfortunately, I woke up too early (yes) and forgot that it usually clears up in San Clemente (yes), so by 10:30 am. all tennis, soccer, and football games were on.  The highlights this day included Sophie successfully conquering her first high school tennis match with a smile, Kevin taking another ride in his wheelchair to watch Ben play goalie for the first time (he was awesome!), and sending Josh out the door with his 3 uncles and granddad, wearing a red U of U shirt to the USC game! (we have a picture)

I did have a very scary moment last week.  Kevin was in excruciating pain and asked me to come see if his dilaudid pump was working.  When I looked at Kevin, his shirt was covered in blood!  Remember, he had a 16 platelet count. I silently freaked out, which means I said out loud, “oh my goodness, oh my goodness, we need to get you to the hospital” and on the inside I was thinking, well, I can’t really write what I was thinking.  With investigation, we discovered that his dilaudid pump had become unhooked, the tubing had filled up with blood, and was leaking out. Kevin simply talked me through flushing the line with saline, sterilizing the attachments, and hooking the pump back up to the tubing.  Just so you know, those are not skills I have ever had to perform before. He said that the dilaudid withdrawal he had been experiencing was one of the most painful things yet.  Usually I can’t relate.  But seeing that my mom left today after 4 weeks of being with us - I know withdrawal.  I haven’t bled out yet, but it’s still early.

So every day is a gift, just like Master Oogway said.  “Yesterday is history, tomorrow is a mystery, but today is a gift . .that is why it is called the present.”  (Even Kung Fu Panda quotes gospel principles) Today is a gift.  Make it count.

*Dang.  I meant to send this out Sunday night.  Right now, the "tomorrow is a mystery" is ringing true.  Last night, Kevin received critical blood lab results.  His platelets have dropped to 6, and his hemoglobin to 7.5.  We made it through last night with Kevin receiving extra oxygen and me bolusing the dilaudid pump every 10 minutes for pain.  We will be going to outpatient at the hospital this morning for blood and platelet transfusions. Please say an extra prayer for Kevin today.

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.  

No Pain, No Gain*

For some reason these words popped into my head last week.  It might have something to do with the fact that it was while I was getting a mammogram and I was seriously trying to consider what I was gaining, other than pain, from this experience.  Mind you, an experience that I had actually called and made an appointment for.  Two things actually came to mind.  First, I was witnessing a modern day miracle as I watched the technician try to take nothing and make it into something, only then to try to flatten it back into nothing.  And second, peace of mind.  Peace of mind - now there is a legitimate gain.  I thought I would apply my “peace of mind gain” to Kevin’s situation, and it just didn’t fit. I’ve stretched my brain all week trying to think of what Kevin is gaining from the pain he is in.  All I came up with was a little bit of sympathy and a stronger prescription.  The only conclusion I have is there must be an asterisk next to the phrase.  You know, the little asterisk that your brain overlooks because the words “EVERYTHING ON SALE” are screaming at you, and only with a second look and a magnifying glass do you finally see that little asterisk with the words “some restrictions apply” next to it.  I’m pretty confident this phrase must have an asterick:  no pain, no gain*  (*exception: there are times when there is pain, and no gain) That makes me feel better, but it doesn’t do much for Kevin.  He just got his 2nd round of chemotherapy this afternoon. Have I mentioned that we are using standard drugs right now?  Kevin’s not too happy about it. . .I guess, who would be?  This is Dr. Chawla’s recommendation, as the yondalis clinical trial was obviously not working for Kevin, tumors are growing, and we need to get the situation under control before trying another clinical trial (like the CoQ10).  Kevin’s white blood cells count was too low last week to get a round of chemo.  They say that’s what happens when you are getting blasted with radiation daily for over 3 weeks in two different spots.  So, here’s what the Hegewalds are praying for:  that Kevin’s sight will return to normal; that the radiation will be effective to alleviate the pain in his back and shoulder; that the chemo will slow down tumor growth; and what the heck, we still pray for peace of mind.  

I love you, babe

Bucket list #9:

Attend live U2 concert  - check!

“I love you, babe”

“I love U2”

Thank you Randy, Carri, and Christy for making it happen, and experiencing it with us.  It was a beautiful day.

Every eight years Kevin’s birthday falls right on Father’s Day.  This is one of those years.  I secretly cheer as I am able to roll the father’s day birthday celebration all into one.  It’s hard for me not to reflect back 8 years ago when we were having such a celebration.  Kevin had just been diagnosed with cancer the first time.  My parents were here visiting because Josh, our oldest, was baptized the day before, and Kevin was starting his first round of chemo the next day (June 20). We gave Kevin a big leather lazy boy type chair - “a cancer chair” called by some; a “healing chair” called by my mom.  My sister and brothers gave Kevin one of his favorite prints - “Prayer at Valley Forge” - a portrait of George Washington kneeling in prayer beside his horse.  That print has hung majestically above our mantle for the past 8 years.  It signified all that we needed to face our challenge - courage, humility, and a knowledge that it’s only possible with the Lord’s help.  Today we took down the George Washington portrait and replaced it with our most recent family photo.  Ironically, we find ourselves in a similar situation as 8 years ago.  But this year, Kevin’s parents and sister are here to celebrate the day with us, and our youngest, Sam, will be getting baptized later this year.  The “healing chair” is still here - all broken in with the leather all soft and worn - and the new picture above the mantle still portrays what we need to face our challenge - each other.  We still have courage, and we still pray for humility, and fortunately, we still have the knowledge that it’s only possible with the Lord’s help.  But what we’re really, really grateful for today, is that we have each other.  

Kevin, I love you, happy birthday, happy father’s day. . .eight years from now, I will let you hang whatever you want above the mantle!!  Birthday cake today . . .chemo tomorrow!  xo

Today - by the numbers

3 number of hours Kevin received chemotherapy (started standard drugs treatment today; 
        will go 3 Mondays on, then 2 Mondays off, etc.)

10 number of radiation treatments left on his groin

13 number of radiation treatments left on his spine (location of tumor responsible for
        shoulder pain)

4 number of fingers Kevin sees if I hold up 2 fingers (waiting patiently for his vision to be 
        restored)

20 number of mg. of decadron Kevin took 

2 number of diet cokes Abby drank (total red flag)

3 number of kids sick with a cold

4 number of empty kleenex boxes

1 number of flat tires fixed

3 number of men who saw me in my pajamas getting flat tire fixed

5 number of feet of moldy drywall removed from my kitchen

2 number of fans in my kitchen

0 number of mistakes Sophie and Ben made in their piano recital

7.5 number of days left of school

~ (infinite) number of ways we’ve felt blessed