Homeward Bound

H a r o l d W i l l i a m L e f r a n d t

June 4, 1962- September 14, 2008

In the quiet misty morning when the moon has gone to bed,
When the sparrows stop their singing and the sky is clear and red.
When the summer’s ceased its gleaming,
When the corn is past its prime,
When adventure’s lost its meaning,
I’ll be homeward bound in time.

Bind me not to the pasture, chain me not to the plow.
Set me free to find my calling and I’ll return to you somehow.

If you find it’s me you're missing, if you’re hoping I’ll return.
To your thoughts I’ll soon be list’ning, and in the road I’ll stop and turn.
Then the wind will set me racing as my journey nears its end.
And the path I’ll be retracing when I’m homeward bound again.

Bind me not to the pasture, chain me not to the plow.
Set me free to find my calling and I’ll return to you somehow.

In the quiet misty morning when the moon has gone to bed,
When the sparrows stop their singing,
I’ll be homeward bound again.

-Music and Lyrics by Marta Keen

Funeral Times

Wednesday, September 17th 2008

9:00-10:30 Viewing

11:00 Funeral

Alpine North Stake Center Chapel

1125 East Alpine Boulevard

Alpine, UT

Updating the Blog

All:

Mom and I have gone back and forth on updating the blog. It is difficult to share bad news. But I know we have a lot of family and friends far away, and they check this regularly to see if there is something new.

First, can I tell you how grateful we are for all of you? You have been our guardian angels, there to help us through this most difficult time. We have felt an outpouring of love and support, and we have needed it. Thank you for the notes, the emails, the blog posts, the gifts, the flowers, the simple acts of kindness... Thank you. This is what life is all about... it has inspired us to want to be better people, and to help others even when it is hard.

Dad. The doctors continue to tell us... days. Dad keeps waking up each morning with a smile on his face. He doesn't feel a lot of pain physically if he is lying in bed. If he tries to get out of bed... it hurts him terribly. He is forced to lie in his bed, but he is very peaceful when he is there. He has enjoyed those that have come and visited him, and loves spending time with the kids. We are so grateful that he isn't in pain. He still has his up days and his down days. There are times when he wants to talk, and times where he is so exhausted that he just sleeps for hours on end. It is hard to see his life like this... but it is amazing how comforted we have all been in knowing that he is in the Lords hands. He always has been, and always will be. This time has been a great testimony building experience for all of us. We want our family to be together forever. We know that we can be. How grateful we are for this knowledge. Without it, this trial would be much more difficult.

We love you all. Thank you for your thoughts and prayers on our families behalf.

Love,

Jon

Home

It is getting much more difficult to write on this blog as the days, and hours pass. But we feel strongly that we want to keep each of you informed and fulfill our promise to you that we will keep you up to date on Dad's situation. When this Meningitis presented itself we knew for certain that the Lord had provided a "tender mercy".  We knew it very well in the Emergency Room and into the coming days.  The doctors don't spell things out for us too much.  They just moved forward with a treatment plan and started treating the infection aggressively.  It became apparent pretty quickly that the doctors treatment plan was getting in the way of the Lord's plan.  One night Dad was running a 104 degree temperature and they were packing him with ice packs.  Mom knelt down and prayed and became keenly aware that we were doing something not right.  The next day when she talked with the medical team we learned that they were going to have to stop the chemo treatments to treat the meningitis.  The meningitis treatment takes 6-8 weeks.....and then we would lose the chemo battle.  Either way we lose and the fighting the meningitis would make a mess of everything and make the battle long and ugly for Dad.  

After getting more answers out of the medical team myself, Ashley, Jeanette and Mom met with a Care team that looks at the whole picture medically and objectively.  We really are on our 4th reoccurrence with Dad.  September, June and then July....three in the last year.  The writing is on the wall.  We felt very comforted in knowing that we should stop fighting and make Dad comfortable and bring him home.

Yesterday we brought him home and stopped all treatments.  We have started hospice care and he is so happy to be here with us.  The doctors have told us that the meningitis could take 2 days or 2 weeks to take him.  The tumors could take 6 weeks or 8.  So somewhere between 2 days and 6 weeks we will be sending Dad back home.  And ironically, this all feels really right.  Even though we hate it and it's tough.

Scott is home and when he heard the news over the phone he was angry at first.  "What do you mean we are not fighting!" And now he is here with us and he knows it is right.

This is so difficult for all of us to deal with. But when we listen to our heart we each feel at peace. We have felt the love of the Lord more deeply, and are grateful for those that have offered prayers on our families behalf. Thank you to each of you. We know that the Lord lives, that he has a plan. 

My personal testimony of the plan of salvation has grown so much, and I know that Dad is going to a GREAT place. My father has been the greatest example of one that truly loves the Lord. I have always watched him say his prayers before eating any meal, he never missed a day of reading his scriptures. He loved to go to the temple, and faithfully served as the ward mission leader... personally knocking on doors, FINDING those that had a desire to hear the gospel. 

We love our Dad so much. The time at home has already been so sweet. We are hanging on to every moment we have left. 

Love to each of you, 

Jon (The Lefrandt Family)

Another Bad Day...

My mom is truly much better than I, at expressing the thoughts and feelings that we have during the trials that we face as we battle cancer. She has an incredible gift of words and writing. But, I know that writing this is a burden sometimes and I wanted to take the opportunity to express my thoughts with each one of you faithful readers, and give you the current status as of today.

This past Monday Dad was doing much better, he was out riding his bike in the neighborhood. We really thought that we were on the up and up. Tuesday was a similar day. This morning (Wednesday) he and my mom got up with the kids, read their scriptures, and sent the girls off on their way to school. He wanted to get a lot accomplished today with his new energy. He even told my Mom that he wanted to get out and wash the windows. With a whole lot of optimism he decided to get in the shower and get ready for the new day that he had been given.

Shortly after getting out of the shower things began to take yet another turn for the worse. It happened rather quickly. His equalibrium was off, he had slurred speech, and violent vomitting began to occur. He also had a little rupture come from his incision where they had cut open his head 8 weeks ago. It continued to leak all day long, it wasn't blood it had a light pinkish color to it. All of this was completely abnormal and not part of the scheduled plan. My mom called the nurse and both determined that it was necessary to take him in to the ER. She got her things together and off they went.

I was working up in Salt Lake at the time and met them at the ER. Dad was all bandaged up on his head, and sitting in a wheel chair. He was asleep (Dad hasn't been tired for weeks by the way... constant energy). I tried talking to him, he said one sentence... he was hungry... and went back to sleep. They admitted him and that was the last time we heard from him for several hours. When the doctors would come in they would say, "HAROLD" in a pretty load voice. He didn't open his eyes and did not talk. Didn't even make a movement. They tried poking him, shaking his arm... nothing. All we could do was sit. They decided to do a CT scan, because this would give us the quickest results and we could see if there was new growth, bleeding etc.

The CT scan results came in, they found air in his cranium (extremely abnormal for 8 weeks post surgery). They were stumped as to what the cause was. Was their leaking spinal fluid? Was their an infection? Movement? They didn't know... They did a spinal tap and then the neuro surgeon team came to analyze the results what they are concluding is that Dad has spinal menengitis. They will confirm this in the next couple days, but they are treating it as this for now. This is really a hard thing for us to really get our arms around. It is hard enough worrying about the tumors in his brain and what they are doing...

Dad is very swollen, and rashy, and still has not been able to really communicate with us through the day. He feels pain and pressure in his head. We have to wear masks when we are in his room because of the worry of more infection. This is a very serious and we do not know what the outcome will be.

With all this being said, you may also be wondering how my mom is holding up, the kids etc. We, together as a family have been fighting cancer for three years. With those three years we have learned how to deal with our emotions to a certain extent. We have been able to see the worst case/best case scenario. We know how to exercise faith, and pray and trust in the Lord and his plan for each of us and for our Dad. My Mom is a rock. She is simply amazing, there is no better word to describe her. Many of you that know her would agree. As I have watched her communicate with the doctors I was amazed. To me, it is like a foreign language. But with her, she has done the research, she is on top of it, and she is able to understand everything and be fully functional for my Dad. What a blessing she is.

The kids, are doing ok from what I gather. I haven't been with them for most of the day today because we have been up at the hospital while they were at school etc. I think they are scared for the worst, and want to have normalcy wherever possible... but that is hard.

We are hangining in there and trying to do the best that we can. We are so grateful for each of you. We have felt of your love and your prayers. Thank you for your Christlike service and example that you have shown each of us. You have helped us want to be better people, and to love more fully.

I will keep you posted on any news of improvement or otherwise.

Love,

Jon

Art Therapy

Some of you may not know that Harold has a Bachelors of Fine Arts degree in Sculpture from Brigham Young University. He is tremendously talented and this was his first love. He actually tripped over this talent on accident. The story behind this discovery is quite funny.

When Harold was a Junior at Issaquah High School in 1978 he participated in a prank during Homecoming week directed at the Senior float. The subsequent discipline was "in school detention". The administration assigned him to spend his detention time in an art class. He began toying around with the clay and soon he was sculpting non stop. He was commissioned by many local arabian horse associations to create sculptures of their beloved prize winning horses. This created income for him to pay for college AND subsequently was awarded an Art Scholarship to BYU!

After graduation he won the Best of Utah show and his works were highlighted in galleries in New York, Chicago and Scottsdale.

In 1859 Florence Nightingale, the founder of modern nursing, wrote that "Beautiful objects and brilliancy of colour are actual means of recovery."

Modern practitioners of art therapy agree, and believe that recovery from a huge variety of ills, both physical and mental, can be aided and accelerated using the therapeutic powers of art. Anxiety and depression in cancer patients has been reduced. Brain recovery patients have particularly benefitted by art therapy.

Harold is unable to work right now due to his medication reactions, which is particularly frustrating to him. As many of you know, he is somewhat of a Type A personality...very driven, work obsessed and has the inability to "relax". (Try going to Hawaii with him! I just want to get lost with a book with my toes in the sand....and he is renting sail boats, hiking, planning adventures)

So, because of Harold's inability to work we are creating an Art Studio in our home this week! I am really excited about this (probably more excited than Harold at this point). But I believe he will love this! I called our good friend Kent Barton who has an amazing art backround and asked him if he would come down and get him started. He and Anne Marie were so great to immediately jump on this idea and generously be willing to come to Alpine and spend the day with Harold to get him set up and going!

It is heart wrenching to see Harold try and find meaning to his days. Because he is unable to get up and go to work and provide for his family as he loves, he is sad and frustrated at times. He wakes up in the mornings and says, "Di, I have to know what I am to do with my life...with my days. What is my purpose and what can I do?"....Hopefully this will provide a new focus and regeneration of what he found so much joy and pleasure doing in his youth!

So stay tuned....I can hardly wait to see what he will create!

Love to All!

Di

Half Empty or Half Full?

We are so appreciative of everyone's love and support for Harold. The purpose of this blog was (and is) to communicate accurate information to our friends near and far. Something interesting has happened along the way. I continue to get calls from friends telling me the information that is being communicated is confusing. Some are concerned that Harold's condition is very serious. Some are expressing, No....he is doing great!

The question begs to be asked is "How is Harold really doing?" Followed by, what are the Lefrandt's trying to communicate.

So, let me try and be a little more succinct. Harold's condition is very serious. He has multiple brain tumors. They are very malignant and aggressive. His prognosis is poor at best. Meaning his chance for long term survival is very low. Many might ask, "How long does he have?" We as a family have consulted with doctors and have a pretty good idea of what our best case...worst case scenario is. And it is not good. We could lose him today. We could lose him in 9 months, 12 months, who knows?

As we discussed how to communicate this to our friends and family it became of great importance to us that we do not put "time limits" on the Lord. We did not want to have people saying, "I heard he only has ___months, or years" etc. We feel very strongly about our faith in the Lord and that he expects us to do cheerfully everything that lies in our power and then "stand still" and wait upon him to reveal his plan for us.

I am an optimist. My father was the eternal optimist. I am also a realist and believe I don't have my head in the sand. I have a very clear understanding of our new reality. But, for me the glass is always half full.

Is the glass half empty or half full? is a common expression. We know that this question helps demonstrate that a certain situation can be seen in different ways depending upon one's point of view and that there may be OPPORTUNITY in the situation as well as TROUBLE.

The kids counsel me all the time, Mom, you have to get the hard cold facts out there because we need people's prayers. And so when we wrote the first entry in this blog we gave many sobering details. But many of you have read the optimism. We appreciate that. We are celebrating our successes, however small in this battle right now.

The glass is half full.....there may be opportunity for success. The glass is half empty...there has been and may be more trouble ahead. Please know that we are fighting for Harold's life. There is no question about it. We almost lost him ten days ago and we are not anywhere close to being out of the woods now. But the glass will always be half full for us. We want to do all that we can with cheerful hearts and know that whatever comes our way in the end we are loved by the Lord and have had the great opportunity of having Harold this great man, husband, father, son, brother, uncle, friend in our life! We believe that he is ours forever!

And so, we will post our successful days. And just as soon as we post them things may take a slide downhill a bit. We are having good days and bad days. We are so thankful for your prayers. We need them! We are praying for a miracle here. We may get it in the answer that prolongs Harold's life. And we may surely get a miracle in an answer that is not what we would have desired for ourselves. We know for sure that with faithful hearts we will see a miracle in all of us as the process of this experience will change us!

"While we may not be able to control all that happens to us, we can control what happens inside us." --Benjamin Franklin

We love you! Diane & Kids

Today Is A Good Day!

Well, today is a good day.  Harold had appointments at the Huntsman Cancer Institute.  He is doing amazingly well and had the strength and energy to endure a very long day (7 hours) of appointments and waiting.  These past seven days since his first Avastin infusion have been extremely exhausting.  But we must be making progress.  He used to say last week, "It takes so much effort to stay alive.".....these past few days he says, "It takes so much effort to stay AWAKE."  And then the fire kicks in and he says, "I have GOT to get better."  

We have giggled and laughed as he can't believe how much effort the simplest of things take. His sense of humor is alive and well and we are loving it!    His goal for the week is to go fishing on Friday with family.  We are waiting for lab results to help us create a natural energy plan tomorrow!  We can hardly wait.  Oh, the things you take for granted!

We want to express our love and gratitude for so MANY wonderful friends and family that have just enveloped us and lifted us up.  In addition to the notes on this blog we receive so many emails and phone calls.  We feel your prayers and really, that is the most powerful thing anyone can do.  It is a very tangible feeling to be strengthened and supported by the prayers of those that love you.  

"Nothing penetrates the human heart as does a personal, fervent prayer and its heaven-sent response"   ~Thomas S. Monson

Thank you again!   With Love, Harold & Diane

This is where we are today...

In March 2005 Dad was diagnosed with a Grade III Brain Tumor (Anaplastic Astrocytoma).  After Dad's diagnosis, surgery and treatment he was "cancer free" for 2 1/2 years.  In September of 2007 he was diagnosed with reoccurrence and started a new chemo treatment plan.  The Temodar treatments were successful and we were without any "measurable tumor" in January 2008.  Dad remained on the Temodar as a maintenance plan until June.  The Temodar treatment is great as far as Chemotherapy goes and Dad has been able to live a very comfortable life.  He works 9 hour days, skis with the kids on the weekends and can enjoy life very comfortably.

This past June we were surprised to see that the tumor was breaking through the Temodar treatment and re-growing.  We decided to move forward with a second Craniotomy and remove the tumor.  This gave the doctors the ability to surgically remove the cancer cells from a portion of the brain we were not able to reach in 2005.  The "awake craniotomy" was VERY successful and the doctors were extremely optimistic and very pleased.  

Ten days ago our Neuro Oncologist was very enthusiastic to tell us that the pathology report came back very promising.  The tumor tissue now tested as a completely different type of tumor and in fact a "better tumor" (there is such a thing).  They believed that we always had this tumor type and that it was misdiagnosed in 2005.  So therefore, we now had a Anaplastic Oligodendroglioma.  Which has a better survival rate because of its better response to treatment etc.

This past week has brought a lot of surprises and changes. Dad started experiencing equilibrium problems and his motor skills were diminished.  As this escalated he was admitted again to the Huntsman and the doctors ordered an MRI.  The MRI revealed some very serious concerns.  The tumor cells have now expanded beyond the original surgical cavity and are blocking the Cerebral Spinal Fluid. It is apparent from their size that they are very aggressive.  The rate of growth in four weeks is alarming.  One smaller tumor is blocking the 4th ventricle.  This is very serious and life threatening.  

The doctors immediately administered steroids to reduce the inflammation and a drug called Manitol that dramatically drains the fluid away from the brain.  There has been alot of debate on whether they should surgically install a shunt in the brain to do a number of things.  Mainly to increase the flow of the spinal fluid and inhibit the tumor blockage.  Secondly, the ability to debulk the larger tumor that has grown in addition to this smaller tumor.  The concern however is that this larger tumor is too closely involved in the motor skills function area of the brain.  The largest hesitation for the shunt surgery is that it will interfere with the chemo treatment plan.  The drug that is the first line of defense for this tumor is Avastin.  Avastin cannot be administered for four weeks after surgery because of the irritation to the surgical wound.  The opposite is also the case.  If we start the Avastin we cannot undergo surgery until four weeks after it is stopped.  This chicken vs the egg factor has been a dilemma.  On Monday the Neuro team decided to watch Dad for 24 hours and see if the fluid reduction and the steroids can improve his abilities.  If so, then we would decide to move forward with the Avastin and postpone the surgery option.  

And so a priesthood blessing was given and specific prayers were now offered to help us understand which option was best.  If Dad improved dramatically we could then know not to go forward with surgery.  If not, then we would consider surgery.  Yesterday morning was amazing.  Dad woke up with a bang!   He suddenly could walk, talk and utilize his right and left sides almost equally.  The Neuro team was in the hallway reviewing another patients charts.  Our friends were taking Dad on a walk. Dad being the "type A" personality that he is and combined with the steroids went charging by the Neuro team!  They were dumbfounded and amazed and very happy!  They later came into Dad's room and said, "Well, we believe we should move forward with the Avastin and postpone surgery".  We are so glad the Lord helped us make that decision so easily because the surgery option seemed so daunting and we were struggling with what was in Dad's best interest.  

Dad is now back on the Decadron steroids that we have worked so hard to avoid since they cause him to be manic.  Well, so far so good. Dad is on four times the dosage of steroids he was on in 2005 and he is stable and doing well.  No Mania!  His dramatic progress in the last 36 hours has earned him the blessing of going home today!  We are thrilled that our prayers have been answered.

As many of you can imagine, Brain Cancer is tough!  Dad is in a very serious and delicate state right now.  Our hope is that the chemo treatment will reduce the size of these tumors.  When these lay dormant and come back they often come back with a vengeance.  We are certainly experiencing that now.  Dad's prognosis is not as hopeful as before.  What we do know now is that his current treatment has had great history of success over a six month period of time.  That is all we know.  After that we move into a new territory of uncertainty and other treatment plan options.  We are just taking it one step at a time.  This disease has a mind of it's own.  We remain positive and prayerful and trust in the Lord.  We know the Lord helps those who help themselves and all of us, especially Dad, are working hard to do all that we can.  There are no promises.  Only the opportunity of exercising all of our faith and prayers and utilizing medicine to the best of it's ability.  That we can do!

Our family has selected a scripture that strengthens us and expresses succinctly our faith and plan:

“Therefore, dearly beloved …, let us cheerfully do all things that lie in our power, and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed.” Doctrine & Covenants 123:17

We love you all and are so grateful for your faith and prayers.