Wednesday, July 30, 2008

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.

21 comments:

tam & eric battles said...

Jon this was so sweet for you to put together, you are such a great blessing to your dad at this time and i am sure he appreciates your Priesthood and how you are supporting your fam! Thanks for the update and know your fam and especially your dad are in our prayers!

Kari said...

How blessed we are to have the gospel in our lives. So many memories came back as I read about Uncle Harold. I know how hard this time is for your family. You are all so strong and will be blessed with strength to endure this hard road. We love you so much.

Hadmonster said...

Thanks for the update Jon. I have been thinking a lot about you these days, Uncle Harold. I love you and my prayers and my family's prayers are with you and your family at this time. You are an awesome influence on us all. I am so grateful for your example as a strong man and your testimony.

Jared said...

Jon,
Thank you so much for taking the time and energy to post Uncle Harolds update. I am so happy for the successes that the Lord has seen fit to grant during this process. I believe that there is great power in recognizing his hand in all things. Please let Harold know that my many prayers are with him at this time. Your family are all tremendous examples to me. Thank you for the scripture. As I read it, it rings true in my own life. We love you Harold.

Gary Folkman said...

Harold, Diane and family,
Thank you for the update. Please know that you are in our thoughts and prayers. You are examples and heroes to us all.
Harold keep up the fight, your attitude has been amazing. Keep it up!!!
We love you and pray for you daily.
Gary, April & family

John Misner said...

Jon, Your words and wisdom is beyond your years. We are all blessed to have you share this with us. This fight is long and hard, but I know the strength of your family will carry on to see it through. Your family and the doctors caring for your dad are in the prayers at the Misner house.
Love to all of you, John

tiff and chris johnson said...

Jon you are truly an angel-your father could not be more proud of his children, that I know for sure! Thank you for finding a great way to keep us all in touch and up-to-date! We are fasting and praying for you guys and know that this is in the Lord's hands. I'm grateful our family is so close so we can help bear each others burdens in these hard times. We are all here for you! Love you so much! xoxo

Kailey said...

Harold, Diane and all the kids,
We love you guys so much! Thanks for the update on your Dad. You have been in our thoughts and in our prayers. We are praying for your continued strength and faith. You have been an incredible example to all of us. Know that you can lean on your friends and family. You have an amazing support system.
Love to you from the Glausers

Debbie Richmond said...

Jon, that is indeed a wonderful tribute to your Dad. I love your parents and have known your Mom for years. We as a family will pray you all as a family that the Lord will comfort and protect you all!

Nana Shanna said...

Hi Jon and family-Thanks so much for putting this together so we can get the information and facts straight from the source. Isn't the gospel wonderful? I love your scripture. You are all in our prayers.
Shanna Miller

Alex and Heather said...

Our thoughts and prayers are with you all. We love you and are so grateful for your examples of perseverance and faith. How blessed we are to have the gospel to help us through this fight.

Kass Martin said...

I'm so sorry for all the trials for your family. It must be hard. We will keep you in our prayers and thoughts. God bless you and your family.

Breanna and Martin said...

Thank you so much for the update. Your family is so strong and it is so good to know that you know the Lord is on your side. You are most definitely in our prayers.

I love you Harold!

readerfam said...

Dear Lefrandts, thank you for updating us on all that you've been going through. We didn't even realize that things had become so serious, wish we lived closer and could run over for some hugs and tears and prayers with you guys. Thank you for including us so that we can pray and fast with you and your family. We love you and cherish all the fun, crazy, and lovely times we've shared with all of you. You are quite special and unique and a great example for our family. We love you and I (Helen) will be up there in mid August and would love to see you.
Love your scripture you chose, it's perfect. xoxo

Shannon said...

Jon, we loved being able to read about this experience. What a miracle for that prayer being answered. Thank you so much for your strength and faith; you and your family are such a strong example to us. We love you guys! Let us know if your mom or family needs help with anything--cleaning, cooking, errands, anything. We will continue to keep you in our prayers and fasts.
-Shannon & Mitch

Jane said...

Hello neighbors, We miss you all. Our thoughts and prayers are with you. You were a great example to us and the Ward really misses. I hope all goes well. Love Dave and Rae

Arlene Heiner said...

Diane and family, You are a great family and I know you will continue to receive many many blessings because of your faith. You are dear friends and our prayers are with you. Any time you want some warm wheat bread just let me know. Harold is a champion and a fighter, I have always been impressed with him in the short time we have known you and your family

Steve Balkman said...

Jon - Thanks for clearly sharing the facts with all of us. I was moved to tears when I heard about the change in Harold's condition last week while at Scout camp. We are praying for Harold and for all of your family every day. We know Harold, Diane and all of you will do everything possible to overcome this trial.

We stand ready to help in any needed way. Please know that the Lefrandt family is loved all over the world and especailly in our little corner!


Steve and Susan Balkman

Jenny and Travis said...

We love your family and will keep you all in our thoughts and prayers. Your faith is inspiring; it is so good to know we have a Heavenly Father who watches over us and knows that all things will work together for our good. --Jenny and Travis

Chas McClure said...

Dear LeFrandts we were shocked to hear the news but are so grateful for your faith and testimonies. The sweet message of love that comes across in this blog must lift your Dad's spirit. What a wonderful example of love and courage. We love you and our prayers will be with you. Thank you for sharing this with us. Love, Chuck and Gail McClure

jill wilmarath said...

Its great to hear you are doing better. Our thoughts and prayers are with you. You are an amazing family with stregth beyond comprehension. What an example and blessisng you are to all who know you.
love you all.