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Make Sure Joel Is Not Alone This Holiday Season

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Joel’s Story

IF YOU ARE NEW TO THIS WEBSITE, PLEASE SEE THE TIMELINE HERE IN "MY STORY" FOR A QUICK SUMMARY.



Check out our pictures in the Photo section and be sure to read the captions!

Also, please read the JOURNAL for recent activity, and sign the Guestbook! Joel LOVES to read them.


08-04-09 Surgery to remove initial lump on right side of Joel's neck.


08-06-09 Diagnosed with melanoma cancer INSIDE the body in a lymph node, stage 2 cancer.


08-27-09  Had a “Modified Radical Neck Dissection” where they removed 30 more lymph nodes. No cancer found in any of them. Joel was placed on Short Term Disability, began paying COBRA payments for family health coverage. Converted life ins policies to private, began paying for them.

Sept. 2009 Had a port surgically implanted in chest.


Sept. 2009 Began Interferon, an aggressive treatment that caused horrific illness. It was given via the port for about 2 hours every day, Mon-Fri, for 4 weeks. Then Joel had to go to the hospital 3 days/week for another 11 months to get Interferon shots (lesser dosage). He remained very, very ill the entire time (5 months or so).  They thought he was going to die.  We did too.



09-30-09 Joel was terminated “involuntarily but in good standing” from his employment of 7 years.


Oct/Nov 2009 Port was surgically removed.

Nov. 2009 Joel was changed from Short Term Disability to Long Term Disability.

Jan 2010 COBRA ins coverage increased from $235/mth to $900/mth for a family!!

02-01-10  Joel is place on Social Security Disability Income.  How sad, how humbling.

02-09-10 Joel’s PET Scan showed the cancer had spread to 3 places in his brain! What a shock! He was told he could not drive because he was now susceptible to seizures.  Joel is now "stage 4, terminal" and we are horrified.

Feb/March 2010 Joel had “Full Brain Radiaion” for about three weeks (14 treatmnts) in Fort Wayne.  He began taking steriods & started quickly gaining weight. He became incredibly ill with spells, vomiting, headaches, fever, chills, and more. Radiology nurses & doctors could not tell us why.

March 2010  Kimberly called the Mayo Clinic in Rochester, MN. They made appointments to see Joel one week later to see if they could help.

03-28-10  Drove to Rochester, MN, ten hour drive one way. Joel had seizures off and on the entire drive. Driving through Chicago was  terrible.

03-30-10  Joel missed his appts at the Mayo Clinic because he became so ill, while standing IN LINE for first appointment, he had to be rushed to the ER!!  He was admitted to St. Mary’s Hospital (a Mayo hospital) on a Tuesday. They began many tests over the next few days.

04-01-10 Dr. Lachance, a neurology-oncologist, came into Joel’s room around 5 pm on Thursday and advised that 2 of the 3 tumors could be surgically removed. AND that they had an opening the very next morning at 6:30 am! They would cut Joel’s skull in 2 places and surgically remove the 2 larger tumors. After praying, Joel decided to go ahead with the surgery the next morning…which happened to be Good Friday of Easter weekend!

04-02-10 Joel was gone from about 6:30 am to 4 or 5 pm in surgery and recovery. We saw him for about an hour afterward but he didn’t really know who we were. He was in ICU for 24 hours.

04-03-10  Jadyn and I spent most of the day with Joel.  He was in ICU until the afternoon, then moved to a room on the neuro floor. Not a great day.  Joel has never been able to remember any of today (or yesterday).  That's probably a good thing.

04-04-10 Easter Sunday, Jadyn and I found a church and went, then spent the remainder of the day with Joel in the hospital. We had no family for friends with us, we were 3 states away from home. Joel was not himself, which is understandable.  He just had his skull and brain cut into.  Not a good day.  Joel doesn't really remember this day either.

04-05-10 Monday - Joel released from hospital only three days after brain surgery...into the care of Kimberly.  VERY frightening for all involved.

Apr 2010 Stayed in MN for several weeks. Joel had many appts over the next week w/various Mayo doctors for follow-up after the brain surgery.

Apr 2010 A couple weeks after surgery Joel had gamma-knife radiation on the third tumor in his brain. He was released to drive home the next day. Joel could not drive until he was seizure free for 6 months, so Kimberly did all the driving.

May/June Various appts with oncologist in Ft. Wayne.

June 2010 Our friend Jim-nasium drove us to Mayo Clinic again for tests & an 8 week follow-up. All looked good inside Joel’s brain. Cancer had not spread.  PTL!

June/July Various appts with oncologist in Ft. Wayne. 

Aug 2010 Drive to Mayo again for 8 wk follow-up & tests. Cancer spread to brain. Did nothing at this time, but we are to return to Mayo again in eight weeks for follow-up.

Aug/Sept Various appts. w/oncologist in Ft. Wayne.

Oct 2010  Drive to Mayo again for tests and follow-up. Cancer in brain grew, so they performed gamma-knife radiation on it.  To return in 12 weeks.

Jan 2011  Jim-nasium drove us to Mayo again for follow-up.  Minnesota had SO MUCH snow we couldn't believe it!  Sadly, Joel's cancer spread to 8-10 places in body.  Sent us home to continue usual treatments.  To return to Mayo in eight weeks to see if treatments were helping.

Jan/Feb 2011  Various appts. w/oncologist in Ft. Wayne.

Mar/Apr 2011  To Mayo again for tests & follow-up. Cancer spread 12-15 additional places in Joel's body. Makes a total of approx. 25 tumors so far. Some large, some small.  Some we could see sticking up out of Joel' skin on his neck.  A 5th tumor was found in brain, gamma-knife done again.

Mayo Clinic told us of a drug (Yervoy) not available yet in the USA that was specifically for Joel's cancer.  We began working on seeing if we could get it in our hometown.


04-27-11 Indianas NewsCenter did story on Joel and the new drug Yervoy.
Joel was first in Indiana, and among first in USA to use Yervoy treatment.


4-28-11 Joel was the first in Fort Wayne to receive Yervoy.  Today was first treatment.  News reporters went with us.  Overwhelming, yet exciting.  Watch our news stories at  www.indianasnewscenter.org">www.indianasnewscenter.org">www.indianasnewscenter.org and just type in Joel Saunders in their search engine.


07-03-11 Joel hospitalized for EIGHT days due to terrible side effects from Yervoy. He was horribly ill.
Even though Yervoy had nasty side effects, it was supposed to shrink the larger tumors and possibly make some of the smaller tumors go away.  We could only hope and pray for the best.



08-04-11 Joel had a full-body PET scan. He was miraculously declared cancer free!! The cancer throughout his body was gone! Joel was in remission for now. The doctors DID NOT expect the Yervoy to do this. Check out the very first date in this "My Story" section, it was 08-04-09.  Today is 08-04-11.  We found out Joel was cancer free exactly two years to the date from his first surgery!! We give God ALL the glory for ALL good things!

Aug 2011 - Aug 2013 Over past two years, Joel had many problems such as memory loss, balance issues, speech issues, motor skill problems, shaking voice, depression, a few seizures, and so much more. Regular visits to oncologist, neurologist, and to primary care physician during this time for medications, PET scans, and MRIs on his brain.

Even though cancer free, Joel is still considered stage 4 terminal and will never return to work.  They expect the cancer to return, become even more aggressive, and take his life at an early stage.  And what do we do?  We praise God during both the good times AND the bad times!

Spring 2013  Social Security Disability people decided that because Joel has no active cancer in his body, that he can go back to work!  Crazy people!

Summer 2013  Had to hire attorney to represent us against Soc Sec Admin.  Things look bleak.  So we are going to Mayo again to get Joel specifically looked at.  Hopefully, those reports will show Soc Sec Admin that Joel is disabled from his treatments, and surgeries, radiation, etc. 



08-05-13 Spent another week at the Mayo Clinic. Joel had many tests and has a great deal of problems due to the full brain radiation, interferon, yervoy, brain surgery, etc. Joel has been diagnosed with progressive dementia. 

Joel has brain atrophy (natural shrinking and shriveling of brain usually due to old age) and his brain is comparable to that of a 70 year old man. He is only 48 now.

He also has an adrenaline insufficiency and wears a medic alert bracelet. He still suffers from all of the previous problems.  But, we are grateful to the Lord that Joel is still with us, that's the most important thing of all!

Sept 2013  WE WON!!  Unheard of, but we won't against Soc Sec Admin.  It's because we are honest, and we have God on our side!!! 



12-20-13 We receive the results of Joel's full-body PET scan. Joel continues to be cancer free! It has now been two and a half years! The doctors are stumped! But WE know that God is SO Good and we give Him all the glory for Joel being in remission!

02-01-14  Joel had a seizure and we took him to the ER this morning.  They performed tests, kept him overnight.  Kinda scary because he hasn't had any serious "problems" in such a very long time.  PTL for that!

02-02-14  Superbowl Sunday - Joel is itching to get out of the hospital!!  After having an MRI on his brain, some more blood work, and seeing three doctors....they determine that the seizure was from a change in medication five days ago which lowered his thresh-hold again seizures.  He is being weaned off that medication and onto another. 

Praise God that Joel was released and we got to leave just in time to watch the Superbowl game in the comfort of our own home!  God is so good!

FUNNY SIDE NOTE:  We recently realized that Joel has been in the hospital on April Fool's Day, Good Friday, Easter Sunday, Father's Day, Fourth of July, Superbowl Sunday, and Groundhog Day! 

Website written by Kimberly K. Saunders


Latest Journal Update

MEDICAL UPDATE & MISC.


Deuteronomy 31:8 says, “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not beafraid; do not be discouraged.”

 I’m past due in getting an update posted for all of you.  Many people have asked me in the past few weeks how Joel is doing. 

 Hmm….how do we answer that?

Joel is doing the same in some areas, not as well in others.  He and I have talked about his memory being noticeably worse.  He says that he does not feel “the way he used to” inside his head or mind.   We know that progressive dementia is one ofthe things he was diagnosed with at the Mayo Clinic last year, and we are very grateful that it’s been a slow progression. But, simply put, his cognitive skills are declining.

Joel has noticed (as have I) that he has more problems with handling little things lately.  For one example:money.  Not only does he have some problems counting out the correct amount, but the actual handling of the money.  His fingers and hands don’t work the way they normally should, and that is also getting worse.  He has difficulty with small items in his hands, in general.  

Joel loves to help out at church with various tasks when he can.  This is his month to fill the communion cups before each Sunday. Sadly, he’s noticed he has begun having great difficulty in the handling and filling of these tiny cups. 

His extreme fatigue is often aggravating to both of us.  There are many things that Joel wants to do around the house or the yard.  But it seems that he will do something as simple as pick up some groceries in the morning, come home and eat lunch, and then he seems to have to take a two or three hour nap before he can even attempt do anything else.

If he tries to resist the desire to nap, he will usually fall asleep at four or five in the afternoon. He will actually sleep for two or three hours, get up for a couple of hours, and go to bed again and sleep all night. He feels like he never has enough time to get things done.  He no longer has the strength or stamina to perform average tasks anyway.  The poor guy is so frustrated as you can imagine. I don’t always express it well, but my heart goes out to him.

These are just a very few of the many problems Joel is dealing with.  But we are not complaining.  On the contrary, we are grateful to have had this time together as a family.  We feel blessed most of the time.  We do get on each other’s nerves upon occasion. You would too if you spent 24 hours a day,7 days a week,  with your spouse, never knowing what each day will bring, and doing this for five long years in a row!  Imagine that.

 Life is not easy. Life often stinks big time for all of us.  Seriously...take a minute and imagine your husband losing his job, and becoming permanently disabled.  Now imagine spending all of your 401K, all of your savings, and even your checking to pay the relentless medical bills that seem never-ending.  Imagine the humility of living on social security disability income, and depending on others to help you pay your monthly bills, again this has been for several years now.  Then think about having to sell items from your home to make money to buy gas or get groceries.  The stress is unbelievable and effects all three of us.  Imagine having to get food from a food pantry every month for years.  It's embarrassing.  Imagine both you and your spouse suffering through depression and being placed on anti-depressants, and in turn having to seek counseling. 

Picture swallowing your pride and having to ask for help, repeatedly, for several years, because you have racked your brain and cannot come up with any other answer to the current problem.  Then realize that you are stuck.  You cannot get a job outside of the house and bring in any income, not even part time, because you and your child will immediately lose your health insurance.  You live below the poverty line, yet you bring in just enough that you barely qualify for much assistance at all.

Imagine frequently sobbing and wondering when all this is going to end. You often feel demeaned, humiliated, downtrodden, and your spirit and your heart are both broken. At times you feel like your marriage is just as broken.  But to have all of this “end” and return to a normal life means….what? That the cancer returns and your husband dies?  I cannot imagine that.  Certainly something else could make this silent and slow nightmare go away, right?  Of course, then guilt smacks you full-force right in the face and you carry it around with you every day, deep inside where nobody else can see it. 

All of that is our current life. Not to even mention all the medical problems from the beginning, the brain surgery, other surgeries, radiation, chemo, hospital stays, etc. 

Can there ever be a good enough reason for going through all of this pain?  Could there possibly ever, ever be anything good that could come out of this situation?  Could a person even find anything to be happy or joyful about during these long months, and years, of feeling like your lives are spinning out of control?

Why yes, yes a thousand times YES there IS a reason for all of this!  And YES, countless good things can, and will, and have repeatedly, come from this painful season of our lives!  

Fortunately, we trust in the Lord with all our hearts!  Leaning on our Rock, Jesus Christ, is the ONLY thing that continues to carry us through this murky, mire-filled path that we are walking.  And when we think about it, Joel and I know beyond a shadow of a doubt that we still have much more than so many others out there.  Even through all the struggles we feel so very blessed!

The reason Joel and I are going through this?  We don’t know.  But God certainly knows.  We may possibly never know all the reasons we are traveling through this valley.  We don’t have to know the answer.  But we are very aware that God is in control of our lives. And we give Him control of our hearts. We trust in Him, serve Him, and put Him in the center of our lives and our marriage. 

HE has carried us through every single minute and hour over the past few years. He will do the same for you.  HE will never leave us or forget us!  This is His promise!  (Read Deuteronomy 31:6-8 for more on that.)

Sure it’s been painful and life has definitely not turned out the way Joel and I imagined it would. But God is here with us!  We know this, we see Him at work in all kinds of situations, and we feel Him in our lives!  We feel His comfort, and the peace that transcends all understanding.  We feel Him now, we felt Him yesterday, and we will feel Him in our lives tomorrow. We are content.

Could there ever be anything good to come out of this?  You have no idea how much good has already come out of the struggles we have gone through.  Joel and I, and even Jadyn, have had countless opportunities to share out story along with our faith since Joel was diagnosed with cancer.  We've had  innumerable occasions to inspire hope and encourage others! 

We have also received SO MANY blessings, too many to even count!  But we acknowledge them and are deeply grateful for them.  We have met many, many others who are suffering in some kind of way, not always medically related.  We’ve been able to comfort and encourage them with empathy.  Because we know and understand what it’s like to go through. 

What about joy? How in the world could anyone have joy while going through this anguish and stress?  If you really know Jesus then you know the answer to that question! Having a personal relationship with Jesus Christ, our Lord and Savior, is the ONLY way to have an everlasting joy in your heart.  And having to live on disability? Well, we are very thankful to have it.  Having to go to the food pantry monthly?  We're deeply grateful it's there and available!  Having to depend on others to help with gas, groceries, or medical bills?  We are thrilled that the Lord loves us SO MUCH that He places people in our lives who have a heart to help others in this way!! 

No matter our daily circumstances Joel and I have had that continued joy during these past several years!   The sadness, the crying and sobbing, the humiliation, the pain, the fear, the embarrassment….it’s all temporary.  It goes away.  It’s the human-ness in us that we all have and we must all deal with. But let me tell you, it is NOTHING, absolutely nothing, compared to the Love and Joy we have in Christ!!  His love outshines the shadows of a life of despair...every...single...time.  He IS Love!

Are we complaining about the life we’ve been given?  Again, I say NO!  I’m trying to make a point and want to remind you, because I’ve said this many times. No matter what type of cards life deals our way, we CAN all be happy, be filled with JOY, and rejoice DAILY!  Sure, Joel and I feel sad and get discouraged once in awhile.  But the joy of the Lord is our strength and we ALL seriously need to work at keeping our focus on Him. Read I Peter 5:10-11 NIV.  HE makes us strong, firm, and steadfast. We like to call that GodStrong (a nod to Jon S. who coined that term).

So, if YOU are going through some kind of trial or tribulation that has you down and wondering if things will ever get back to normal….just turn to the Lord for your Deliverance.  Give it all to Him, all your pain and sorrow and suffering.  Cry out to Him.  He will hear you!  He is there for you, He loves you, and He WANTS you to come to Him and give yourself to Him. 

The answer to the difficulties in life that we all face, is simple. 

It’s Jesus Christ, He is the answer!

Serving Him in Love and Joy,

Kimberly

Psalm91:14-16 (NIV)

14 “Because he loves Me,” says the Lord, “I will rescue him;
    
I will protect him, for he acknowledges My name.
15 He will call on Me, and I will answer him;
    
I will be with him in trouble,
    
I will deliver him and honor him.
16 With long life I will satisfy him
    
and show him My salvation.”