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In Honor of Joel D.

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Joel D.’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

JOEL'S MEDICAL UPDATE

The good news is that Joel is finally, completely, and entirely off steroids!!  They stopped the pills in April, and we certainly praise the Lord for this long-awaited event!  Joel was on steroids for over five long years and they have done some irreparable damage. It took well over a year for the doctor to slowly and meticulously taper off that medication.  But it finally happened and we are deeply grateful to Jesus for this blessing! 

One positive outcome from no longer taking steroids is that Joel has lost some weight – a little over 20 pounds so far!  He is working at keeping the weight loss going and I’ve joined him. We’ve been eating healthier and walking quite often.  Joel cannot walk as fast or as far as Jadyn and I do, which is to be expected. I've even had to jog back to the car as quickly as possible to go and pick him up to take him home because he sometimes gets so exhausted and feels sick.  So we are taking is very slowly for him.   

For a couple of years Joel has been wearing a Medic Alert bracelet for adrenal insufficiency which (in his case) has to do with his pituitary not working properly due to the radiation, surgeries, etc. that his body has been subjected to.  This can affect various functions in the body.  We thought that with him being weaned off the steroids he might be able to discontinue wearing the bracelet.  The doctor thought this as well, at first, but after submitting to a very comprehensive test at the hospital, they discovered that Joel still has the adrenal insufficiency and therefore needs to continue wearing the bracelet as a precaution.  

Only time will tell if his body will naturally take care of this adrenal problem.  And there is a possibility that it can happen.  It is not something that the medical professionals can correct.  Joel will be having that in-depth testing done at the hospital again within the next month.  They will then have a comparison to see if the body is correcting itself in that aspect.  We will keep you posted.  

The “not so good” news is that Joel had a talk with me one night last week to let me know some things that have been bothering him.  He has realized that his memory is noticeably worse, he has increased struggles with words and thoughts, and he has also advised me that he needs Me to begin driving more often.  Wow, the driving thing sort of freaks me out, but I admit that it’s not unexpected.  

For quite a while now Joel has had issues with formulating thoughts and then getting the words out of his mouth.  Again, this is a direct result of the full brain radiation, and possibly the gamma-knife radiation, among other treatments he received.  Probably even from the brain surgery. Lately he has struggled even more with using the right words in a sentence, and also just pronouncing some words correctly.  After trying several times he may or may not get it right. There are other times that he uses the entirely incorrect word and doesn’t even realize it.  I correct him sometimes, other times I do not.  It’s frustrating for him so I need to work on not correcting him anymore.  Please pray for me in this area.  

The neurologist made arrangements in April for Joel to have in-depth testing done locally (similar to what was done at the Mayo Clinic the last time) to check his memory, cognitive skills, thought reflexes, and more.  Sadly, the testing didn’t happen.  We discovered that the doctor they set us up with is “out of network”. There aren’t that many places in the immediate area where this exact type of testing can be performed.  I really need to find someone in-network and get that set up again.  

As far as Joel’s driving goes, I have noticed for quite some time that he makes mistakes while driving, although nothing that has put us in serious danger.  He may turn the wrong way, or he can’t remember how to get someplace, and he has pulled out in front of other vehicles a couple of times.  His judgment seems "off".  He’s told me in the past that he has forgotten where he was going while driving.   

Just a couple of days ago Joel ran an errand to pay a bill - to a place he has been before.  He called me about 30 minutes later (he should have been done and about home by then) and asked me where the business was.  He absolutely could not remember at all and had been driving around trying to find it.  He was on Coldwater Road and was supposed to be on Clinton.  These incidences really upset him, to say the least.   And of course that's understandable.

Both Joel and I would like to ask for your prayers, please.  The unwanted and unwelcome Deceiver and Father of Lies constantly uses our current circumstances and twists the truth to place a barrier between me and Joel.  Depression, frustration, and bitterness are “adversaries” we don’t want to have in our lives any longer. We always seem to be working on this....on our attitudes and outlook, and our behavior.  It's mentally and emotionally exhausting.  It just seems SO SO SO difficult lately.  At times we feel like we are dragging our feet through thick sludge and moving in slow motion.  

Please pray for us, for the strength to unwaveringly focus once again solely on our Heavenly Father.  We do understand that the Lord loves us unconditionally, and that He has a plan and a purpose for us.  We are His willing servants and we are open to all we are being taught during this season of growth.  But we are oftentimes weak and we stumble (and grumble).  We pray that when we see the pierced hand of Christ reaching down to pick us up as we fall, that we will grasp it quickly and tightly.  Please pray that we will persevere, as James advises all of us to do, so that we may be mature and complete, not lacking anything.

We are praying that our feet will remain firmly planted on the straight and narrow path the Lord has us walking, no matter how wearisome that path may appear (to us). And as always, we will strive to focus on the positive things going on with Joel, and in our lives in general, and not on the negative.  So many of you ask about how Joel is doing, and we feel the need to share the negative along with the positive, in order to give you an accurate picture. Thank you very much for listening, and for your prayers. Love to you all.  

Serving Christ, 

Kimberly

p.s. As always, I have Joel's permission to post everything in this journal entry.


Comments

2 Comments

Doris Rigsby
By Aunt Doris
Kimberly I am so sorry for all of these things. I know what it is like to try to cope with someone who has the problems with someone having memory problems and the worry it brings. Joel is wise that he shouldn't be driving - at least at this point. He can't be living a very satisfactory life right now. Is it OK of I put your family on our prayer chain at church?
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Gary & Kathy Martin
By Gary and Kathy Martin
Kimberly, Kathy and I will continue to pray for you, Joel and Jadyn during this most difficult season. Thanks for the helpful updates and please let us know if there is anything we can do (besides prayer, of course).
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