If you are new to Joel's story, please read the Timeline here in "MY STORY" for a quick summary.
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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 chestSept. 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 (http://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 Administration. 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!
August 2014 Made our 7th trip to the Mayo Clinic. Stayed about two weeks and they performed extensive testing on Joel in many areas. Their findings showed that Joel has declined in many areas. This includes the dementia, the brain atrophy has worsened, cognitive skills, serious hearing problems, balance issues, and much more. He still suffers from severe obstructive sleep apnea. He also has pituitary issues and wears a medic alert bracelet for adrenal insufficiency. They taught me how to give Joel shots in the event it was ever needed. He has thyroid issues.
2015 - 2016 Joel continues to regularly see his oncologist, neurologist, pulmonologist, and especially his family practice doctor who organizes his medications, visits, etc.
Feb - March 2016 We made our eighth trip to the Mayo Clinic. Again we stayed for about two weeks and they did extensive testing on Joel. They again discovered that Joel has declined in many areas. Joel began speech therapy and physical therapy which helped a little bit. He continues seeing all of his doctors regularly. He has regular blood work, PET scans, and MRIs on the brain to check for any returning cancer among other things.
2016 thru PRESENT (2017)
Joel has not had a hospital stay or emergency room visit. He does suffer from all the same issues as mentioned above. None of them are "curable" but they can be managed to an extent. The dementia (memory issues) and brain atrophy will continue to decline.
Website authored by Kimberly K. Saunders