Their Stories

This new page is dedicated to those who suffer or have. This is why we are here…to tell you their stories, share their triumphs, remember their pain and celebrate the notion that under no circumstances do they suffer alone anymore.

McKenzie was diagnosed 2 days before her 9th birthday.

The family joined JE in 2018

Jose joined the JE family in  2018 after being diagnosed with inoperable Brain Cancer.

Lilliana in spring of 2017. A painful story.

Mya got her wings in December of 2017

Jenn Dygert meets Kamerion for the first time…

Ada has Crohn’s Disease but still makes a lot of noise to support other children who suffer.

Alayah joined the JE family in March 2017

Missy English Clarey was diagnosed in 2016…her inspirational fight continues.

 

sarah-with-dr-m

Sarah was diagnosed with Leukemia and joined the JE family in Summer of 2016.

Darla joined the family in April 2017

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Missy  and Colleen, both in treatment in 2016 are new members of the JE family.

Here they model our position that “you suffer alone no more.”

Missy’s story in her words…

“Telling my story is what gets me through all of this 🙂 I am 39 yrs old, happily married to my husband Jamie and have 3 beautiful children, Kody age 18, Emilee age 11 and Logan age 9. In March of 2016, at the age of 38, I discovered a lump. I followed up by making.my yearly exam appointment and brought my concern to my Dr. Although she was confident it was most likely a cyst, we decided that I would have my first Mammogram early, prior to being 40, as that is the general age to begin yearly screening. On April 11th, my Mammogram revealed that this was something much more serious. I had a biopsy on April 15th, and was diagnosed with Grade 3 Invasive Ductal Carcinoma, Breast Cancer. I was told that if I had not found this when I had, I would have been dead by age 40. After many tests, and more Dr appointments than I can even remember, I had a bilateral mastectomy with Tram flap reconstruction on June 3rd. Test from the tumors indicated that I had 100% chance of reoccurring Cancer if I did not have Chemotherapy. I began Chemo in July and will complete my regimen on December 15th ( if all goes well).”

 

Rockne 640

Say hello to Rockne from Pennsylvania. He has been batting Bilateral Cancer. His family is also on a mission to raise awareness with their fight and the fight of other suffering children. Please join Joseph’s Experience in supporting them.

 

Deb at RoswellDeb was a mother of two sons ages six and ten. In the fall of 2015 she was admitted to Roswell for a 100 day protocol.

In the many years we have been supporting those impacted by Cancer and Leukemia, we have never seen a multi-leumens

delivered at this level. Deb was an inspiration to us all. In January 2016, Deb lost her battle but not without an incredible fight

and not before inspiring so many of us.

 

 

Colleen Anderson 333

 

Colleen Anderson joined the Joseph’s Experience Family in the summer of 2016. Colleen is known as “Bird” to her niece and nephews. She is the proud mother of a daughter who is her heart and soul and the reason Colleen wakes each day!!! Colleen’s cancer journey began in the middle of March of 2016. “I found a lump and called my doctor, within one week I was having biopsies, scans and blood work. Followed up by more doctors visits for the diagnosis…stage 3 inoperable breast cancer… all before the ripe old age of 40!!! After the shock and tears stopped I began chemo, otherwise known as my 17 weeks of HELL!!! To be followed by my double mastectomy on August 30. Next up is 7 weeks of daily radiation and then hopefully, with all fingers and toes crossed I will be cancer free…” Shortly thereafter, two tumors were found behind both of her eyes.

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rob savannah

The Redmond family is new to our family in late 2016. Savanah was 10 months old when she was diagnosed with Retinoblastoma.

 

 

Isaiah joined the JE family with a history of dermofibrosarcomaprotuberan (cancer of the legs).  When he was 3, physicians had to literally cut into his legs and manually stretch his leg muscles. He should not be able to perform martial arts. We forgot to tell him. This gold medalist exudes what it means to be a martial artist and spends a great deal of his time promoting Scalise Tae Kwon Do school where he is sponsored, and JE.

Isaiah ax kick

 

Kari Clive was one of the most effervescent individuals you will ever meet. Her spirit and attitude was highly contagious. In 2015 Kari was diagnosed with breast cancer for the second time which has now metastasized to her brain in 2016. This mother of two was honored at the first ever Oneida County Ride for Joe; central New York’s only ride which honors those impacted by Cancer and Leukemia. God gave Kari her wings on Christmas eve 2017.

Kari day two chemo

 

Joseph’s Experience Inc. is proud to honor EMS, Firefighters, and the contribution law enforcement makes to our lives and community. Deputy Wayne Smoulcey (far left) was diagnosed with Multiple Myeloma. Wayne is also Assistant Chief with the Willowvale Fire Company; a very active partner with JE. Wayne and his wife Diane are flanked by JE board members Sergeant Dave Olney & his wife Dana Nimey-Olney.

dana dave wayne diane

Liliyana and her mother Jamie provide Dr. Montgomery an item to be carried in her honor during the ride for joe.

Liliayna is in the Leukemia fight.

 

 

A special story from a father about his son…..

 

Theoryn Maris Dygert

When Theoryn was 18 months old he was diagnosed with a Wilm’s Tumor, a cancer of the kidney.  He was rushed to Upstate University Hospital in Syracuse, New York.  He would have a major surgery to remove the tumor which would also cost him his whole left kidney.  We were told to say our good-byes as this was a complicated surgery and the outcome was uncertain.  Through the grace of God and the care of a highly skilled surgeon and team, Theoryn made it out in pretty good shape.  After a long stay in the PICU he was released to the children’s oncology ward where he would start his long recovery from the surgery.  Soon after recovery, Theoryn would start 25 weeks of chemotherapy receiving multiple chemo drugs weekly.  Chemo was terrible.   The side effects and compromised immune system would land him numerous admissions back to the oncology floor.  However, he fought hard and made it through the chemotherapy and is now in remission.

Many children go through cancer and go into remission and are labeled “cancer free”.  A nice thought, but there is no such term.  Although Theoryn has been out of immediate danger for some time now, he is faced with many struggles daily from his experience with cancer.  His immune system has never caught up to where it should be.  If he catches something it is very hard to fight and overcome whatever it is he has.  He got pneumonia and could not shake it for 8 months ultimately causing him to contract asthma.  Even a common cold could last for weeks.  Muscle and bone growth has been severely compromised and normal little boy activities can cause bad bruising or bone breaks.  Normal teeth growth has been affected as well causing the enamel to not form properly.

The hardest long term effects Theoryn has dealt with is the brain and motor skills challenges.  Due to the harsh chemo drugs, Theoryn will lose feeling in his feet or legs and often trip or fall.  This becomes very frustrating to him as he does not have complete control over his body.  It also becomes hard for him to remember things and learn at the pace of a normal child.  He receives special help in school to help him understand the subjects and help him fight through the challenges he faces in his mind.  He has trouble with his speech and had many speech therapy classes to get him where he is today.  He faces constant struggles daily and will for the rest of his life.

theoryn e forest

This is the sad reality of a childhood cancer survivor.  Although the situation isn’t as severe as when he was going through treatment, he will never be the same.  Cancer does not stop once one goes into remission.  The effects that Theoryn deals with day in and day out are due to the lack of research and chemotherapy options for children.  He will continue to fight these side effects for a very long time or maybe even the rest of his life.  Although Theoryn is in remission, he is not cancer free.

 

JE honors Fire Fighter Chris Shaw who we lost in 2017…one awesome and giving man.

 

Alayah took over at our annual Cops vs. Celebrities basketball event. Alayah is in the Leukemia fight.