By request, I am posting an article I wrote last Spring for the Junior League of Macon. I did make a few changes to update the info for this year.
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“Gaskins family, stay on your toes. Satan will try his best to separate all of you from me, like chaff from wheat. I have prayed for you in particular that you not give in or give out. When you have come through the time of testing, turn to your companions and strengthen them” (Luke 22:31-33; The Message).
In the fall of 2003, my family and I were leading a so called “normal” life, riding its ups and downs. My husband and I had two seemingly healthy children and I was pregnant with number three. Life was good and God had truly blessed us. Earlier that year, my husband, Jason and I had discussed what a clumsy little boy our two-year-old son, Jay could be. The ongoing joke at our house was that Jay could trip over a crumb if it got in his way. Being the first boy in our family, we only had our oldest child, Kaitlyn to compare him too. Everyone knows that girls are graceful and boys are not. We even went as far as going to the Pediatrician just to make sure that everything was alright. The doctor did not appear alarmed, and said that Jay was probably just clumsy. I tried my best to blow it off as a boy thing and move on.
“Gaskins family, stay on your toes”…
In September, we enrolled Jay into a 2K program at a local church. One afternoon during pick-up, Jay’s teacher pulled me aside and asked if Jay had balance problems. She seemed very concerned and told me that Jay was having difficulty going from sitting to standing without stumbling. He had also fallen several times while walking across the room. No one, outside of Jason and I, had ever noticed Jay’s balance problems. Fear, like I had never felt before, welled up inside of me. I walked out of the school in a state of panic and cried all the way home. I kept wondering if maybe I was overreacting. Jay had to be fine. But there was that little voice inside of me saying, “It’s not okay. Something is terribly wrong.” I called the Pediatrician as soon as we arrived home and we were sitting in his office a few hours later.
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Stay on your toes”…
After a complete neurological exam and listening to Jason and I ramble about our concerns, our Doctor still didn’t have any answers. He said that it could be a growth spurt or it could just be clumsiness. To appease us, he agreed to order an MRI. The catch was that it could take 3-5 weeks to get an appointment. We returned home not feeling any better about the situation. Over the next few days, Jay took a turn for the worse. He began complaining of headaches, wanting to sleep all the time, not eating and vomiting every time he would wake-up. I knew in my heart that this was getting serious. There was no way we could wait 3-5 weeks for a MRI. I called the on-call nurse and begged for an emergency scan. The next day, we had a MRI scheduled. Finally, we were going to find out what was wrong with our baby.
“Stay on your toes”…
I remember the day of the MRI so vividly, but is also seems like a lifetime ago. I remember the smell of the procedure room. I remember the hospital gown that swallowed up Jay’s little body. I remember having to hold my baby down while they stuck him to start an IV. Even back then, Jay was so tough. He never made a sound; only tears streamed down his cheeks. The tech finally came and led us to the MRI suite. Being eight months pregnant, I was not allowed past the big double doors. An hour into the scan, the doctor walked out. He placed his hand on my shoulder and uttered any parent’s worst nightmare, our worst nightmare. “There is a lemon size tumor at the base of your son’s brain. We have contacted the Pediatric Neurosurgeon. We believe it is cancer.” Jason was able to hold it together and began asking questions. I on the other hand, stood there repeating those words, over and over in my head: A mass; Brain surgeon; CANCER.
In that very moment, our lives changed forever.
“I have prayed for you in particular that you not give in or give out.”
For the next two and half years, the cancer world became our new “normal”. Bald heads, surgery scars, central lines, ports, dressing changes, low blood counts, tracheotomies, feeding tubes, MRIs, CT scans, spinal taps, 6 weeks of high-dose radiation and months of intense chemotherapy consumed our world. Yes, cancer robbed our lives of many things, but by the grace of God, it was unable to destroy the spirit of my sweet Jay. Even when times were rough, Jay was able to find joy in making new friends, playing at the Ronald McDonald House, or visiting the Memphis Zoo. He learned words that no child should know, like chemotherapy, radiation and neutropenia. With God’s strength, Jay also learned how to live life to the fullest. During those two and half years, Jay visited Disney World, rode ponies and jet skis, visited Graceland and even went up in a helicopter. It may have become increasingly difficult to remember life before cancer, but as a family, we refused to let it defeat us.
“I have prayed for you in particular that you not give in or give out.”
In December of 2005, Jay relapsed for the third time. The cancer had spread and four new tumors were discovered. For the last time, the medical community sent us home with little to no hope for a cure. Being strong in our faith and praying for a miracle, we refused to give up. We continued treatment at home, and Jay courageously fought for three more months. After a 50 day stay in the PICU, our sweet Baby Jay WON his battle with cancer as he skipped through the gates of heaven on March 31, 2006. For almost three years, we prayed for earthly healing, but God chose heavenly healing for our boy.
When you have come through the time of testing, turn to your companions and strengthen them”
It would seem that Jay’s story would end here, but it doesn’t. Colossians 1:16 says,
“Absolutely everything, above and below, visible and invisible…everything got started in Him and finds its purpose in Him.” Jay’s life had a purpose, his battle had a purpose, and his victory in heaven has a purpose. We have found peace in not completely understanding the “big picture”, but we do find comfort in knowing that God has a precious and perfect plan for us. In May of 2006, Jason and I founded the Jay’s HOPE Foundation in memory of our brave little boy. Our mission is to improve the quality of life of children with cancer and their families in Middle Georgia by extending HOPE through social, emotional, spiritual and financial support. In three short years, our volunteer-based ministry has delivered support, encouragement and HOPE, to over 400 families.
“Turn to your companions and strengthen them”
During our battle, I realized very quickly that we were in the minority with the support we received from our family and friends. Many of the pediatric oncology families are single moms or two-income families. Moms and Dads are force to take a leave of absence from their jobs to care for their sick child. Our Jay’s HOPE families can apply for financial assistance with utilities, mortgage or rent payments, and pharmaceutical bills. We also provide gas cards, grocery cards, phone cards and airline tickets for families who have to travel for their child’s treatment.
“Turn to your companions and strengthen them”
Last yearm, we expanded our Jay’s HOPE Resource Center in downtown Macon. The resource center provides a central location for our families to receive the assistance, support and education they need throughout their child’s treatment. The center also houses the only walk-in Bone Marrow Testing Clinic in the state of Georgia. Jay’s HOPE is the largest volunteer/recruitment group for the National Marrow Donor Program and we have registered close to 4,000 new donors to the National Registry.
“Turn to your companions and strengthen them”
Social support is also a very important aspect of our ministry. In the spring, we partner with the Atlanta Braves Foundation and treat our Jay’s HOPE families to a Braves game and picnic at Turner Field. Throughout the year, our friends at Brave Meadow Farms provide horseback riding and pet therapy for our families. Each December, Jay’s HOPE hosts a Christmas of HOPE party for all the local pediatric oncology and hematology families. The evening includes a family style dinner, entertainment, the story of Jesus’
birth, and Santa delivers gifts to the patients and their siblings. Over the past three years, through community sponsors, we have provided Christmas for over 700 children.
“Turn to your companions and strengthen them”
Every September, Jay’s HOPE kicks off Childhood Cancer Awareness Month in Middle Georgia. The campaign included a proclamation give by the Mayor on the steps of City Hall, city wide education through media advertising and a Hats for HOPE day in all of the public and private schools. During September, we strive for our community to recognize the devastating effects of cancer on children, and encourage all efforts to support childhood cancer awareness and education.
“Turn to your companions and strengthen them”
This spring, Jay’s HOPE will celebrate our four year anniversary with our 4t Annual Celebrate HOPE event at Idle Hour Country Club. Spring will also bring the four year anniversary of Jay’s death. I must admit that there are still times that I wrestle with letting go of wanting life to be ‘fair’, and I grieve for life before cancer. I sometimes forget that the rewards that come from knowing and trusting His ways don’t always come this side of Heaven. Jay’s HOPE has given my pain a purpose and reminds me that God can use even the toughest times for His glory. Over the past four years, God has taught me that,
“He causes everything to work together for the good of those who love God and are called according to His purpose for them." (Romans 5:3-5) Therein lies the purpose of our lives - to seek Him with all our hearts and to surrender to His ways, no matter where He may take us. These are hard lessons to learn, but I do know from my life and the lives of many others, that the Goodness is always there.
"As for you, you meant evil against me, but God meant it for good in order to bring about this present result, to preserve many people alive.” (Genesis 50:20)
