TO THE WORLD YOU MAY BE ONE….but....TO ONE YOU MAY BE THE WORLD
This is an amazing story about….a little boy....a young man….the love gift of life….and two families brought together by love
KOLBY’S KOURAGE Part 1
Kolby Dalton Eiland was born on March 23, 2000. To the proud parents of Kevin and Stephanie. When Stephanie found out she was pregnant she wanted to do everything right (Steffin, now 11, has asthma and had 2 sets of tubes in his ears)so she decided to stop smoking, to breast feed and anything else she could do to make him her “Healthy Baby.” Her pregnancy was a little hard with a lot of vomiting and just bad days. But the end result was going to be so wonderful. The day came and their Kolby was born. He was the perfect baby, beautiful and very smart from the beginning. Kevin, Stephanie, and Steffin were so happy to have this wonderful gift from God.
Kolby’s illness started at the age of 13 months, he was hospitalized for pneumonia. Before Kolby was diagnosed, he had completely stopped eating and drinking yet was gaining weight. He was lethargic, his eyes were swollen, and he became nauseated when he smelled food. There were days when he vomited nearly 8 times a day. He was also experiencing recurring bouts with pneumonia, and doctors were having a difficult time pinpointing the problem. It was a doctor at the Northwest Arkansas Pediatric Clinic who recognized the signs of renal trouble and referred the Eilands to Arkansas Children’s Hospital. Kolby was hospitalized in March 2003 for swelling. Initial treatment involved diuretics, steroids, blood pressure medication, as well as many other kinds of drugs, but nothing seemed to work. Kolby was throwing up all the time that he became so mal-nourished that a feeding tube was inserted through his nose. The machine to which kolby was connected would become his constant companion, rolling along side of him for more than 2 years. When he wasn’t receiving nutrients through the line, it was providing fluids. In typical Kolby fashion, he named the machine “Charlie” and granted it honorary family member status. In May 2003, doctors decided to make one last effort to save Kolby’s kidney’s and put him through an eight-week course of pulse IV steroids. Although he went into remission, it lasted only one week. After a meeting with the doctors, they all decided that removing one of the kidneys held out the hope of cutting his symptoms in half. The idea was that he would lose less protein if they removed one half of the problems. After his surgery on September 11, 2003, the biopsy report came back on the removed kidney. Kolby was then diagnosed with Focal Segmental Glomerulo Sclerosis (FSGS), a specific form of nephritic syndrome. The condition involves damage to the kidneys filtering system, which results in too much protein entering the kidneys and being excreted through the urine. The protein also builds up in the kidneys, causing scarring that eventually leads to renal failure.
According to information posted on nephrolo gychannel.com, nephritic syndrome affects about twe out of every 10,000 people, and in children, it is diagnosed most often in boys between 2 and 3 years of age.
On December 31, 2003 the Tenckoff catheter was placed in Kolby’s abdomen and peritoneal dialysis began before Kolby’s second kidney was removed in January 2004. . Kolby lost 9 pounds of fluid after his first treatment. Kolby was on dialysis at least 12 hours per day. Like his feeding machine ”Charlie”, Kolby’s new machine also got a name, “Chuck”. However Kolby didn’t feel the same fondness for Chuck that he did for Charlie, because Chuck didn’t have wheels and really limited his activities. Each night at 8:00 P.M. Kolby had to stop what he was doing and hook up to Chuck. That meant no overnight camping trips and no Fourth of July fireworks for as long as the procedure was necessary. Kolby told his momma that when he was done with dialysis, he was going to start staying out late. Another bummer as far as Kolby was concerned was that the catheter in his abdomen prevented him from swimming and taking baths. Sponge baths just didn’t cut it.
In the summer of 2004, the Eiland family received some good news: A friend of Kevin’s would donate a kidney for Kolby. After preliminary testing, the transplant was scheduled for November 2, 2004. Yes, an end to Chuck was in sight. On October 28, the family traveled to Little Rock, for pre surgery procedures only to be told the transplant would not take place after all. Unlike the average kidney, which has one main artery leading to it, the donor had two arteries to one kidney and one artery that branched into two on the other. This made the surgery too risky. Aw, what devastating news, for this family. But of course it was Kolby who gave them all the strength to keep going. Kolby let them know that it was no one’s fault and that it would be OK. What a strong little boy with amazing positivity. The Eiland family got their strength from their little 4 year old son’s courage. He just asked how long will it be before I get a new kidney? Kolby was placed on the kidney transplant list for 14 months.
Kolby’s Family literally lived at Arkansas Children’s Hospital. They live in Wesley Arkansas, 4 hours from Little Rock where the Children’s Hospital is located. Throughout all the hard times Kolby did his best to keep smiling.
Kolby and his family got to go on a Make –A- Wish trip to Florida. Kevin hauled “Chuck” and “Charlie” and all the supplies through the airport. They had a great time visiting Disney World, Universal Studios and Sea World. There were not a lot of days when Kolby felt good. But when he did, he played hard.
With a lot of Prayers, the day came for Kolby to receive his new kidney transplant.
On February 2, 2005, Kolby’s parents received a phone call at 6:30 P.M. saying that there was a possible kidney for Kolby, a gift from an unknown Hot Springs accident victim. They knew with FSGS there was a 50 percent chance the disease would return after the transplant, but they had to take that chance. They arrived at Children’s Hospital in Little Rock at midnight. Kolby was so excited and scared…a new life for him. He at that time had 3 tubes coming out of him. He wanted to be able to start school with “NO TUBES” and to be a normal kid, not the kid with the tubes in his nose and the dialysis catheters.
February 3, 2005, Kolby’s parents and family, passed the time in the waiting room biting their fingernails, waiting for some news. Then news arrived that the new kidney had produced 100 milliliters of urine in its first hour. That was huge…it was very emotional and exciting for Kolby’s family. With each hour came a new update. They got on their cell phone, sharing the news with aunts, uncles, friends and neighbors. But over the course of the five hour operation, the kidney’s production decreased. It went from 100 milliliters to 60, to 40, then to 20. Before Kolby’s incision was closed, the kidney was no longer functioning. The doctors did not believe that Kolby’s body was rejecting the new kidney, as modern anti rejection drugs are very effective and tests showed that the organ had a good blood supply and was a healthy shade of pink. Then on February 5, 2005, more bad news came: FSGS had returned and was attacking the new kidney. Kolby’s family leaned on their Prayer warriors for their support.
After about a week, doctors wanted to do a biopsy to see if the kidney had died. But the Eilands said no, their doctor believed the kidney was asleep and would eventually wake up. They wanted to give it some more time. The kidney stayed asleep for about 5 weeks. Kolby faced an indefinite number of hemodialysis treatments. And because of the recurring FSGS, he had to start plasmapheresis, a process that removes plasma and antibodies believed to be causing the loss of protein and replaces them with a filler called albumin. The family took a temporary apartment in Little Rock, and Kevin took six weeks leave from his job. Kolby’s fifth birthday arrived on March 23, 2005, and the hospital staff threw a party.
Then, at the end of March, the kidney at last sputtered to life. It announced its awakening when Stephanie and Kevin accompanied Kolby to the bathroom. All of a sudden, pee came out and hit Kevin on the arm. Although it was only a couple of drops, Kolby was mortified and apologized over and over to his father. He didn’t understand his parents were crying tears of joy. On March 31,2005 the feeding tube came out for good, and Kolby bid farewell to Charlie. They finally got to go home for good in May 2005.
Kolby returned to Little Rock twice weekly for pheresis, because despite the kidney working, he still excretes abnormally high levels of protein. The treatments had several negative side effects, including lowered immune system function, vomiting and dropping blood pressure. Kolby underwent pheresis more than 40 times, and it seemed to be doing more harm than good. So on May 9, 2005 there doctor decided to cut back the frequency. Despite all the difficulties, Kolby is doing much better than he has in years. Stephanie said, “Since he was 13 months old, he’s had some kind of sickness. It’s just part of his life.” “Now it’s amazing, he feels good. The disease is there, and they don’t know how long he’ll get to keep this kidney. But he used to spend all day either throwing up or saying he was going to. That has all stopped.”
For now, Kolby eats, drinks and uses the bathroom normally. He has developed such an appetite for Kentucky Fried Chicken that his parents have rechristened the eatery “Kolby Fried Chicken.” A visit to the Eiland home might find Kolby outside, tube-free, playing ball or helping his dad build and paint his new clubhouse. He also loves to play with the family’s two new kittens, Mary Jane and Hope Faith, and Kolby has a passion for monster trucks, particularly Grave Digger. Kolby’s parents took him to a monster truck show in Fort Smith, where he met Grave Digger driver Randy Brown. Kolby walked right up to Brown and announced that he’d had a kidney transplant, like he’d known the man for years. Brown responded by giving Kolby one of everything from the Grave Digger merchandise booth and asking him what he wanted him to do during the free style portion of the show. “Lots and lots of donuts” were Kolby’s stunts of choice.
Kolby”s daily regimen includes three anti rejection drugs and two blood pressure pills. A side effect of the anti rejection medication is increased growth of hair on his face and back. He told his momma that he was turning into a gorilla. Instead of becoming self-conscious though, Kolby jokes about his goatee and his even turned the hair and his surgical scars into one-liners: “Chicks dig scars and hairy guys.” Kolby’s sparkling personality lit up the night of 4th of July. This was the first 4th of July Kolby didn’t have to be home before dark to start dialysis. Because of “The Gift Of Life,” Kolbys family can now do the family things they couldn’t do before, they can take trips without taking “Charlie” “Chuck” and all the supplies needed to keep their precious baby alive.
Kolby was baptized on August 21, 2005.
Kolby started school the fall of 2005, with NO tubes.
Doctors told Kolby's parents not to get their hopes up because the FSGS disease could attack Kolby's new kidney within 3 to 6 months. For now Kolby’s disease is in remission. UPDATE:) Kolby's had his kidney for almost 6 years and is in remission. What a miracle!
To raise awareness and to help find a cure for Kolby’s disease, the Eilands have begun working with the NephCure Foundation, a nonprofit organization dedicated solely to finding a cure for nephritic syndrome and FSGS. Kolby’s momma has kept a journal of Kolby at:
TO THE WORLD YOU MAY BE ONE…. but….TO ONE YOU MAY BE THE WORLD
This is an amazing story about a young man….a little boy….the gift of life….and two families brought together by love
Ricky’s Love Gift
Our son Ricky was born January 17,1983. He was the youngest of our 4 children. His journey in life was for a short 22 years. But in that brief time there was so much we learned from him. The love he had for others was unconditional. Ricky had the utmost integrity and loyalty to his friends and loved ones. He had such empathy and compassion for people. He was the family counselor and therapist, he was our strength. He was so logical and his wisdom surpassed his years. He was always there to lend a helping hand to whom ever needed it.
Ricky’s cousin Tim died on October 17, 2000, Ricky was 17 years old. Because Tim’s organs weren’t able to be donated, Ricky made a concrete discussion to become an organ donor. Ricky’s dad and I recalled a day when Ricky came home from the DMV and announced to us so proudly that he was officially an organ donor. A few days before our family had been out to the lake boating, Ricky wanted to cool off, so he jumped in the lake for a swim and had forgotten to remove his billfold from his pocket…needless to say the lake consumed it and its contents. Therefore Ricky needed to replace his driver’s license, social security card, etc. Ricky had a loving zest for life and loved to keep busy. He was a hard worker, he and his dad worked side by side together 5 days a week. Ricky went to college part time to get his degree in law-enforcement. He was an honor roll student since kindergarten. Ricky met Heather, the love of his life in 2002, he not only fell in love with her but loved her baby Payton. Payton was Ricky’s lil buddy and Ricky was as Payton would say it “my Ricky”. Their bond was extraordinary…Payton caught his first fish with Ricky. They played at the gym, played at the park, they swam, shaved and rode 4 wheelers together. Payton’s first visit to the dentist was with Ricky at his side. Heather and Ricky took Payton to Gulpha Gorge here in Hot Springs Arkansas. (See Pics) Ricky moved in with Heather and Payton in May 2004. Ricky brought Heather and Payton to Omaha, Nebraska to meet his brother Dougie, and his family, the summer of 2004. They visited the Husker Stores and went to the Henry Doorley Zoo. Ricky and Heather announced their plans to marry shortly after returning from their trip to Omaha. No date was set but plans were in the making. We love Heather like a daughter and as far as we are concerned Payton was one of eight grandchildren. Heather and Ricky visited several times throughout the week, and on weekends. Sometimes we’d see one or the other of them on a daily basis. We played games together. Heather’s sister Haley would also come over with her friend and the six of us would play all kinds of fun games. Heather loved my fried chicken dinners. Those memories are held close in my heart.
On January 17, 2005, our family celebrated Ricky’s last birthday with him as guest of honor.
Ten days after he turned 22, On January 27, 2005 Ricky had a severe incident with Tachycardia Arrhythmia.
He had an incident once before when he was a baby, he was a little over a year old, and we rushed him to the hospital. He was given a shot in the emergency room, and a few hours later he was again my normal one year old baby. A week later at his follow up appointment, the doctor said he’ be fine, chances of it occurring again were slim. However the incident occurred again a few times as he got older, sometimes after playing basket ball, and at times when he was just sitting watching TV. The doctor wasn’t at all alarmed, he told us that this was very common and nothing to worry about, I said his hearts pounding so fast I can’t count the beats, couldn’t it get tired and just stop. Again he said this is more common than you think.
January 27, 2005: Arrhythmia took our son’s life:
Ricky and Payton came over to our home for a visit…I was bottle feeding newborn baby kittens, (the momma abandoned them). Payton loved helping out and holding them. Ricky wasn’t feeling well that evening, he and Payton had just come from a workout at the gym. You’d have to know Ricky to know he was a pusher…come on I can do one more, then one more and on and on. (The night before, Ricky and his niece had gone on a five mile run.) After a few hours visit Ricky told Payton he needed to give kisses and hugs, it was time to go home and get ready for bed. (Heather was working that evening). Ricky had texted her, before calling his dad, telling her that something was seriously wrong, but Heather worked in a bar/restaurant and they were busy that night. (Heather noticed the texted later on at the hospital that night). Ricky called his dad to tell him something was seriously wrong with him, and died talking to his dad on the phone…His dad started yelling Rick are you there over and over, I took the phone and yelled Ricky please talk to me, over and over, then Payton took the phone and said Ricky’s making loud noises and he’s scaring me, I told him we were on our way to their house, hung up the phone and told my husband to call 911, our son is dying. I was like in a trance, everything went into slow motion, I fell into the door rushing to get my shoes on, I couldn’t get my car unlocked…I felt like I was moving backwards. I knew time was of the up most importance and knew there were no moments to spare. When we arrived at Ricky’s house, (he was unconscious), the dead bolt was locked and Payton was too little to unlock it for us. I yelled for Payton to get on the couch, and told my husband to kick the door in. But he was breaking in through the window. After getting in, we ran down the hall to the bedroom to find Ricky unconscious and grey. I grabbed Payton took him to the living room, held him and started praying. My husband was on the phone with 911 from the time we left our house, and they needed him to call from a landline phone, so that paramedics could find the house. (We did NOT know their address). The 911 operator was telling my husband how to do CPR. Finally paramedics arrived to take over. They worked on Ricky it seemed like an eternity, finally they got a pulse and heartbeat. They rushed him to St. Joe hospital, we followed rescue to St. Joe. We were told by the hospital staff that they lost him. Several moments later they came in and told us that they have a good pulse and heartbeat…we were elated. The staff let us all in that small room to talk to Ricky as they were bagging him (still unconscious). Ricky was in ICU for 6 days…he never regained consciousness but I know he heard what we were saying to him. At one point when I was talking to him, tears rolled down his cheeks, he definitely heard me. That last 6 days with Ricky was truly a blessing for me from God. The day the doctor told us that Ricky was brain dead, our family was devastated but through our devastation and grief we were praying for those families whose loved ones would be receiving Ricky’s organs. Ricky went to be with our Lord and Savior Jesus Christ on February 2, 2005. On February 5, 2005 we celebrated Ricky’s life at his Memorial Service. 2-5 is Rick’s dad, brother and nieces birthday.
Rick was baptized on September 20, 1998
*As Kolby’s family was celebrating Kolby and the gift of life he was given, our family was grieving the loss of our loved Ricky. Just as life for their family would never be the same, life for our family would never be the same either. Never again would Ricky walk through our door announcing he was here. I often wondered why God had taken him…he was so young…his life had just begun…he had his whole life ahead of him. Then I look at our Little Miracle Kolby, and I know God had a very good reason.
We had received a letter from Arora letting us know that the transplants were all successful. Even though we were thankful for our prayers being answered as to the successful transplants, our hearts were in pieces. As I was trying to overcome my pain, the Lord took hold, and through His loving grace, He led me to write. A lot of the things I have written to and about Ricky are on his caringbridge site:
Two Families Brought Together By Love
I woke up and realized he wasn’t here and again started my day with many tears. I’d sit in his room and reminisce wishing what I remembered would just one more time exist. I knew I needed to go on with my life but it was so hard. My heart was crushed and this feeling I’d never felt before. I’d walk around the house, crying day after day with such a flood of memories of my youngest son, and wondered why? He didn’t drink, he didn’t smoke, and he never did drugs, so why would God take my baby?? I still needed him here he taught me so many things. I missed his voice, his smile, his adorable dimples his silly sense of humor. Then one day it hit me, it was as though God took me by the hand and from there, He led me. I didn’t have to walk through this storm alone. He was right there to walk with me, and carry me through if need be.
Blessings from Arora:
My husband (Doug) and I had received a letter from Arora,(Arkansas Regional Organ Recovery Agency) on February 8, 2005, inviting us to a Gift Of Life Ceremony. It said that every year, Governor Huckabee recognizes organ donors from the past years. These donors’ families are invited to the Governor’s Mansion for a brief memorial ceremony. The donors’ families then receive a gift from the governor in recognition of their donor family member. What a beautiful memorial to our son who at such a young age decided to donate life.
Then on February 10, 2005 we received a letter from the Lions Eye Bank, letting us know that the 2 people received the Gift of Sight. On February 21, 2005, we received yet another letter from Arora, letting us know that all the transplants were successful, and all the recipients were doing well at that time. It listed the age of each of the organ recipients. With that news, I knew that a 4 year old child received my son’s left kidney and a 12 year old little girl could see. As well as the many other’s Ricky helped with a new life. Then on June 9, 2005 we received another letter from Arora stating that they received a letter from Ricky’s right kidney recipient a 51 year old woman, who was so thankful, I received a second letter from the same woman a year later. We received another letter from Arora, April 4, 2006, stating that the gentleman who received Ricky’s liver sent us a letter thanking us. His name is Ken, he has 2 children and 2 grandchildren, Ken is a wonderful man with a sweet spirit. Kens daughter sent us some family pictures. Her children are so adorable we hope to meet him and his beautiful family real soon. Then we received a letter on February 10, 2006 from the little four year olds momma. I was so nervous and my hands were shaking, I could hardly open it…to think this little child had my 22 year old son’s kidney. Little Kolby Eiland received our Ricky’s left kidney. The letter was so heartfelt, I cried. Within a day or two I got the information for little Kolby’s caringbridge site. His story is so sad yet so happy first I cried tears of empathy for this amazing family with their incredible story. With all they had been through, so much strength, courage and love was displayed by this family. I couldn’t help but cried tears of joy. Kolby’s story is so amazing and heart touching.
Within a week Natalie, the Donor Family Liaison, with Arkansas Regional Organ Recovery Agency, called and arranged a time to visit with Doug and I about meeting Kolby and his family. We were so excited and couldn’t wait to hug this remarkable brave little guy. We met with Natalie and Judy, with Arora for lunch. They asked us if we wanted to help Kolby celebrate his sixth birthday at Chucky Cheese, on March 23, 2005. Yes, yes was our response. First we would meet the family in a conference room at the Hotel we were staying in. The news media was also there to cover this truly amazing story. Then off to Chucky Cheese to celebrate, and meet the rest of Kolby’s family, who are wonderful loving people.
Meeting the Eiland family was an awesome experience for our family. To see this healthy little boy who at one time and for a long time was so sick, playing, dancing on the stage and having so much fun was increditable. He and Payton met and the two of them hit it off. The Eiland family gave us beautiful handmade crosses that we wear proudly. They also gave us a picture book of Kolby’s life, this book speaks about this brave little boy and his amazing spirit. The last page of the book is a picture Kolby drew of a red truck on it he wrote: Thank you Rick Kolby. Kloby’s brother Steffin drew a picture for us, it reads: I will always remember Rick because he gave my little brother a better life without machines…It is framed and hanging in Ricky’s room. Kolby drew us another picture of a truck that is also framed and hanging in Ricky’s room, the truck is colored red and written on it: ReD Ram To: Rick’s family Thanks Kloby. Ricky owned a red dodge ram that Ricky’s dad now drives. The funny thing is Stephanie told Kolby to color the truck blue, that was Kloby and his dad’s favorite color but Kloby insisted on coloring the truck red. Kolby had no way of knowing that Ricky had a red ram…Stephanie told me the other day that red is now Kloby’s favorite color. Ricky’s room is red, white and black (Nebraska Cornhusker’s & Chicago Bulls), were his favorite sports teams. He also liked the San Francisco 49ers.
The Walk for Kidney Sake:
In October of 2006 Doug and I were honored to be a part of the Kolby Kourage team. We got to run The Kolby’s Kourage Booth we met so many sweet people and also met Kolby’s doctor. The team made $3,600.00. The Walk for Kidney Sake was over $18,000.00. We had so much fun, and we couldn’t have asked for a nicer day for this event. The weather was so beautiful. Our Good Lord Knows what He’s doing…we may not fully understand it but He does, so that’s good enough for me. He has truly blessed us.
The night we lost our Ricky, I realize God was busy performing His miracles, and Kolby is one of them, as well as many others. As Kolby’s family was praying for our family, as they knew someone had lost a loved one for Kolby to have this new kidney. Our family was working through our pain and grief, just trying to make some sense out of losing Ricky, we too were also praying for successful transplants for all the recipients of Ricky’s organs. God answered our prayers. Meeting Kolby and his remarkable family has given our family so much understanding, fulfillment, and peace. We thank God for Kolby, our little miracle.
I hope this story helps people to understand the importance of organ /tissue donation, and how one donor can help several people have a second chance at living a normal life:)
A note from Hostess Risé- Lynn explained this story behind the Red Truck in the photos that you see above. She wrote:
"The red truck was Ricky's, Kolby wanted it on the tshirts for the kidney walk several yrs ago. The reason for the red truck..kolby drew a pic of a red Ram thanking us for his gift. He was unaware Ricky had a red dodge ram:)" Lynn (Ricky's Mother).
This just gave me the chills. I will always remember Ricky and Colby.