Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Connor Guest Book        Photo Album Current Page Page One UPDATE: 11-11-04 Hello family and friends, thanks for continuing to check in on us. It has now been a little over a week since Connor made his journey home to Heaven. We are nearly numb with grief. Some moments are more tolerable than others, although NONE are as they have ever been before. We miss Connor more than I could ever convey with mere words. Yes, we are so happy that he no longer has to suffer, no longer has to be in pain, no longer has to even think of cancer and all it's ramifications. But, and yes, there is a but....we are completely devastated by his absence. Any of you who have had the misfortune of traveling down this road know exactly what I mean. For those of you who have never lost a child, I pray that you never have to feel a pain such as this. It is the WORST, nothing else could ever hurt this badly. Without our faith in God, we couldn't survive this. But, we know that we WILL see Connor again, and then, we will never have to part from him again. Oh, what a glorious day that will be! God is continuing to hold us up, and we trust that He will until our time here is up. THANK YOU, God, for the gift of Connor! Eddie and I went out to Angelheart Farm today. It was our first visit to the new location. It is absolutely BEAUTIFUL! We are so happy for Tracy, and for the program. What a peaceful, serene location, atop a hill in Nolensville. It was so good to visit with Tracy, and hear her tell some of her favorite "Connor stories". Connor sent us signs that he was all around us today while we were there, as I had asked him to do. I know that he is with us every minute, watching over us and helping us through the days. We have been going to the mausoleum each day. It is so comforting to be there. I had promised in my last journal that I would share details regarding Connor's Memorial Service. We have had so many people tell us that they thought the service was beautiful, and a wonderful tribute to Connor's life. Connor was honored by the Goodlettsville Fire Dept. (for those of you who do not know, Connor is the youngest Honorary Goodlettsville Fireman).They stood guard at either end of the casket during the hour prior to the beginning of the service. It was so touching to watch. They also came up, and each one saluted Connor. We had a Bagpiper, (THANK YOU DANIEL!) both in the church prior to the service, and then again at the cemetery outside of the mausoleum. At the very beginning of the service, Eddie and I went up front and stood, and Eddie read the "letter" that I had written for Connor. UPDATE: 11-6-04 Hello family and friends, thanks for checking in. We want to start by thanking EVERYONE for all the support and love shown to us this week. God has held us up through the hardest days of our lives, as we knew He would. We are blessed with the most wonderful families, and network of friends. It was apparent to everyone this week that Connor has impacted SO, SO many lives in his ten years. He finished the job on earth that God had laid out for him, and he received his early reward. I will try to detail more about the service at a later time, I just can't put it into words right now. I will share a message to Connor that I wrote, and Eddie read, with me by his side, at the beginning of the service: ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ To our son, our hero, our "Bravest Little Trooper" Ten years ago, your Mommy and Daddy were blessed with the arrival into this world of you, Connor Jordan Hunley. Words can not describe the sheer joy of the moment of your birth, and when we held you in our arms for the first time. Oh how lucky we are, God chose us, US, to forever be your Mommy and Daddy. There could never be another loved more than you, Connor. We have had ten wonderful, blissful years together. People have always been drawn to you, our precious child. That is no surprise to us, because we know that what you are goes beyond "special". God placed you here on this earth to help others. You have been through so much in the past three years, but we never heard you complain a single time. You never asked, "Why me?" You never lost your zest for life. You never let the "C" word get the upper hand. You wanted control over the situation, and, now we can see, you had the ultimate control. You lived EVERY day to the fullest. We are in awe of you, and of your strength. People tell us that we are strong. Well, Connor, you are the reason we are able to be strong. You taught us the true meaning of strength, courage and perseverance. God used you in a mighty way, and He continues to use you to touch others. As we are left here to go through each day without you, we know that God will hold us up. We know that you will be all around us. You will be missed beyond words, not just by us, but by each person fortunate enough to know you. We love you, Connor. We love you with every fiber of our being. We will be with you again someday, when God decides that it is time. Thank you for the gift of you. Thank you for a lifetime of precious memories. Thank you for the love you have given. Thank you, God, for allowing us to be Connor's Mommy and Daddy. Forever, Connor's Mommy and Daddy. ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ ^i^ Please keep us and our entire family in your prayers, as well as Cheyenne's family. Each moment of each day is so difficult without Connor here. We do find such peace in the fact that Connor is now in the arms of Jesus. We know that we will re-join him some day, when God decides it is time. What a day, glorious day, that will be..... I would like to ask that anyone who has a special memory of Connor that they would like to share, please leave it in the guestbook. Even if you have never met him, if there is anything that sticks out in your mind through the years of this web site, that maybe touched you in a special way, please share it with us. We love to hear "Connor stories". We will forever cherish each and every memory. We love you all and thank you for continuing to lift us up on this journey. Cherish every moment, never take a second for granted, we cling to those "moments" that Connor has given us, and will for the rest of our lives. We miss you so much, Connor! You are, and will forever be, Mommy's Sunshine Boy! Thank you for all the little signs that you are showing us and others, that you are still around us. Mommy and Daddy anxiously await the day when we can hold you, hug you and kiss you again. Then, we will never have to say "Goodbye". We love you more than anything in the WHOLE WIDE WORLD!!!!!! Nothing will ever change that! Sweet dreams, Angel-Cake, Mommy and Daddy send you our eternal love..... We love you, Rhonda and Eddie, Forever Mommy and Daddy to the "Bravest Little Trooper!", Connor Jordan Hunley ~~~~~~~~~~~~~~~~~~~~ Connor's Obituary: Connor Jordan Hunley Hendersonville, TN Age 10 November 1, 2004 November 1, 2004. Preceded in death by his grandfather, Joe Hunley and uncle, Mike Fulton. Connor was an Honorary Goodlettsville Fireman, honored for "His Commendable Display of Bravery". He was also an Honorary Chief of Police for Metro Nashville Davidson County. He received a 'Livestrong' award from the Lance Armstrong Foundation. He received the Southern Region 'Vice President's Award' from Kellogg's Snacks in recognition of his Courage, Strength and Inspiration to Others. He was also the 2003 Make-A-Wish Child Ambassador for the Annual "Waiting For Wishes" event hosted by the Kevin Carter Foundation. Connor had a great love for animals, cars, bicycles, motorcycles, hockey, his Playstation 2, Monster Garage, American Chopper and his family. Due to his zest for life, you would often see him riding the halls of Vanderbilt Children's Hospital on his I.V. pole or riding his bicycle in his neighborhood all the while taking chemo. Connor touched many, many lives in his ten years here on earth. His family and friends will live with their special memories of Connor for a lifetime, until they are reunited someday in Heaven. He has now won the battle over cancer. In life's race, he has beat us to the finish line. Earth's loss is surely Heaven's gain. If you were a star that wasn't expected back in the universe for a thousand years, I'd wait. If you were the sky and everyone went inside when you got sad and started to rain, I'd Stay. And if you were a peach and the world decided to get rid of all peaches, I'd pick you up, Put you in my pocket....AND KEEP YOU...FOREVER. He is survived by his parents, Eddie and Rhonda Hunley; maternal grandparents, Carl and Diane Graves; paternal grandmother, Beverly Hunley; maternal grandfather, Neal Akins; great grandmothers, Cassie Fulton, Roberta Akins, Maybelle Graves, Clara Glaus and Carrie Hunley; uncles, Johnny Akins and Chad Graves; aunt, Tammy Wasilewsky (Shelton); and an extended and loving family of cousins, aunts and uncles; his cat, Zoe and hamster, Doris. His remains are at Hendersonville Funeral Home where the family will receive friends from 11 a.m. til 3 p.m. and 4 til 8 p.m. on Wednesday, November 3, 2004. Services will be conducted 1 p.m., Thursday with visitation starting 12 noon at the Hendersonville Church of Christ with Bro. Keith Parker and Bro. Jerry Harwell officiating. Pallbearers: Johnny Akins, Brandon Butler, Kevin Butler, Chad Graves, Jeremy Hardin and Shelton Wasilewsky. Honorary Pallbearers: Dr. Sadhna Shankar, Dr. Debbie Van Slyke, Dr. John Brock, Nurse Kelly Newman, the entire Pediatric Oncology Clinic and Department at Monroe Carroll Children's Hospital at Vanderbilt, Mr. Jordan Stafford, Students and Staff at Goodlettsville Elementary School and Kellogg's Snack Team-Southeast Region. Memorial contributions may be made to Caring Bridge.org; Make-A-Wish Foundation of Middle TN; Angel Heart Farms; Hugs and Hope Foundation; Make A Child Smile; Children of the Promise; or the Sumner County Humane Association. HENDERSONVILLE MEMORY GARDENS & FUNERAL HOME, 353 Johnny Cash Parkway, Hendersonville, TN, (615) 824-3855 UPDATE: 11-2-04 ****Arrangements for our son, our hero, Connor**** Visitation - Tuesday, Nov. 2 - from 4-8 pm - Wednesday, Nov. 3 - 11-3 and 4-8 pm Both of these visitations at Hendersonville Memory Gardens and Funeral Home 353 Johnny Cash Pkwy. (Gallatin Rd.) Hendersonville, TN 37075 Phone number (615)824-3855 Funeral service - Thursday, Nov. 4 - 1:00 pm at Hendersonville Church of Christ 107 Rockland Rd. Hendersonville, TN 37075 Phone number (615)824-6622, Visitation on Thursday will be one hour prior to service at the church building. Interment following at Hendersonville Memory Gardens Mausoleum and Chapel. If anyone desires to make a memorial in Connor's memory, some options are Caring Bridge, Make-A-Wish Foundation, AngelHeart Farm, Hugs and Hope Foundation, Make A Child Smile, Tumbleweed Foundation, Children of the Promise, or your local Humane Society, as Connor wished to be a Veterinarian when he grew up. Thank you all for loving our little boy! UPDATE: 11-1-04 Our precious sunshine boy, Connor Jordan Hunley, went to be with Jesus at 7:40 am this morning. Nana and Poppy were here with us, as they, along with us, never left his side throughout the night. In true Connor fashion, he was fighting right up until the end. We told him yesterday, on his tenth birthday, that it was O.K. to stop fighting, and to just rest in God's loving arms. I know in my heart that Connor was thinking of us, his family left behind, when he fought through the day yesterday and through the night last night, so that he wouldn't pass on his birthday. I also know that he had many awaiting his arrival, including Uncle Mike and Granddaddy, along with all of his friends who made the journey before him. He talked at length about his Uncle Mike last week, even though he was three days old when Mike passed away. So, we are greatly comforted by the fact that he has MANY who will take care of him until we can rejoin him. I have to tell you, Connor had the most beautiful, peaceful smile on his face when he left us this morning. Please keep us in your prayers, especially in the coming days. We are heart-broken, heart-shattered, by the earthly loss of our "Bravest Little Trooper".... Thank you all for your continued support, you all have made this journey much more bearable. We are blessed, beyond belief, that God chose us to be Connor's parents. I know it wouldn't be right to say that we loved Connor more than any parents ever loved their son, but I can say that there will never be another child loved any more than Connor. We love you, our sweet sunshine boy, we will miss you with every fiber of our being until the day when we will be reunited, never, ever to part again. All our love, Connor's Mommy and Daddy Arrangements will be posted later. Connor will be at Hendersonville Funeral Home and Memory Gardens, but we haven't worked out all the details yet. UPDATE: 10-31-04 Hello family and friends, thanks for checking in. I just want to do a short update tonight. As most of you know, tomorrow, Sunday, Oct. 31st., is Connor's tenth birthday. In my last journal, I told you all that Sunday would be kind of an Open House day here at our home. We have, unfortunately, seen a considerable decline in Connor over the past 36 hours. So, we have to change the plan. We will have family and loved ones here tomorrow, but we will not be able to do the open house. We hope you all understand, as we certainly do not want to hurt anyone's feelings. But Connor's needs are our top agenda, and he just can not handle alot of traffic at this time. We appreciate your support. Thank you for all you are doing for us. We need an extra room to store all of Connor's birthday cards, and we are grateful. Please continue to pray for Connor. God is cradling him in His arms, of that, we are certain. Please pray for strength for all of us in the coming days. Have a safe and happy Halloween. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 10-28-04 Hello friends and family, thanks for checking in! Well, it's Thursday.....three more days until Connor's 10th birthday! He is counting down the days. He is still being flooded with birthday cards each day. I haven't counted, but I KNOW he has received over a thousand!!! Thank you, thank you, thank you to each of you for helping to make this his best birthday ever! His pain is finally under control, thanks to the increase in his morphine pump. Of course, in order to get it under control, he is sleeping much of the time. We can't have it both ways. As anyone who has travelled this road knows, you get to a point where you are just SO THANKFUL that they are not hurting, that you just accept the hours and hours of sleep. Obviously, we would LOVE for Connor to be awake, so that we could be interacting with him more. But, as his disease continues to advance, that is just not possible. Connor is only able to be in one position in bed, and is not able to get up at all, it is just too painful. As I told you in a recent post, the oxygen is here, although it is not turned on yet. I talked to Connor about it again late last night. His breathing does seem to be becoming more labored, so I told him to just THINK about using the oxygen some, so that his body doesn't have to work so hard. He did tell me he would think about it. He still has not wanted to talk about the current situation, and we are following his lead. When he is ready, we will know. We will not try to force too much info on him. We are letting him call the shots on "the talk". He is assured ALL THE TIME that we are here, right by his side, and that is where we will remain. He knows, as he is reminded often, that if he wants to talk, or has any questions, that we will be here to answer them. We do not talk about the specifics of this situation around him, even if he is asleep. I want to send out a special THANK YOU to Kellogg's/Keebler, Eddie's work. They have been, and continue to be, so good to us. As most of you know, they sent us on a 10 day trip to Florida in May, when we learned that Connor had relapsed yet again. They also had a brand spanking new go-cart waiting for him when we arrived home. They are now allowing Eddie to be home with us, during this most crucial time. Thank you, thank you so much. Eddie is exactly where he needs to be right now, and we are thankful. They are the MOST WONDERFUL group imaginable! On Saturday night, our neighborhood friends surprised us with a candlelight vigil in front of our house. It had been raining all evening, and, thanks be to God, the rain stopped as they were all gathering for the vigil, and stayed away throughout. It was a touching sight to step out the front door, and see all the people who came in support of Connor. A couple pf people said a few words about Connor, then we sang a couple of songs, and had prayer. Connor was asleep during this time, but we told him all about it. We want to thank all of our neighbors who participated, it meant so much to us! We have been asking and asking about his birthday, and what HE would like for it to be extra special. Connor does not like to be surprised, so we want him to be in control of his birthday. I suggested to him, last night, that we could have kind of an open house that day, so that well-wishers could come and go, as they were able. That way, he will not be overwhelmed with alot of people at one time. He seemed to like that idea, so that is the plan. Anyone wanting to stop by on Sunday is welcome. We do have to request that anyone who has signs of sickness, such as cold, stomach virus, etc., please remember that Connor CAN NOT be around any sickness, as his immune system is so compromised right now. He has still been running a fever, and we are not sure of the nature of the infection. Any sickness right now for Connor could be most devastating. Thank you for understanding. We can not guarantee that Connor will be awake. We are praying that he IS able to enjoy his special day. We thank you all for helping us along this journey, we couldn't do this without the help of God, and without the help of our great support system. Thank you for EVERYTHING you are doing for Connor, and for us. Most of all, thank you for the prayers that are storming heaven on Connor's behalf. THAT is where our strength is coming from. I have to send a special thank you to Connor's best friend, Jordan, who lives in our neighborhood. He has been so wonderful about coming by to visit with Connor, even just sitting with him if Connor is asleep. He is such a remarkable young man! Please continue to pray for our extended family, grandparents, aunts, uncles and cousins, as they all help us try to cope day-to-day, as they try to cope themselves. We all continue to pray for a miracle for Connor, for Divine intervention. We know so many of you are doing the same. I must say that there is not a day when Connor complains about any of this. As sad as it is to see him lying there, unable to get out of bed, we are so "in awe" of his attitude. I don't know many adults who could handle his situation with such grace. We are so blessed to be Connor's parents, SO BLESSED. Have a wonderful weekend everyone. If you celebrate Halloween, enjoy those special moments that come on that day. Oh, the excitement in children's eyes! Cherish every moment of family time each day. Never let a day go by without thanking God for the blessings in your life, and we are all SO BLESSED. Please remember all our friends in your prayers. Cheyenne is having a difficult time, and really needs lots of prayers. Kody is recovering from brain surgery, please pray for a complete recovery. Lots of kids, lots of BIG problems, this is reality. Thank you for the prayers for Connor, please continue to pray for him each day, we THANK YOU SO MUCH! Peace to all, and may God bless us all! We love you, ~~Rhonda, Eddie and Connor, our "Bravest Little Birthday Trooper!" UPDATE: 10-22-04 Hello friends and family, thanks for checking in. I want to start off by saying that we are overflowing with gratitude for the tons of birthday cards and packages, and for all the guestbook entries for Connor. Connor has gotten hundreds of cards over the past week. You don't know how much it means to us, and to Connor. Mail-time around here has gotten to be quite a production. We thank you all from the bottom of our hearts. It is so comforting to know that so many people are praying for, and caring for, our son. Connor has not had the best week. He started running a temp on Monday. It has been up in the 104-105 range (under the arm) several times. We are not sure where the fever is originating from. He was put on an antibiotic on Tuesday, a broad-range antibiotic, so hopefully, it is going to work on the culprit. He was switched back to the morphine pump on Saturday. He told us that he thought it worked better for him than the fentanyl. The dosage has been tripled since Saturday, but it finally seems to be providing relief. We also noticed, yesterday, that his breathing seems to be more labored, with shorter breaths. His nurse (Kiersten) came out yesterday to check it, and went ahead and ordered oxygen. She told Connor, which really scared him. But she assured him that it was here, just in case, that he may not be needing it right now. Also, this week, she was not able to get blood draws for labs from his PIC line. She tried to stick him one on Wednesday in his arm, and couldn't get a vein. She talked to me and Eddie yesterday in private, and said that, at this point, it really isn't worth the stress to Connor to be poking him for labs. She said she would leave it up to us and Connor. We told her to ask Connor, and if he said, "No more", then it was no more. So, she gave him the option, and, of course he said "no more" (who wouldn't???). The oxygen was delivered last night. Thankfully, Connor was asleep at the time. Connor has not been open to talking about his situation at length. He knows how much info he can handle. We have assured him over and over that we are HERE FOR HIM, and he can talk to us about it when he is ready. He was quite sad yesterday after the subject of oxygen came up. The year that Connor was diagnosed (2001) was the same year that Eddie's Dad, Joe, passed away two weeks after heart surgery. Connor remembers that Joe was on oxygen at the time, so that is what he relates it to. Luckily, Nana and Poppy, and my younger brother, Chad, were here yesterday, so Chad distracted him by playing video games with him. That seemed to get his mind off things. Connor is sleeping much of the time. Some days, he will be awake for hours at a time, but he really forces himself to stay awake. He has slept through several visits this week. Again, we ask you, if you are planning on coming for a visit, please call first. That is a big help, as sometimes Connor just wants quiet. Thank you all for understanding. Thank you all for everything you are doing to cheer Connor up! His birthday countdown is on--9 days away--Oct. 31st. Connor will be 10 years old! Thank you to everyone who has sent cards and gifts, it really has been a "birthday month" for Connor. He has gotten so many wonderful surprises. Please pray that Connor is able to enjoy his birthday. We keep asking him what he wants, and how he would like to celebrate it. He is still "thinking about it". A special THANK YOU to Paige and family for the wonderful recording of her singing her special song to Connor. It is the most beautiful thing I have ever heard. Thank you for the continuous support that you give to us. We are so thankful. We are thankful for each new day that God gives us as a family, and we ask for another. This is, without a doubt, a most difficult journey. We continue to ask for God's intervention, and for an earthly healing for Connor. Watching your child in pain and suffering is one of the worst things in the world, as many of you reading this know firsthand. Please keep those prayers going for us all, along with Connor's grandparents, uncles, aunts, cousins...... We all feel so helpless right now. Thank God every day if your child is healthy. Thank God even if they are not, He will carry us through. We are glad you are here, peace to all, and may God bless us all! We love you, ~Rhonda, Eddie, and Connor, our "Bravest Little Trooper" UPDATE: 10-16-04 Hello everyone, thanks for checking in. Connor is sleeping at the moment, so I thought it would be a good time to update. Things are about the same. We have been working all week on trying to get down the best pain control for Connor. We are still not quite there. He was switched from a morphine pump to a fentanyl pump. He also had to have a PIC line placed in his arm yesterday. Because of the position he is in, his port access was not wanting to work. He can only lie in the one position, so we opted for the PIC line instead. Two nurses came out to place the line, and bragged on how well Connor did, they actually said he did better than any child OR ADULT they had ever had. That is our "brave little trooper". So much has been going on this week, my mind is kind of in a fog. I wanted to share something very special, one of the MANY "special" moments in this week. Connor has a friend, Paige, whom he has known since 1st grade, just before diagnosis. Paige and her family have been "there" for us throughout Connor's illness. I have often thought that Paige would be Connor's bride some day, they just have that kind of connection. Well, one night this week, Paige, her Mom Becky, and her brother and sister, Cody and Skylar, stopped by to see Connor. Paige wanted to bring him a surprise. The surprise was a special song that SHE had written for Connor, to the tune of 'Wind Beneath My Wings' by Bette Midler. And not only did she write the song, she actually SANG it for Connor, right there in our living room. We were touched beyond words. Connor was dozing and kind of in and out of sleep, but I'm quite certain he heard every word that Paige sang. Paige, I know you all read this. As I told you that night, that meant more to us than anything imaginable. You are so special to us, and we thank you for being Connor's friend. Yesterday, Connor was surprised by a visit from one of Nashville Metro's finest, Chaplain (Officer) Duke with the Nashville Metro Police Department. He was sent here with orders from the Chief of Police, Chief Ronald Serpas. Connor was presented an award, making him an Honorary Chief of Police for Nashville, Davidson County! He even has his own badge and Policeman's hat now. Thank you, Officer Duke and Chief Serpas, for honoring Connor in this way. He was smiling from ear to ear! I want to thank all of you who have put the word out about Connor's upcoming birthday (Oct. 31). He has been bombarded with cards this past week, both at home and at the post office. We are amazed! I haven't taken a count yet, but I'm sure that our postman could probably use some assistance in Connor's mail delivery. Thank you, thank you, thank you all for making sure that Connor's birthday month is so very special. A special thank you to Cheyenne and family, and Ryan B. and family, for the special packages for Connor, as we know that you all are in your own battles right now. Connor has gotten so many special things lately, thank you to everyone for putting a smile on his face. Connor's favorite "classic" show to watch is Starsky and Hutch. Since the new movie came out, he has gotten so interested in the series. He has the first two seasons on DVD, and watches them all the time. Well, this past week, he got an email from David Soul (Hutch), and an autographed photo with a personal note from Paul Michael Glaser (Starsky). He couldn't believe it. He also really likes Loretta Lynn, and he got an autographed photo with a personal note from her as well, along with her newest CD. Thank you to everyone for making these things happen. We want to thank everyone for all you are doing for us. I can assure you that the Hunley's will not go hungry, there has been a continuous supply of food brought to us this past week. Thanks to all who have brought things by. Thank you to our church family, and to Christian for coordinating meals for us. Thank you, also, to the Cushman's (Sadie Grace's parents and grandparents) for all the food you have been bringing by. Thank you for all the visits and phone calls. Please, if you are thinking of a visit, please just give us a call first to make sure it is a good time for Connor. He can become overwhelmed, and we want to keep that from happening. We want him to be as comfortable and "at ease" as possible. Thanks for understanding. We are so fortunate, and so humbled, to have you all in our lives. This is a most difficult journey, but we know that we are not alone in this. We do continue to pray for God's intervention, for an earthly healing for Connor. We know that it is all in God's hands. We claim Connor's healing, in His name. Among the countless cards this past week, came an envelope from White House High School, which is about 20 minutes from where we live. One of the classes made Connor cards on the computer, each student designing his or her own card. The cards were ALL special, but there was one that really caught my eye, because of one line in the card. The card was made by Kellye Rainwater, and read as follows: "The strongest wishes for your comfort and healing are being made. THERE IS ALWAYS SOMEONE PRAYING FOR YOU. Keep your faith, and know that you are loved." That one line--There is always someone praying for you-- stopped me in my tracks. As I thought about it, and thought about this web site, and all the support that comes through it, I realized that Kellye is exactly right. With all the prayers going up ALL OVER THE WORLD, there is most likely SOMEONE, SOMEWHERE, praying for Connor at all times. How comforting that is to me, Connor's Mom! Thank you, Kellye, for making me see that. And thank you ALL for being here for us! Please continue to pray for Connor, and for all his other friends fighting battles of their own. And please always remember to pray for the families of the children who have gone on to the glory that is Heaven. Have a wonderful weekend, make the MOST of each day with your family and loved ones. Every moment is precious, never take a single one for granted. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 10-12-04 Hello friends and family, thanks for checking in. October 12, 2001--three years ago to the day......we heard the words for the first time...."Connor has cancer". Our lives would change FOREVER. Connor's "carefree" childhood was no longer. Everyday "normal" routines ceased to exist. Simple, mundane worries and troubles took a back burner, and were no longer even worthy of a thought or comment. Our journey into the "childhood cancer" world began. Yes, it happened to "our" child. It was no longer something that could be avoided by a change of a television channel, or by turning our head another way. Our child was starting what would be, and continue to be, a battle for his life. Our six year old child, in 1st grade, whose biggest challenge was getting up in the morning to make it to school on time. The challenge had now shifted to making it through TODAY and praying that TOMORROW would be a good day. Those first days, weeks, months....I can still see Connor, at home, lying on the sofa, as run-down as anyone could possibly get. Eyes weak, hair coming out, but spirit as strong as ever. Thank God for our "strong-willed" child! Three years later, I know that it is that same "strong-will" that has allowed Connor to muster up the strength to keep fighting, even when his body is telling him something entirely different. Three years of our lives, one third of Connor's entire life.....fighting for another day...... We are so overwhelmed by the outpouring of love and prayers through this website. Scroll down through Connor's guestbook, as Colette talks about in her recent posting, and you will find that people from ALL OVER THE WORLD are lifting Connor in some of the most heartfelt prayers I have ever heard. We are thankful, SO THANKFUL, to have you all "with" us each day. We feel those prayers, right to the core of our being. THANK YOU, THANK YOU ALL! Connor has been doing O.K. since I posted on Friday. I use that term loosely. He is still in a lot of pain, despite the heavy, heavy pain medication. We did meet yesterday, here at home, with the Hospice nurse and social worker. They were so helpful and caring. Connor wanted us to talk somewhere else, so that he couldn't hear us. He does know that his cancer is back, but he told us he did not want to hear anything more, so we will let him control how much info he can handle right now. We assured him that we will be with him, right by his side, and that when he is ready to talk more, or ask any questions, we will be there. He knows what he can handle, and what he isn't ready for. We are sure that, in his mind, he probably already knows. As far as Hospice, he just knows that it is another Home Health team that will be coming out, so that he can be at home, and not in the hospital. Some days, he sleeps all day, other days, he is awake much of the day. He has had lots of visitors, sometimes he sleeps through the visits. We ask that anyone wanting to come by to see him, please, please call first. If it is not a good time for Connor, we will let you know. He becomes overwhelmed, at times, with everything, and is not always in the mood for company. Please try to understand. Our priority right now is to keep Connor completely comfortable and at ease. We appreciate all the cards, gifts, phone calls, visits, food, guestbook entries, and all that you all are doing for us. I'm not able to answer emails right now, as my time is Connor's, but I do read them all, and appreciate all the kind words. We know, without a doubt, that God has us in His loving arms, carrying us through each day. Our strength comes from Him. We ask that you continue to pray for Connor, for the pain to subside, and for him to have some happy, joyful moments. Cancer is so cruel, but we can not let IT control our precious days. We are thankful for each new day, and we ask God for another. Life is so precious, yet can change in the blink of an eye. Make the most of every day, do that for Connor. Please always remember our other buddies going through their own battles, and for those families who no longer have their child with them here on earth. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie, and Connor, our "Bravest Little Trooper!" UPDATE: 10-9-04 Hello friends and family, thanks for checking in. Oh how I wish I could give some positive news. The scan results were confirmed. There is now metastasis disease in all areas of Connor's lungs, all throughout his liver, and in the area outside the perimeter of where the tumor was removed, into his right thigh. We are so heartbroken. Nana and Poppy stayed with Connor today while Eddie and I went down to meet with Dr. Shankar and Dr. Debbie. We haven't been home long. Hospice will start coming out the first of next week. We met with them while we were at the hospital today, as well. Connor will start on a chemo drug, VP16, but it is NOT a cure. It could slow down progression of the disease, OR it may not. We will try it, as it is not as toxic as other chemo drugs. No chemo or radiation would be curative now. Connor is considered terminal. We will work with hospice to get down a good plan for pain management. This could involve another epidural. He slept all day long, only waking for a few minutes at a time. I'm going to end this update by asking for you all to continue to pray for Connor, for us, and for our families'. We are so blessed with such a great support system. I will try to update as often as I can, to keep you all informed. Thank you for helping us along on this journey. We will continue to look to God for guidance and strength, this is in His hands, as it really has been all along. Please hug your children tight, make sure they know how loved they are, EVERY DAY. Peace to all, and may God bless us all! We Love You All! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 10-6-04 **Update--Wed. morning 10/6** Connor will be re-scanned Thursday (10/7) afternoon at 2:30 pm. Eddie and I will then have a meeting with Dr. Shankar on Friday afternoon at 2:00 pm to find out and discuss the results. Please continue to pray for a miracle. Thank you all so much for the wonderful messages you have been leaving in the guestbook. We read them ALL, and they mean so much to us! I'll update when I have more info. UPDATE: 10-5-04 Hello everyone, thanks for checking in. I want to start by asking for URGENT PRAYERS FOR CONNOR. He had scans last week in preparation for his upcoming radiation treatment. Dr. Shankar called me back this morning with the report. Connor now has "multiple" new areas of concern showing up in all lobes of his lungs, the largest being in the right lower lobe. In addition to that, he has "multiple" new areas of concern in his liver, varying in size, in both lobes of his liver, (quoting)"extremely numerous". Since contrast was not used for the scan, he will be re-scanned with contrast this week, the scan has yet to be scheduled, just to confirm the findings. This is, of course, the worst possible news. After the next scan, we will meet with Dr. Shankar to discuss what's next. It is so difficult for me to imagine that after all Connor has been through, and still going through with regards to his recovery from surgery, that the cancer has metastasized this quickly. He is still in the hospital bed, here at home, the majority of the time. He is still using his walker, and his wheelchair. He is not eating much of anything, some days absolutely nothing. I am hooking him up to his TPN each night. It supplies half of the nutrition that his body needs. Along with all of this, his leg pain is back. I will be doubling one of his pain meds, per Dr. Shankar's instructions, to try to bring him relief from the pain. He had seemed to be doing so well with his recovery. But the past few days, he had seemed to be declining. We went to Nana and Poppy's yesterday for the first time since before surgery. He enjoyed being up there, even if he was lying down the entire time, and sleeping alot. He had the scan on Thursday of last week. Then, on Friday, he had a minor surgery to change out his suprapubic catheter, as it had become completely clogged. It was going to come out that day, but Dr. Brock made the decision that morning to leave it in for a few more days, which is a good thing. He had been scheduled to start radiation on Oct. 18th, twice a day for two weeks. Of course, if the findings are confirmed, that plan will certainly change. I will update with more info as I receive it, so that prayers can be specific. Thank you all for the birthday greetings for me. Connor wrote out a special card for me, and gave me a stuffed kitty that looks like Zoe. It meows and purrs. He also INSISTED on giving me $23, I have it tucked away, he refused to keep it himself. So, even though he had to have surgery that day, the best gift in the world was that we were together as a family, that is all that really matters. Connor does not know this latest news yet, and will not know until it is confirmed. In my worst nightmare, I can't even begin to imagine that conversation. Thank you all for standing by us. We need you all now more than ever. We are thankful for you all. Please continue to pray for Connor's miracle. God is carrying us, of that I am certain. Peace to all, and may God bless us all. We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 9-27-04 Hello family and friends, thanks for checking in. Connor is doing well at home. He is still in the hospital bed most all of the time. He had physical therapy come out twice this past week. He had the same lady both times, and he really likes her, which is a huge plus! She came out on Tuesday, worked with him for about an hour, and kind of laid out the goals she would like for him to be able to achieve over the next few weeks. Thursday, he had three different appointments at Vanderbilt, so Eddie and I had the task of getting him down the steps in our house, and out to the car. We had him all situated in his wheelchair, ready to carry the chair, with him in it, down the steps. Connor decided, at the last second, that he wanted to try the steps himself, with us supporting him. So that is exactly what he did. We were SO proud of him. The day was rather tough on him, as he had not been "up", out of bed, for more than an hour at a time. But, he did so well. We went to the clinic to have his needle pulled from his port, and emla put on for a new needle. Dr. Debbie and Nurse Ann were so great with Connor, doing whatever it took to make him comfortable, thank you ladies! Then, we were off to Dr. Brock's office to discuss the catheter situation. By the time we made it to Dr. Teng's (Radiation Oncologist) office to discuss the upcoming radiation, we were running quite late, and he had had to leave. So, we re-scheduled for tomorrow (Monday, the 27th), and made our way BACK to the clinic to meet back up with Ann and Debbie. Ann re-accessed Connor's port, and we were outta there. Have I mentioned before what a fantastic "medical care team" Connor has at Vanderbilt?? On Friday, when Gretchen (Physical Therapist) came back out, she was SOOO impressed with Connor's progress since Tuesday. He went down the stairs with her, and back up again. Way to go, Connor!!! In reading the guestbook, there appears to be some confusion as to the radiation treatment. Connor did have five treatments of brachytherapy (bead therapy) in the hospital, prior to the pathology report coming back from surgery. It was then decided to stop the brachytherapy, and plan for external radiation, as there was still cancer remaining, in spite of the radical surgery. It was necessary for Connor's body to heal up from surgery before starting the radiation. He will be re-scanned this week, providing he has healed up enough, then the radiation will be planned, based on the scans. It should start in a week or so. I must say a GREAT BIG THANK YOU to our church family, and to Valerie and her 12 year old daughter, Brianna, for spearheading the yard sale that was held yesterday for our family. There was an overwhelming response, the weather was perfect, and it was a complete success. THANK YOU to the countless people who were involved in this! I know this was a huge undertaking, and we are thankful to all who donated their time and energy for us. Thank you, thank you, thank you!!! We certainly are blessed with such a fantastic support system, and with so many people who love and care for Connor! We have a new addition to our family. Our wonderful neighbor, Susan, who has been a great friend to me, brought over her "mama" hampster and 9 babies last week for Connor to "hampster-sit". She thought this would lift his spirits, and it did. She told him that he could have one of the babies when they were big enough. When she picked them up, she brought over one of the older males that she already had, to show to Connor. He fell in love with it, so she gave it to him, instead of one of the babies. He named it Doris, from "Home Alone 3". (Yes, I did say it was a male!) Connor LOVES Doris. He has wanted a hampster for so long. Thank you so much, Susan, for making this wish come true for Connor! Doris is actually quite cute, he is a black bear hampster. He wears his wheel out each night. This morning, I was awakened by a crash. I investigated, and found the cage in the floor, thankfully still closed, with Zoe, the guilty party, standing beside it, peering in. She, naturally, is NOT impressed with our new family member. But, we have been loving her up alot, to let her know how much we love her. She has been exercising tons of self-control, in regards to Doris, but this morning, she gave in to the temptation. I'll let you all know, when we find out the plan for radiation. Nana and Poppy are coming down tomorrow, to help me get Connor to Vanderbilt. Thank you all for continuing to encourage our family. A special thank you to Rita, from New Jersey, for the absolutely beautiful graphite drawing of Connor and myself, that she made from the photo on the photo page. We received it this past week. Thank you, also, to my friend, Christian, for our "dinner out" on Friday night, I really needed that! We are so blessed to have so many people praying for and supporting Connor. Please continue those prayers for him, and for all of the other children battling. Please visit Justin's page (link above), and offer condolences to his family. He passed away this past week, after his two year battle. He had just turned 18 on Sept. 17th. He never lost his faith, and always kept his eyes focused on Jesus. He was and continues to be an inspiration to us all. Have a wonderful week, everyone. Thank God each day for all the blessings in your lives. Hug your children tight, and make sure they KNOW how much you love them, and how thankful you are for them. We appreciate you all, each and every one. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" Hello everyone, thanks for checking in. I am doing this update from HOME!!! We got to come home on Friday evening, after 17 days in the hospital. To quote Dorothy, "There's no place like home...". Zoe (our cat) was nearly turning cartwheels at the sight of us coming in the door. We were just as happy to see her. We had to have a hospital bed delivered yesterday before we came home. It is similar to the air bed that Connor had in the hospital. We tried him on a regular hospital bed on Thursday, but he was in too much pain. We did set this bed up in our living room, so that Connor is more centrally located in the "hub" of activity. We had a nurse come out as soon as we got home last night, to show me how to do the TPN nutrition feedings that he is getting at home. It runs each night from 8:00 pm to 8:00 am. His doctor wants this to continue until his eating picks up enough, continually, to know he is getting what his body needs. His physical therapy has been going well since my last update. Wednesday and Thursday, he took steps with his walker. He also sat in the wheel chair on Thursday on his special Roho cushion for about an hour. Karen, his Physical Therapist, wanted to make sure he could sit as long as it would take for us to drive home in the car. An ambulance could have brought him home, if necessary, but he did OK with sitting. It was made a little easier, because Jennifer, Laurie, Tiffany, and maybe even more that I'm not aware with, with Child Life, arranged a scavenger hunt, just for Connor. So, once he was situated in the wheel chair, the hunt was on. It took us from the 8th floor, to the first floor, the second floor, and back to the 8th floor playroom. At the end, he got lots of great surprises. It looked like Christmas in September. But it did lift his spirits, that's for sure. Thank you to everyone who made this happen! I'm not going to talk much about the colostomy and urostomy, to spare Connor embarrassment, but I do want to share one thing. On Thursday, I had requested that the stoma nurse come by, so that I could change out the colostomy bag, by myself, before we went home on Friday. I wanted to make sure I felt comfortable with it. To our surprise, Connor wanted to do it himself. Becky, the nurse, talked him through it, and he did the entire procedure! We were so proud of him! I want to say THANK YOU to the amazing medical team that Connor has had over the past two and a half weeks. From the nurses on our arrival morning, to the surgeons, anesthesiologists, OR nurses, 8th floor nurses, care partners (Hi Tina!), Child Life staff, especially Jennifer and Laurie, Radiology staff, PICU nurses and staff, EVERYONE played a part in making Connor comfortable. We thank you all from the bottom of our hearts. A special thank you to Kelly, Connor's favorite nurse from clinic, she came up on a couple of different occasions, to his room, to help ease his anxiety. She came up Thursday, at Connor's request, because his port needle needed to be changed, and he is most comfortable with her. Thank you, Kelly! So many people were involved with Connor's care, and we are thankful for each of you. He really bonded with one of his nurses, Dana. She and Connor actually had a "date" on Thursday night, to watch the premiere of Survivor. Thank you, Dana, for the special attention to Connor! Connor will have a Physical Therapist coming out to our house starting Tuesday, for as long as he needs. Hopefully, this weekend and Monday, he will work well with Eddie and myself. I'm hoping that being home with his friends stopping by, will motivate him to work even harder. He really has done such an amazing job! We give God the glory for Connor's remarkable recovery from surgery. It has been a long process, but each day has been better. We now concentrate on starting the external radiation to rid Connor's body of remaining cancer. We meet this next Thursday with Dr. Teng, Radiation Oncologist, to discuss the plan. He will be re-scanned just prior to starting the radiation. We pray, we pray and we pray some more that this is the miracle we have been waiting for. We are living for TODAY. We are thankful for TODAY. TODAY is really all any of us have. When our minds start to wander to tomorrow, we remind ourselves that all we can handle right now is TODAY. God will get us through TODAY, then He will be waiting for us in tomorrow to get us through that, as well. We thank each of you reading this. You have all been so good to us, and we are grateful. A big thank you to Nana and Poppy for all you have done, and for allowing Eddie and me a couple of hours a couple of different times, to get out of the hospital for a while. Colette, my dear, thank you for the beautiful guestbook entries that you leave, taking such time and attention with each one. So many of you have been a continuous source of encouragement for us, and we thank God for you ALL! Thank you for continuing to check up on Connor. Thank you for signing the guestbook. Thank you to those of you who stop by, but maybe aren't comfortable signing or don't know what to say. We are glad you are here, regardless. Thank you to everyone for the gifts, cards, balloons, calls, thoughts and prayers. I must tell you, everyone at Vanderbilt who came into Connor's room, commented on the "decorations" in his room. I put each card he received since surgery on the walls. His room was COVERED in cards and balloons. It was very cheerful. Please continue those prayers for Connor. We are waiting for that earthly healing. We pray that the radiation does it's job. We trust in God to see that that happens. Please keep our friends from the list above in your prayers, as well. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 9-14-04 Hello everyone, thanks for checking in. Connor seems to be doing well. Alot of you have commented on Connor eating the 26 shrimp on Thursday. He actually hasn't eaten much of anything SINCE then. Eddie goes out and picks up whatever he might be craving at the moment, but he doesn't seem to have much of an appetite. He is on the TPN tube feedings now, so I'm sure that just makes him feel full. He did just put in a request for more shrimp tonight, so hopefully he will chow down again. He certainly doesn't need to lose any more weight. Saturday morning, he was sedated here in the room. The doctors took the bandage off his bottom, removed his staples and put steri-strips on, and removed his epidural. Later that day, Karen, his Physical Therapist, came by and worked with him. He sat on the edge of the bed for five minutes or so. Plus, he let us move him into his therapy chair, where he sat for about 45 minutes. He did such a good job. The chair is on wheels, so we were able to roll him around the hall. It was the first time out of his room in 10 days. On Sunday, he sat in his chair for about 5 or 10 minutes, but was hurting too bad, so we moved him back into bed. There is a rumor that we could be going home in a few days. I think he has a ways to go yet, physically, but if we can get him to a going-home point, he can recuperate much better AT home. He is missing his friends, and most of all, ZOE (his kitty), pretty badly. He will be going home on the TPN feedings, until his appetite picks back up to an acceptable level. He will also have to have physical therapy at home. All of that is still being set up. Connor has an appointment on Sept. 23 with Dr. Teng, the Radiation Oncologist. Sometime shortly thereafter, he will be re-scanned in his pelvic area. He will then receive the external radiation. A definite plan for duration and times-per-day has not been determined yet. He will have to be healed up well enough from surgery first. We are looking at around the first week in October for the radiation to start. We PRAY with every ounce of our being for this to be the miracle we have all been waiting for, for the radiation to kill the cancer cells FOREVER from Connor, never to return again. AND, for it to be an earthly healing. We are out of options, medically. That is why we are just trying to think about TODAY, and TODAY only. We will trust and believe that the radiation will do the trick. AND, for the rhabdo to never be able to grow again. Thank you all for being here with us. Yes, we are frustrated. Yes, we are discouraged. But NO, we are not giving up. I know I sound like a broken record saying that, but I always want to emphasize that. Connor isn't giving up, so we will not give up on him. People have asked how he is feeling emotionally, I must say, I think he is doing a fabulous job staying positive. Even with all the changes since surgery, he seems to be adapting as well as anyone possibly could. I am so proud of him, he is my hero. Please keep him in your prayers. We appreciate everything that everyone is doing for us. Thank you, thank you, thank you for each and every kind act towards our family. Please also remember to pray for our friends. Sadie Grace is in Vanderbilt now, just down the hall from us, and is having a difficult time, please pray for her family to get some answers, so that a solution can be found. Nikie is at home, but needs tons of prayers, as well. Jason needs your continued prayers, as he continues his new chemo regimen. Justin just lost his aunt this past week, please pray for his family. Cheyenne is recovering from brain surgery. Lots of children, lots of problems, lots of Moms and Dads wishing they could take their place, lots of prayers needed...... Take care, have a great week, count your blessings, hug your children TIGHT, We love you all! ~Rhonda, Eddie and Connor, our "Bravest Little Trooper"! UPDATE: 9-10-04 **UPDATE**Friday morning The pathology report came in yesterday. He had some positive margins, meaning cancer is still present. The part of the tailbone that was removed during surgery, as the tumor was pressing against it, also had cancer cells in the marrow. The doctors do believe, however, that it WAS confined to the marrow in that one bone, they said it was direct growth and localized. So, as things often do, the plan has changed. He had his last bead therapy treatment Thursday evening, and the tubing was pulled that went into his body to deliver the therapy, while he was still under sedation. He will continue to heal up from surgery. In approximately three weeks, he will have either three weeks of everyday external radiation, or two weeks of twice a day external radiation. Please help us pray about this. The surgeons said that the report brought no "real" surprises to them, but, of course, we were hoping for better news. It was like being kicked in the stomach. This cancer is so relentless, we have to be just as, and even moreso, relentless and diligent with our prayers. The devil is really working overtime trying to bring us down, we have to stay positive. Connor will most likely have to try to sit in a chair some either today or tomorrow. He hasn't been out of bed in a week and a half. He will also require some physical therapy, and we will be going home with continued physical therapy. He will have the epidural turned off later today, to see how he does with oral pain meds. If he still needs the epidural, they can immediately turn it back on. He has had the absolute BEST Anesthesiologist/Pain Control team imaginable. Hopefully, in a few days, Connor can try to walk some. On a much lighter note, last night, when we returned to the room from radiation, Nana and Poppy had brought us dinner. Connor was so hungry, he ate 26 shrimp! He had me count the tails when he was finished. Just thought I'd share that with you, he was so proud! Please keep Connor in your prayers, he has a long way to go yet, and he is certainly not out of the woods. We will continue to trust in God for Connor's earthly healing. Thank you for being here for us! We love you all! UPDATE: 9-9-04 Hello everyone, thanks for checking in! Connor's recovery seems to be going well. Thank you for all the heart-felt prayers for him. He was able to go back on solid foods as of this past Saturday. He hasn't eated a whole lot, so I think they are going to put him on TPN feedings, which he has never done before. He really can't afford to lose any more weight. He still has his epidural in, and it will probably remain for a few more days. We have been raising the head of the bed up some, trying to prevent pneumonia. He will be in bed until the brachytherapy (bead therapy) is complete, which should be Monday of this next week. He started it on Tuesday, having one treatment that day. He had two treatments today. He will have two on Thurday, two on Friday, and two on Monday, and, as of right now, that will complete the therapy. The tubing that is in place now will then be removed, and then more movement will be allowed as he continues to heal. His surgical incisions seem to be healing up nicely. We will be having a stoma nurse come by in a few days to do the teaching for the colostomy and the urostomy. Connor has been opening up a little at a time, and asking me a few questions. I know he will adjust, it will just take some time. He has always amazed us before with his resilience, this time will be no different. The pathology report from the surgery is not back yet. Hopefully we will hear back from it within the next few days. We pray, OH HOW WE PRAY, that this radiation will kill out any and all cancer cells at their root, never to return again! We thank you again for all the support you are giving us. We are so thankful to have such wonderful family and friends. Thank you so much for all the cards, gifts, phone calls, visits, meals, and mostly, PRAYERS, for Connor. We are blessed in so many ways! We also want to thank Connor's entire medical team. He has some fantastic doctors and nurses! Please also keep Connor's grandparents and extended family in your prayers. This is really taking a toll on everyone. But, we WILL get through it, one day at a time. Please, if you can, say a prayer for all of our friends from the links above, I know they would all greatly appreciate it. Peace to all and may God bless us all! We love you! Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 9-3-04 Hello everyone, thanks for checking in! Thank you for the tons of guestbook entries! You don't know how much it means to us to read all of the wonderful words of encouragement. Connor is doing O.K. He is in a regular room now, he was moved Wednesday evening. This morning, he had to go down to radiation for a CT scan for planning of the bead therapy that will start on Tuesday. The tubing was placed during surgery. The therapy will be for a total of seven days, twice a day. But it will not be for seven days in a row. It looks like it will be given for three or four days, with a three day break, then the remaining three or four days. Connor went down to radiation on his bed and was sedated for the test. He will be sedated each time for the treatment, which is good news, as he will be quite sore for quite some time. Right now, the only body movement he is doing is rolling slightly to one side, with pillows placed underneath his back. He stays like that for two hours, then alternates to his back and to the other side. He has the epidural in place, and will likely have it for a while yet. Today is his first day being on clear liquids. He hasn't eaten since Sunday, and is asking for food. But, his body is not awake good enough yet for that. We have to know that his system is working well enough. He has not seen anything on his body that was done from his chest down. When the nurse or doctor is checking it out, he always says he doesn't want to see. But, ONE DAY AT A TIME. He is completely overwhelmed right now, and who wouldn't be with all he has been through. We thank all of you who have stopped by, those who have sent cards, those who have called, those who have brought food, and especially all of the prayers. As each day goes by in Connor's recovery, we are seeing the need more and more for him to be able to rest. We are needing to ask that right now, if you are thinking about coming by to see him, that you call first. He became quite upset today with everything, and the nurse had to put out a 'no visitors' sign on his door. When he gets upset,his stomach incision is aggravated, and it is hard to calm him down. Please try to understand. We are so thankful to you all for wanting to see him, we truly are, but maybe after he heals up some, it will be a more pleasant visit. Right now, he needs "quiet time" more than anything, time to adjust to all that has taken place. We are thankful for you all. So many of you who are praying for Connor might not have ever known of him had it not been for this web site. Please continue to pray for Connor. Please pray for the radiation therapy to kill any remaining cancer cells. Please pray for Connor's physical healing and emotional well-being. We pray that his pain is 100 percent controlled 100 percent of the time. Please pray that Connor adjusts well to the changes that have taken place as a result of the surgery. Thank you all for being here on this journey with us, you could have gotten off the boat at any time, but you haven't, and we appreciate your support. We love you all, have a wonderful weekend, spend some GOOD QUALITY TIME with your family, that is so important! Remember all of our friends and keep them in your prayers as they fight their own battles. Peace to all and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 9-1-04 Hello everyone, thanks for checking in. Just wanted to update everyone, as I know you are waiting to hear how Connor is doing. Thank you, Lu, for the update in the guestbook. Connor came through surgery well. As Lu said, the tumor was the size of a cantelope. They removed it with Connor on his stomach. After that, the Radiation Oncologist placed the tubing, so that Connor can get the radiation bead therapy. They then turned Connor from his stomach to his back and did the colostomy and urostomy. Before finishing up, they put in an epideral for pain control. He did end up having to go the the ICU unit overnight. He was alert, but very groggy last night. They increased his pain meds twice during the night. I had to leave his room this morning for nurse shift change for an hour. When we got back in there, he was awake, with his eyes open. We are concentrating right now on his pain, trying to manage that as well as we can. He did so good this morning, the nurse had to have him roll on his side just a little to get him off his back. He did remarkably well. He is on an air bed, which should help with healing and pain issues. He will be in bed for probably two weeks. I know that sounds like a long time, but the radiation therapy can't start until he has healed up for at least 7 days, then the therapy itself will be for 7 days. The tubing that is placed doesn't need to move around alot. Plus, Connor had quite an extensive surgery, so that healing time will do him well. As far as the cancer goes, the surgeons told us that they "do not feel as good about the margins as they did after surgery last year". This, I understood them to say, is because of the size of the tumor. It was encompassing the entire pelvic area. So, even though they removed the tumor, there could be lingering cancer cells that could not be seen by the naked eye. They did say that the surgery went "as well as could be expected". That is why the radiation therapy is so crucial now, to kill any cancer cells that may possibly be remaining. That is our specific prayer. Plus, for Connor to have a smooth, painfree healing process. We were thankful that Lauren's "Sissy", Jennifer, was in the operating room yesterday with Connor. She did a wonderful job keeping us updated throughout the day. Thank you so much, Jennifer!!! We were so overwhelmed by the number of people who came out in support of Connor yesterday. The waiting room stayed nearly full of Connor supporters. Thank you to ALL OF YOU who sat through those long hours with us yesterday, and for all the phone calls checking on Connor. And, thanks to those who brought food, we stayed well-fed. You all mean so much to us. Please keep those prayers going for Connor. I'll try to update when I can. I do not have a computer in the room, so I'm not sure when I can get back in here. Connor may actually be moved into a regular room later today. Thank you all for being here with us, even in spirit! We love you all! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 8-31-04 Monday, August 30, 2004 9:59 PM CDT Hello family and friends, thanks for checking in. Surgery is tomorrow, in about 9 1/2 hours. We spent most of the day today at Vanderbilt, in preparation for surgery. It was not a pleasant day, by any stretch. We left there at almost 7:00 pm, so we are busy packing now. As far as we know, everything is still the same regarding the actual surgery, if you haven't already read it, you can go to 'Journal History', and read my last entry. I did get the report today from the MRI on Friday. Not good news. The tumor has continued to grow, despite trying the latest chemo. It had grown 3 centimeters in a month. It is no wonder that Connor's pain has been on the increase. The chest CT scan report wasn't in the system yet, so we will find out about that tomorrow. Today was one of those days when you feel as though NOTHING is going right. I know that the devil is working overtime to get us down, hoping that we will not be able to get back up. But, we will not let that happen. Connor continues to amaze me with his strength and resilience in the midst of adversity. He is still fighting, and we are still not giving up. Your prayers are carrying us right now, no doubt about that. So, I want to ask you all to please, please continue to pray for our son. We are going in tomorrow with the belief that Connor's miracle awaits. 'Ask, and it shall be given to you.....' For those of you who have emailed and asked--the surgery will start at 7:30 am, and will be an all day surgery. The waiting room is on the Third floor of Vanderbilt Children's Hospital. When you get off the elevator, the waiting room is right there. I will update as soon as I possibly can. It may be that I have someone do an update for me, after Connor is out of surgery. We know that you all are going to cover Connor in prayers tomorrow, and we are so grateful to you all for that. We appreciate all the acts of kindness on Connor's behalf. Thank you, thank you, thank you. We are blessed! I am including the prayers requests from my last entry: Please pray for Connor, for so many things...... ----his emotional state, that God will grant him a peace about surgery and treatment ----his pain, that the new meds will make it STOP ----the surgery itself--that it goes better than anyone expected, that the surgeons make the right decisions, that every cancer cell is removed from Connor's body ----recovery from surgery--that Connor is kept comfortable, his pain controlled, that he adjusts well to the procedures performed during surgery ---that Connor will remain forever cancer-free, and grow up to be a happy, healthy, well-rounded Christian man! We love you all! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 8-25-04 Hello everyone, thanks for checking in. We are doing O.K., just trying to take things one day at a time. We have been back and forth to Vanderbilt ALOT lately, in preparation for surgery. Connor did complete the five day course of Topotecan/Cytoxan. He seemed to do well with the chemo, never actually getting nauseous-sick. It did wipe him out physically. We are just glad to have it over with. He has already had one platelet transfusion since finishing the chemo, and we anticipate another platelet transfusion, and possibly blood transfusion, on Friday. We just came from the clinic. We talked to Dr. Shankar about pain control for Connor, as his pain has definitely been on the increase in the past several days. We are going to try a couple of new things, hopefully, we can get the pain under control. The next scans will be this coming Friday, August 27. A pelvic CT scan will be at 4:00, a chest CT scan at 4:30, and a pelvic MRI at 5:00. Wouldn't it be just wonderful if those tests all came back clear??? As far as the surgery goes, it is scheduled for Tuesday, August 31st, starting at 7:30 am. It will be a HUGE surgery. There is no way to know how long it will last, as so many things will have to be decided in the operating room. But, we anticipate an all-day surgery. The tumor is, of course, in his pelvic region, in a difficult place to get to. Since this is the third time in the same location, Connor will have to have a colostomy and a urostomy. As difficult as that is to type, we have been told that this is our only chance at saving our child. With the tumor continuing to grow, it is already affecting Connor's bodily functions, and will continue to escalate if we do not act immediately. Believe me, we have looked at this from every possible angle. This cancer is relentless, and we have to be relentless in our fight to rid Connor's body of it. Connor wants to grow up, and live out his hopes and dreams, and we will do everything possible to make that happen. We know that Connor has an outstanding team of doctors, and we trust them completely. We feel like we are making the best decisions based on all the info we have, and based on all the research we have done on rhabdo. Today, we met with Dr. Teng, the Radiation Oncologist. He will be attempting, if possible, to place the tubing for radiation beads, during surgery. It may not be an option, as so much will be removed, they may not have enough tissue left to place the beads, it will be decided during surgery. As overwhelming as this is to us, you can only imagine how overwhelming it all is for Connor. He does not want to talk about it at all. He only knows the basics right now. I have told him that I will give him as much info as he wants. I am hoping that he gets to a point this week when he will ask. It is so hard to comprehend, although he realizes the need for this surgery. He is quite emotional right now, understandably. We will take him in on Thursday to meet with Dr. Brock, so that he can explain some of what to expect to Connor. Connor went fishing with Nana and Poppy yesterday, while Eddie and I met with Dr. Brock. No, they didn't catch anything, but that is O.K. He also got to drive a tractor, ALL BY HIMSELF. It belongs to my cousin Kyla's husband. He was at Nana and Poppy's to aerate their lawn, and let Connor drive the tractor. Connor was so excited when he was telling me about it. We are so appreciative of you all. Thank you for continuing this journey with us. Thank you for lifting us up. Thank you for each and every kind act you have done for us. Thank you for carrying us when we can't find the energy to carry ourselves. Thank you for believing in us all. Thank you for caring for our son, our only child--that means more to us than you will ever know. We thank God for you all. We thank God that he chose us to be Connor's parents. We thank God for each new day. We thank God for his Son on the cross, so that we have the hope of eternal life. We have so much to be thankful for. And we are so thankful...... We love you all! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 8-24-04 On August 20th., we were honored to spend some time with Connor and his parents. Connor had just returned from receiving platlettes and he wasn't feeling well so we did not take pictures of him during our visit. We did however get pictures of Mom and Dad which you will see below. We had a good visit and all gathered around holding hands and prayed for Connor before we left. Connor is just precious beyond words and Rhonda and Eddie were so very sweet. We appreciate them opening their homes to us and sharing their family with us. Before we left Eddie stocked us up on snacks...in case we got lost again...LOL....Elizabeth Rhonda and Me             Rhonda and Eddie UPDATE: 8-14-04 Note: We will be visiting with Connor and his family on Friday... Hello everyone, thanks for checking in. I apologize for the delay in updating. This update will have to be brief. Everything changes from day-to-day, it seems, with Connor's treatment plan. He started a five day course of Topotecan/Cytoxan on Wednesday of this week. He was originally going to get it outpatient the first three days, then be admitted over the weekend, but that changed. He received it the first day in the clinic, and the remaining four days, he is getting it at home. A nurse is coming out each day to administer the chemo. I am doing the IV fluid infusions. Connor has not done anything since this chemo started except lie on the sofa. It has wiped him out completely. He is still in alot of pain, even on his pain meds. After this chemo finishes, he will have to get the Neupogen shots for 10 to 14 days to bring his white count back up. He will then have a CT scan and an MRI of his pelvis. We met this week with Dr. Schwartz (Orthopaedic Surgeon) and Dr. Shankar (Oncologist), along with Dr. Debbie (Psychologist) to discuss surgery. Dr. Brock (Urologist/Surgeon) is still out of town until Monday, so nothing is definite regarding surgery. But, it does seem as though it MAY happen around the 31st of August, or the first week of September. Thank you all so much for continuing to encourage us. It is much-needed, and so very much appreciated. Please understand if I haven't responded to emails or phone calls this week, Connor has needed my full attention. Please, please continue those prayers for him, and for his earthly healing. As difficult as things are getting, we are not giving up, I emphasize, NOT GIVING UP. We are believing in the promises laid out in the Bible, and are asking, trusting, and believing that our prayers will be answered. I'll try to do a more detailed update, as soon as I have more definitive information. Have a wonderful weekend everyone, the weather has been beautiful here for the past several days. Thank God for the blessings in your life. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 7-27-04 We got results back from Connor's tests. The tumor continues to grow. It has grown another centimeter in the past three weeks. Not the news we were praying for. But, we are pleased to say that the chest CT scan was clear, thank God. Please continue to pray for Connor's miracle. With the progression of the disease, Connor's pain and other related problems continue to worsen. We are in a waiting mode this week, as two of Connor's doctors are out of town. We need to act, and we need to act now. I will update with any additional news as I get it, although it may be a few days before I know anything further. Thank you all for the prayers, we will continue to trust in God for a complete earthly healing for Connor. Yes, we are discouraged, I think it would be nearly impossible NOT to be at this point. Watching Connor as he struggles with constant pain has alot to do with that. But, we are not giving up, no matter what. We will fight this with everything we have in us. Thank you all for EVERYTHING you are doing. We appreciate you, and we need you...... UPDATE: 7-23-04 Hello family and friends, thanks for checking in! Connor has been doing O.K. since he got out of the hospital. He got his last chemo on Friday at the clinic. Thank you, Lu and Gabe for coming down to hang out with us. Gabe has scans this coming Tuesday, please say a prayer for CLEAR SCANS. Connor has tolerated this chemo well, both rounds, thank God! We took him to Gatlinburg over the weekend to go back to Dollywood (thanks Bill from Kellogg's for the tickets!). There is also a new waterpark, Splash Country, that is an extention of Dollywood. Connor especially liked the water park, specifically the wave pool. He was in quite a bit of pain on the trip, but overall, he had a great time. It was certainly well-deserved after the week he had last week. Tomorrow (Friday the 23rd)is the day for Connor's next chest CT scan and pelvic MRI. The CT is scheduled to start at 4:30, the MRI at 5:00. Please, please, please say a prayer for these tests, we NEED some encouraging news. Eddie will be in the chapel once again, during the tests. If anyone would like to come by Vanderbilt Children's Hospital to pray with him, you are welcome to. Dr. Shankar is still out of town, so I am certain that it will be the first of next week before we get any results back. I will call on Monday, if I don't hear anything before then, and try to get someone to check the radiology report. I'm not sure when Dr. Shankar will be back, she told me the end of the month. We should be having a meeting to decide how to proceed, as soon as she gets back, if not before. Of course, we were told that surgery is the only possible curative option, and even with that, chances for a recurrence are great. I just feel like we need to proceed immediately, as Connor's symptoms are not improving. Time is of the essence. Thank you for all your continued support of Connor. Please continue to pray for him, for an earthly healing. As I have stated many times, we will trust and believe that God will heal Connor. We are filled with gratitude for all the wonderful acts of kindness to our family. A heartfelt THANK YOU to Nana's work, Albany International, for organizing a benefit for our family. It will be held next Sunday, August 1st, at Meadowbrook Park in Portland, TN, starting at Noon. There will be live music, food, and an auction. We are so thankful to you all for doing this for us. A special thank you to Juanita and Sue for getting this off the ground. We are so fortunate to have such a wonderful support system, we could not do this without you all, near and far. Please also remember all our friends in your prayers, those still battling, those in remission (that they STAY in remission), and the families of the children who have passed on to a better place. We are thankful that Logan had clear scans this week, WAY TO GO LOGAN! Thank you all for continuing to check in on us. We feel the love that you send. I'll let you know as soon as I get scan results back. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 7-15-04 Hello everyone, thanks for checking in! Things have improved greatly with Connor's latest "problem" since my update on Friday. The weekend was miserable, we tried everything imaginable (medicinal) to help him, but nothing worked. On Monday, while in the clinic for chemo, it was decided to admit him to the hospital. We just got home a little while ago. He had to have a feeding tube put in (through his nose) on Monday (thank you, Kelly and Donna, for your gentleness with Connor!!!), then we started the Golytely through the tube to try to help him be able to go to the bathroom. After vomiting all night Monday night, he started to get some relief Tuesday (yesterday) morning, only to have the feeding tube come out around 8:00 am. Of course, it had to be re-inserted. Any of you who have ever experienced someone getting a feeding tube knows how "unpleasant" it is. The first time was bad enough, but yesterday, he vomited the entire time it was going down. He was so pitiful, Eddie and I felt so helpless. But, after that, the rest of yesterday and all of last night was quite productive. He finished up the Golytely (2-plus gallons)during the night. This morning, I loosened the tape on his face, and Connor reached up immediately and pulled that tube right out. We could not believe it. He had his chemo today, and then was discharged from the hospital. We want to send out a THANK YOU to all of Connor's wonderful caregivers from the past couple of days, especially Nurse Sperry and Care Partner Christina. Thank you, also, CLS Laurie, for your help in easing Connor's anxieties. He will go in tomorrow and Friday for the chemo, outpatient in the clinic, and that will finish up the cycle. We are so thankful to God that Connor was not completely "blocked off" by the tumor, as we had feared. The past week has been very trying, to say the least. But God does hear all our prayers, and that is what we have relied on. Sunday morning, we did go to church. Eddie and I went down front to have special prayers for our family. Connor was lying down throughout the entire service, he felt terrible and had no strength. Thank you to everyone who came down to offer us words of support and encouragement. A special thank you to my precious friend Christian, and Meme for helping us, and helping Connor. We love you all! All of you reading this have helped us tremendously throughout this, but especially over the past few days. We KNOW that you all are praying, and God is hearing and answering those prayers. Thank you, thank you, thank you a million times over for all you do! We are all feeling better today, and ready to continue to fight and BEAT this! I have to tell you, there has not been one syllable of complaint come out of Connor's mouth over the past few days. After seeing all he has been through, I can honestly say that I am amazed by him. When I think about just the past couple of days, I wonder, if it had been me, could I have POSSIBLY been even one iota as strong as Connor. I doubt it, I really do. Thank you, God. Thank You for giving Connor just what he needs to continue to fight. Thank You for giving us just what we need to help him every moment of every day. Thank You, God, for choosing ME to be Connor's Mom. I am blessed, I truly am.... A special HAPPY 80th BIRTHDAY GRANDMA CASS! Her birthday was yesterday, July 13th. She is such a special lady, and means the world to me. And thank YOU ALL for being here, for continuing to be here for us. You all give us strength. Please continue to pray for that miracle for Connor. No, we will never give up, God is on our side! His next MRI and CT scan are still scheduled for July 23--CT at 4:30, and MRI at 5:00. Please also continue to pray for our friends who are fighting their own battles, their links are above. Some of the more urgent requests are prayers for Trever, Isaac, Celeste, Kevin, Eric, Cheyenne, LaKota and Michaela. Each child is so special, each battle is so difficult, each family is heartbroken to watch their child go through it, please remember them in your prayers. Also, please pray for continued remission for those who are now cancer-free, and ALWAYS remember the families of those who no longer have their child here on earth with them. Thank God for the blessings He has given you. Thank God for your children, never take a day for granted. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "BRAVEST LITTLE TROOPER!" UPDATE: 7-10-04 Hello friends and family, thanks for checking in. I'm sorry that I haven't updated before now, this week has been an extreme roller-coaster ride. Connor has continued his chemo this week, and will go in tomorrow (Saturday) to the hospital to get it again. He will then go in each day next week, Monday-Friday, and that will finish up this course. He has not had a good week. His pain continues, he has had stomach problems this week, and now he is having problems with constipation. We saw Dr. Shankar on Tuesday. I asked her if she could print me off the MRI report from Friday. I was quite surprised to read: "Since the prior examination, the mass continues to increase in size." According to the report, it has grown approx. another centimeter in the past 3 weeks. I asked her about it, and she doesn't seemed concerned since the growth is not as significant as it was BEFORE he started this chemo. This was a blow to us, as we were under the assumption that there was NO growth, that it was stable. As I mentioned, Connor is having problems with constipation. We BEG OF YOU for specific prayers for this. When he first relapsed on May 7, the MRI was clear enough, even to me, to show that the tumor was already pressing on his rectum. He is constantly asking me to please pray that he can go to the bathroom. I won't go into any further detail on this now, as he would not want me to, just PLEASE PRAY. THANK YOU! As this week has gone by, he is becoming more and more inactive. He doesn't feel like doing much of anything, and doesn't really want to go anywhere. This is so out of character for Connor, so I know he feels quite bad. His next CT scan and MRI have already been scheduled. They will be on July 23. The CT is at 4:30, the MRI is at 5:00 pm. We will probably be having a meeting with Connor's entire medical "team" the week after that, to determine our next step. I pray that this tumor STOPS growing. If his bowel problem continues, that will obviously have to be addressed well before then-- immediately. We are tired, we are stressed, we are on-edge. But, we are greatly encouraged by all of the emails and guestbook entries. It is VERY DIFFICULT for us to talk about this via the phone right now, please try to understand. Please continue to pray for Connor. We will not give up, Connor is a fighter, and we will help him fight, with everything we have in us. On a lighter note, we did enjoy the Fourth of July. We went to Nana and Poppy's and Poppy grilled hamburgers and hotdogs. We shot fireworks there, AND when we got back home. I think Connor actually still has a few fireworks left. Thank you all for checking in. I know this update is not very upbeat, trust me, I wish I had nothing but GREAT NEWS to report. We are trusting and believing in God for a miracle in Connor, we will NOT falter on that trust. Please remember all of our friends who are fighting battles of their own. A few are listed above. We found out this week that a friend of our from Vanderbilt, Nikie, has relapsed. She just had surgery to remove a new spot from her lung. Please visit her site if you can, and offer her some encouragement. We appreciate you all, we are thankful for you and all you do. Thank you, so much, for the cards and gifts for Connor. Have a good weekend everyone! Peace to all and may God bless us all! We love you! ~~Rhonda, Eddie, and Connor, our "Bravest Little Trooper!" UPDATE: 7-4-04 Dr. Shankar called while I was out and Eddie talked to her. This is what she said: The tumor in his pelvic region has NOT grown in the past 3 weeks, since his last MRI. It has also NOT gotten any smaller. So, it is STABLE. Of course, this is not the best news, yet it is a POSITIVE thing that it has not grown. So, it would appear as though the chemo is keeping it at bay. We will proceed on Tuesday with this next 10 day cycle of Irinotecan/Vincristine. Connor also had a chest CT scan. The spots that showed up three weeks ago were gone, but there is a new spot in a different location that needs to be followed up on. So, in another 2 to 3 weeks, he will have the tests repeated again. That is basically all that Dr. Shankar told Eddie. No smaller, no larger--proceed with chemo, then re-scan. Thank you for all the prayers for Connor. We thank God that the tumor is NO LARGER. Please continue to storm Heaven, as we will be doing the same.... UPDATE:7-3-04 Good morning everyone, thanks for checking in! We do not have any results back from the testing that was done yesterday. We HOPE to hear something today, but if not, I guess it will be Monday or Tuesday. The waiting is torturous. We are trusting and believing that we will get POSITIVE news for a change. We know that so, so many of you were praying for Connor while the tests were being performed, and that brings us great comfort. A special THANK YOU is in order for Mr. Wayne G., Rob B., Sarah Jane (Q-Bert's Mommy), and The Thomas family, Helen, Rex and Craig. We appreciate you all taking the time to join Eddie in the chapel. Your kindness is very much appreciated. Connor did very well during the tests. They gave him valium to help relax him, and he cat-napped during the MRI, although he would be quick to tell you that he didn't sleep. But, as soon as the MRI was complete, he asked, "Was I really in here only 5 minutes?" When, in reality, it was over an hour. We were all three completely stressed out last night. On edge, on edge, on edge! Afterward, we told Connor we would take him anywhere he wanted to go to eat, and he chose Cici's Pizza. We made some new friends while eating. Hello Tina and family from Mt. Juliet! We stopped in at Walmart around 10:00, and I ran into a friend of mine from High School. It was so good to talk to you, Melony! Connor and I ended up sitting up until almost 2 am. This computer had a virus, as of Thursday evening, so I have been doing everything I could do to rid it of the virus. I hope I have finally resolved the problem. I could not email or do much of anything on the computer yesterday. I pray everyone has a safe and fun Fourth of July. Hopefully, it will not be a complete washout, as far as rain goes, for anyone. Remember to say a prayer for our troops and our leaders. Also, please say a special prayer for our friends on the menu above. Some of the more urgent requests are directly above the journal. Thank God for the blessings in your life, especially if your children are healthy. We all tend to take things for granted at times, it is human nature. Be mindful of those less fortunate than yourselves. Hug your children a little longer, and TELL THEM how much they mean to you. We thank you all from the bottom of our hearts for your diligent prayers for Connor, and his earthly healing. Please, please continue those prayers. Thank you, also, to everyone for your continued acts of kindness towards us. We want to thank Kelloggs/Keebler for your continued help and support. I will post an update AS SOON as I get news back from Dr. Shankar. Take care, peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 6-30-04 UPDATE--Wednesday, June 30th--Connor's tests did not get scheduled for Thursday, as planned. He will have them FRIDAY, July 2--Chest CT scan at 4:30, and Pelvic MRI at 5:00. We hope to hear something back that night or over the weekend. And we pray that the "something" is that the tumor is GONE. At least, stable or shrunk, so that we can proceed on Monday with another 10 day cycle of Irinotecan/Vincristine, in an effort to shrink it more before surgery is scheduled. Please pray specifically Friday at these times, during these tests. THANK YOU, THANK YOU, THANK YOU! UPDATE: 6-25-04 Hello everyone, thanks for checking in! Well, another week of everyday chemo has almost come to a close. Connor has tolerated this chemo quite well. So far, for the most part, so good! He did have one bout with diarrhea last weekend, which is the main side effect with Irinotecan, but none since. His energy level has decreased some, but that is to be expected. I honestly can't see how he "keeps on keeping on" like he does! In speaking with Dr. Shankar this week, we learned that she is hoping to do another MRI next Thursday, July 1st, on Connor. I will post in this journal when I know for sure what time. We PRAY that the tumor is responding to this chemo. If so, he will have another 10-day cycle of Irinotecan/Vincristine. After that, surgery will be scheduled. Connor's pain is still constant, and severe. We had to change his meds this week, to try to better treat the pain. This is one of the most difficult things for him, and for us. As his parents, we want to "fix" his pain, but we are helpless and unable to do that ourselves. We pray, and pray, and pray for the pain to stop. This is taking a great toll on all of us. Connor is an emotional basket-case, and I am no different. Today (well, Thursday), was an emotionally draining day for the both of us. I try as hard as I can to be strong and positive for Connor, but this is all catching up with me. Please pray for me to be able to stay "up" for him, and to have my "breakdowns" in private. We are continually overwhelmed and gratified by the tons of support for us. Thank you for all the cards, emails, and gifts. A special THANK YOU to the Young and the Restless Sunday School class for the wonderful meals you have been sending us over the past 2 weeks. And, thank you, Christian, for coordinating this for us. It has been a huge help! If we lived to be a thousand years old, we could NEVER repay all the kindness shown to us over the past almost 3 years. Please also pray for Kevin. He has relapsed with cancer after being in remission for about 10 years. His wonderful wife, Linda, has been so kind to us, since our chance meeting last year. They are trying to make some difficult decisions regarding his treatment plan. They live in Goodlettsville, and have 5 children. I know they need the support right now. I have to tell you, as I have a million times before, Connor Jordan Hunley is my hero! Yes, he's my son, and I'm quite partial to him. But, as I watch his struggle day in and day out with this blasted disease, I never once hear him complain. Yes, he is in pain, and that is obvious, but he never asks, "why me?", or anything like that. I am in awe of him, I really am. I pray that someday, we can look back on this, and tell his CHILDREN just how brave their Daddy was throughout this journey. We beg of God each day for another day. We pray for Connor to get his "earthly healing", if that is God's will. It is hard to imagine that after all he has been through, that he would not beat this again. Please continue those prayers for Connor. We are continuing to trust, and BELIEVE, that Connor will be healed, here on earth. Thank you for being here. I hope you all have a wonderful weekend. Don't take one single moment for granted. Hug those children each day, each hour, and tell them just how much they mean to you. Please keep all of our friends battling in your prayers. Peace to all, and may God bless us all! We love you, ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 6-18-04 Hello everyone, thanks for checking in! We are home from the hospital. We came home Wednesday evening. Connor's surgery went well. He is, of course, very sore. He started getting his new chemo Monday night. He got his first three doses while he was inpatient. I have to tell you, SO FAR, SO GOOD. He has not had ANY side effects. PRAISE GOD! We have heard that the effects sometimes strike in the second week. But, we are just so thankful that he is doing so well right now. Yesterday (Thursday), I took him into the clinic for his outpatient infusion of the chemo. We will return today, and every day next week. If all goes well, he will not have to be hospitalized again, due to the chemo. One "positive" about this chemo drug is that he doesn't have to take the Neupogen shots everyday, as he has had to do before. Today in clinic, he will have to get his dressing changed, the dressing that is over the top of his newly-inserted port. He is NOT going to be happy about that, but it has to be done. His pain is definitely on the increase. He now has a fentanyl (Morphine) patch. In addition to that, he is on Lortab, and Tylenol. He wakes up each morning in INTENSE pain. It breaks my heart to see it, yet not be able to take it away immediately. Please pray specifically for the pain to subside. We pray that the chemo start to work NOW on shrinking the tumor. Connor had a good time last Friday, when he went to see Shrek 2 with his friend. Saturday was Nana's company picnic at Beech Bend. Connor got to help pass out bingo cards and he also got to draw out some names for a game. He drew three names out, and one of them was NANA. Thank you everyone at Albany Int. for making Connor a part of your "family". We appreciate all you guys have done for us! The storms hit during the picnic, which was O.K. for a while, because we were inside a building for the meal and bingo. The rain continued afterwards, so we all got a good drenching. We rode out the storm, and the rain FINALLY tapered off. Afterwards, Connor was able to walk up to any ride he wanted, and ride it without a wait, which was nice. The park was deserted. You can look back at the journal history, and read my last journal for details on the game plan for Connor, as it stands right now. We are continuing to pray for a miracle, and believing that one will happen. We are not going to give up, as I have stated before. We are taking one day at a time, and trying to make the MOST out of each day. Thank you all for your continued wonderful support. We are constantly encouraged by the guestbook entries and e-mails. Thank you to all who are sending Connor cards and gifts. He LOVES mail-time. And I LOVE the smile that you all are putting on his face, with the love you are sending him. Thank you, thank you, thank you for all you do. A special thank you to Mary T. and Holly C. for your calls. EVERYTHING being done for Connor and for us is SOOOOO appreciated! Most of all, the prayers. Please, please continue to pray for Connor. ~~~~~~~~~~ Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand. Isaiah 41:10 We are so glad you all are here on this journey with us. It means so much to us to have your support. We wish all you Dad's out there a wonderful Father's Day, whether you still have your child here with you or not, you are STILL a DAD! Eddie's birthday is Monday. HAPPY BIRTHDAY DADDUTHIA! Connor calls Eddie, Dadduthia, and he calls me, Mammuthia. We think it is so cute! Have a wonderful weekend, everyone. Please keep all of our friends in your prayers. So many are having scans this week. Thanks again for everything you are doing for us! Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" UPDATE: 6-14-04 We are getting ready to go to the hospital. Please keep Connor in your prayers. He is extremely anxious about the surgery. He barely got any sleep last night, between the anxiety and the leg pain. Please pray, also, that his tumor IMMEDIATELY starts responding to the chemo. We should be in the hospital just for a couple of days, barring no complications. Thank you all for everything! Please pray, also, for our little friend, Ian, who is dealing with his own rhabdo relapse. UPDATE: 6-11-04 Hello everyone. Thanks for checking in. First of all, thank you ALL so much for storming Heaven with prayers for Connor's latest MRI. I'll get right to it. Dr. Shankar called yesterday with the results from the MRI. There is definitely growth of the tumor. It has grown approximately 2 centimeters in the past month. Of course, not the results we were hoping and praying for. But, we will not let this latest setback discourage us. This is the plan as we know it. Since there is growth, there is going to be an attempt to shrink the tumor with a couple of rounds of a chemo drug, Irinotecan, which Connor has not had(and Vincristine, which Connor has had.) He is scheduled for surgery this Monday at 11:00 am, to insert a port-a-cath. For those of you who don't know, this is a device that will be placed in his upper chest, for chemo, labs, etc. Chemo will be immediately started that same day. One round of this drug consists of everyday chemo for five days, two days off(on the weekend), then five more days of chemo. So, basically, ten days of chemo constitutes a "round". The current plan is to repeat an MRI after that two weeks. Between rounds, there is a week's break. So, the MRI will be during that week. IF there is a decrease in size, or the tumor is stable, we will proceed with the second round (another two weeks of chemo). After that two weeks is up, another MRI will be performed. If there has been response, then surgery will be planned to remove the tumor. Surgery was discussed with us last week, although in the beginning, we were told that it would not be an option. The surgeons are a little more optimistic about it. I have to stress, SURGERY IS OUR ONLY OPTION FOR A CURE. EVEN WITH SURGERY, THERE IS A GREAT CHANCE OF THE CANCER COMING RIGHT BACK. Without surgery, we were told "months left". Eddie and I have struggled with all the info that we have received, and prayed about it. As Connor sat with Dr. Shankar, receiving the news about three and a half weeks ago, for the first time, she asked him point-blank, if he was ready to fight again. His response was, "yes." That is all we needed to hear to vow then and there that we would do whatever it takes, certainly within reason, to HELP him fight. He is not ready to give up, and neither are we. The details of surgery have not yet been discussed with Connor, so PLEASE, make no mention of them to him. As soon as we know, for certain, that it will be taking place, he will be told, but not before. Surgery, in order to stand even a chance of being successful, HAS to include the removal of the tumor, along with, for certain, his rectum, colon, and urethra. There appears to be no bone involvement, so his limbs will be spared. As devastated as we are with these details, we are mindful that this is Connor's only "medical" chance. We could not live with ourselves if we didn't give it a shot. We are trusting and believing that Connor's miracle is yet to come, an earthly healing. We will NOT stop believing in that, NO MATTER WHAT. We will take things one day at a time, as we have been doing, and be thankful for each day. In anticipation of starting everything up on Monday, Eddie is off today, so that we can make the most of this weekend. We are planning to take Connor to Nashville Shores today, to swim. He was invited to see Shrek 2 tonight with a friend of his in our neighborhood. Tomorrow, he and I are going with Nana to Beech Bend in Bowling Green, for Nana's company picnic. He will have a full day of fun, fun, fun! All he knows, and has wanted to know thus far about Monday is that he will have a port put in. He cried when we told him, he remembers how much he hated his port before, it was constantly tender. Plus, he told us last night that his friends would make fun of him. We ASSURED HIM that that will NOT be the case. We will talk to his friends ourselves, to make them aware of the port, before they see it for the first time. He had an incident this week, where one of his friends told him that he was a "sissy, because his Mom rubs his legs for him every night". This made me SO ANGRY, because Connor is in constant pain in his legs, yet NEVER COMPLAINS. The only possible way for him to be able to drift off to sleep every night is for me to massage his legs. To think of how brave he is, and then to have someone call him a sissy just made my blood boil. So, the next day, after I had calmed down, the boy came over and I was able to sit him down and have a long talk with him. I detailed some of what Connor has been through, and continues to go through. I told him how disappointed I was to hear what he had said. He just sat there and took it all in. Apparently it went well, as he is the boy who has invited Connor to a movie tonight. I can't TELL you how excited Connor was to know that the boy could choose ONE PERSON, and he chose Connor. Thank you, God! Thank you all for your continued support. Thank you for all the cards and gifts you are sending Connor. Thank you, most of all, for all the prayers being lifted on his behalf. We beg of you to PLEASE continue those prayers. UPDATE: 6-9-04 Connor will be having his pelvic MRI today--June 9th--at 12:00 noon. This MRI will be compared to the one from a month ago, when it was determined that his cancer was back. Please, please pray for his miracle. Wouldn't it be the most wonderful thing if they look at the MRI, and find NO SIGN of cancer?!? His bone scan and bone marrow tests were both clear, thank God! His chest CT scan showed a couple of "very tiny spots". He will be re-scanned in (probably) two weeks. We PRAY that the spots are INFECTION and not rhabdo in his lungs. I will update as soon as I have any new info. Remember--Wednesday, the 9th at 12:00 noon CST. THANK YOU!!!!! UPDATE: 6-8-04 Hello everyone, thanks for checking in! First of all, we appreciate SO MUCH all of the guestbook entries of support for Connor. Thank you all for your continued support. I'm sorry if I haven't responded to them all, just please know that we read them, each and every one, and they bring us much encouragement. This past week was spent winding down from our trip. Sunday afternoon, we took Connor's go-cart up to Nana and Poppy's for him to ride it up there. He had a big time on it. Monday, some people in our neighborhood called the police, so he had to stop riding it to his friends' houses. Now we have a track around our house, but that is O.K., he is having fun, that is all that matters. Wednesday evening, Connor was the Guest of Honor at a party given by the folks at Kellogg's. It was kind of a Welcome Home party after the trip to Disney. It gave everyone who had not had the opportunity to meet Connor, the chance to meet him and spend time with him. It was held at the Hibachi Grill at Opry Mills. We all had a blast. The food and service was great, then we moved on to the bowling alley and the game room. Connor was very nervous at first, but soon opened up and had a great time. Everyone with Keebler was wonderful to us, and made us all feel so at ease. Dan Leonardi, VP of the Southern Region, presented Connor with the 'Southern Region Vice President's Award in Recognition of his Courage, Strength and Inspiration to Others'. I received a dozen beautiful red roses, just for being Connor's Mom, which, by the way, is my greatest honor! They presented all three of us with some really cool racing jackets. Thank you, everyone, for making it such a special night! Thank you, Nana, Sherry, Grandmama, Tammy, Ragan, and Victoria, for attending with us. Thursday, Connor had to go in for his Bone Marrow Test. Nurse Kelly did the test, thank goodness. Kelly, you are, as I told you, such a blessing to us. Kelly has such an amazing relationship with Connor, and all the kids. They trust her beyond words. There has never been a more caring, gentle person as Kelly. Connor was so nervous before leaving home, but when he found out that Kelly would be doing it, his apprehension eased up considerably. His marrow was drawn out from both sides of his lower back, and will be biopsied. We should find out results tomorrow (Monday the 7th). After the test, we met with Dr. Brock and Dr. Pietsch, two of Connor's surgeons from last year. Providing that all of the tests from his marrow, bones and chest come back clear, there may be a surgical option. If the cancer is anywhere else other than the primary site, surgery would NOT be an option. There is no way to speculate until we know for sure about the tests. On Friday, Connor had to be back at Vanderbilt for the bone scan and chest CT scan. We were there most of the day. He did so well. I feel so sorry for him, having to have so many things done, but, he never complained once! The nurse in Radiology who puts in Connor's I.V., Michelle, is just wonderful with him. He actually wanted to hang out with her while Eddie and I ran upstairs to get some lunch. We ran into Dr. Shankar while we were up there. She told me that she will call me tomorrow with results from all the tests. IF all are clear, Connor will most likely be having another pelvic MRI on Tuesday. It has been one month since the MRI that showed the return of his cancer, so we need to see what, if any, changes have occurred in the past month. I know this is all confusing. It is to us, as well. It just comes down to this. Surgery, if it is an option, is the only possible "Curative" option that we have. Even with surgery, there is a great chance of the cancer coming right back, Without surgery, we would have to travel elsewhere for clinical trials, as Vanderbilt is not currently offering any that Connor would qualify for. We WILL go to the ends of the earth, if that is what it takes. Chemo and radiation, we have been told, at this point would be palliative, or "buying time". Eddie and I have tough decisions to make. This is all so overwhelming right now. Connor is giving us strength with his attitude towards everything. The child never slows down, even when he is in constant pain. I know I've said it a million times, but he is MY HERO! I'm so proud of him, and his zest for life. I will try my best to keep you all informed the best that I can. We need you all, I really mean that. We continue to trust in God for a miracle. We know they are out there, so that is what we are praying for. A wonderful friend, Colette, put the following quote from Martin Luther King Jr. in the guestbook: "I have held many things in my hands, and lost them all. But whatever I have place in God's hands, I still possess." Thank you, Colette, for that timely reminder. I think that says it all. We will trust and believe and keep the faith! Thank you all, once again, for your presence. Thank you for everything that you continue to do for us. I'm trying to work on thank-you's. I'm sorry that I am so behind on EVERYTHING. We are just winging it right now, trying to do anything and everything that Connor wants to do. Please continue to pray for all of us. Pray for Connor's symptoms to disappear. Pray for all the pain to go away. Pray for an earthly healing. Pray for strength for us. Thank you, thank you, thank you a million times over. Peace to all, and may God bless us all! We love you! ~~Rhonda, Eddie and Connor, our "Bravest Little Trooper!" ADDED: 1-31-02 Condition: Relapsed rhabdomyosarcoma--rare childhood cancer. Comments: We have been praying for Connor since 1-31-02 but only had a link to his page on caringbridge. His mother has requested a page be added for him here. History: Click here for history.