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January 2008 1/14/2008 | We arrived home safely this weekend. We were blessed by Corporate Angel Network that found a corporation from SC that flew up to New York for the sole purpose of flying John and I home. We are so fortunate that we get to meet so many amazing people that are so generous. One evening while John and I were out at supper, a lady walked up to John and complimented him on how well he was behaving during dinner. We got to talking about life and John's condition and recent birthday and the next thing I knew she handed John something and said "This is for you". As we walked out of the restaurant, John handed me the money she had placed in his hand and asked me to keep it safe for him. Such a simple act, but what a blessing to John. On another evening we were able to have dinner with a couple John and Dinki had met on a previous trip. We ate at John's favorite restaurant, Finnegan's Wake. John was feeling a little tired but was a good trooper and enjoyed his supper with the Foster's. We also were able to visit my cousin Christine and her husband Carlos and their family in Brooklyn. We had a great time playing and visiting and are always blessed by their generosity and kindness. I usually leave there worn out from wrestling with there boys, what a great time! John is feeling great and seems to be all over his cough and cold. He had several tests at the hospital to determine if there has been any change in his disease and we expect to get the results from those tests in the next week. | 1/2/2008 | Tomorrow John and I (Rick) will be in New York preparing for his CT and MIBG tests, as well as another week of 3F8 treatment. Please pray for all of us as difficult things keep popping up in our lives that we cannot seem to get past. I appreciate all of you that so faithfully pray for us. | 12/20/2007
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This morning we received the sad news that John's friend Ellie Skees passed away last night. For those of you that don't know Ellie, she was diagnosed with NB about the same time as John last year, but was eight years old. Her battle with the deadly cancer lasted about fifteen months and last night she put on on her Angel Wings and flew home to Jesus Her family had been asking all of us to pray that Ellie's wish of passing away in her sleep would come true. She awoke for the last fifteen minutes of her life where she was comforted by with her mom and dad. She fought one last heroic time and then quickly passed away. We talked to John and his brothers about Ellie this morning. Later in the morning I couldn't find John so I went and looked in his room, where he lay in his bed crying and missing Ellie. He and I talked awhile and just hugged on each other. It's truly a sad day for those of us left behind, but a wonderful day for Ellie as she is free from the pain and suffering of cancer. You can read more about Ellie at: http://ellieskees.blogspot.com/ The following is from an unknown author but best expresses what I feel now: THE CHOSEN ONE
Not just any child could walk this uphill road. These children walk it everyday, carrying a load.
They show us heights of courage that we may never reach. They show us what it is to fight; a fight you cannot teach.
We stand beside them knowing there is no guarantee. Except the one we started with, to love them endlessly.
They are the special chosen ones, God knew it from the start. He picked each child for Cancer by measuring their heart.
The ones that measured biggest would someday face a test. The challenge is to understand God loves them more not less.
He's using them to move our hearts closer to his own. Teaching us to trust his plan and fear not the unknown.
For God can move a mountain, and part a raging sea. He wants our struggles offered up and give forth to Thee.
He smiles upon the chosen ones before they're ever born and blesses them with courage to walk through any storm.
His love surpasses ours and cannot be denied. For in the dark of suffering His light will not subside.
No matter what the outcome, there is the greatest peace in knowing deep inside their hearts; HIS LOVE WILL NEVER CEASE.
Please say a prayer tonight for your kids then the our kids, and especially for the Skees family.
| 12/13/2007
| A lot can happen in a year. For that matter, a lot can happen in a couple of days. Life can seem to be running a course we think is fairly predictable. The obvious seems like just that; obvious. Each step holds a key to the next. We expect certain things because we have followed a certain formula. Then, there is a split second where nothing is as it seems. The obvious is not the obvious. And the expected is definitely not the outcome we hoped for. This was our life one year ago today. John’s awaited test results changed our lives forever. We were completely unprepared!
Let me tell ya. What we heard on December 14, 2006, was not what we were prepared for or even what we expected. Prior test results led us to believe the cancer cells were contained in John’s primary tumor. The MIBG scan revealed what the other tests did not. John had Stage IV Neuroblastoma, needed a stem cell transplant, and had a 50% chance of living. It was more than two parents could withstand alone. Praise God we haven’t faced it alone. All of you have faced it with us. Consequently, we are eternally grateful for the part each of you has played in helping our family fight this battle with cancer.
We have learned. God is not a formula to be figured out. His ways are not our ways. (Isaiah 55:8,9). We only need to trust His plan and lean on Him. He holds our future. It’s not supposed to make sense. We’re just supposed to be obedient to His call because the focus is on Him; not us. We are to be used as a tool and an instrument for His glory. Fortunately, John understands that.
A few months ago, John and I were in Office Depot. I was digging through the clearance items at the front of the store. John was just a couple of feet away playing near the glass vestibule. He walked over to me and asked me to come look at something. I proceeded to follow him. He got right up next to the glass and asked me to look at his faint reflection in the glass. I told him I saw his image. He said, “You see, Mommy, I really do have a spirit.” This little boy truly sees His Father’s hand on his life. May we all see His hand on our lives as we trust Him with the unexpected.
| 12/13/2007
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Cookies for Kids Cancer Today a mother's dream came true…to bake and sell 96,000 cookies to provide hope for her son and all of the other children fighting neuroblastoma. Due to the overwhelming support of so many generous people we are happy, and sad, to announce we have sold all of our cookies.
It has been an inspiring effort by so many and we are humbled by the response to our cause. Our goal was to raise a small part of the $2 million needed to fund the development of a new treatment at Memorial Sloan-Kettering Cancer Center for our children. With the dedicated help of hundreds of volunteers and generous supporters, we have managed to do just that.
We have a long way to go to reach the $2 million needed to fully fund the project and to realize the dream of providing better odds of survival for our children. Please consider making a donation in lieu of cookies by visiting our donation page.
Words cannot express our thanks enough, but here it is: Thank You Merry Christmas to all of you
| 12/10/2007 | Dinki and her friends bade it back safely from there trip to Banner Elk. Everyone in the family is healthy and we are preparing for a special event: John will turn Seven on Saturday (12/15). If you'd like to send him something, you can mail it via USPS to: John Sumrall PO Box 37088 Charlotte, NC 28237 | 12/2/2007
| Dinki and a couple of her friends have taken a well deserved getaway up to the mountains of Banner Elk, NC. This is the home of Grandfather Mountain and many other beautiful places. Please pray for safety as they return home on Monday. Thursday we had some surprise visitors from Rayville, LA. This is the town where Dinki went to High School and where she and I were married sixteen years ago. 
Papa and Grandma Morris have been like a second family to Dinki and me As you'll see from the photo below, John is doing great. John's birthday is coming up shortly and he will turn 7 on December 15. 
| 11/27/2007
| John had a runny nose and a cough for a few days but seems to be over it now. James also was suffering from the same is beginning to feel better. Please pray for all of us to stay well during this time of year when the weather changes so rapidly from day to day. Thanksgiving was quiet. The kids enjoyed playing and visiting with some friends in the morning, then we shared a nice meal together that evening. For the past couple of months I have been back at work full-time. Wy work at the office is causing me to travel quite a bit in the next few weeks as my workload increases. I am praying that God will allow me to be home more and travel less. Homeschool is going very well this year with the kids and it is amazing how fast they learn things. Dinki runs a tight ship and each morning they are handed out there assignments for the day. It's fun to watch them learn.
| 11/13/2006
| One year ago today, our lives changed forever. Dinki and John were entering an imaging facility in Charlotte, NC. A liver ultrasound would reveal a "shadowing" either on John's right adrenal gland or his right kidney. There was a small sense of relief that after months of intermittent pain and vomiting, suspicions of a deeper problem were validated. This sense of relief was short lived as we geared up for the journey ahead of us.
Rick was in Washington, D.C. at the time. He quickly made an overnight trip back home to be right at our side as we faced the upcoming days. It is overwhelming, now, to realize just what our future held. For a mom fighting for her son's life because she would not accept pad answers or medical conclusions drawn by assumptions added to given information, she persisted beyond her own comfort zone to challenge the medical community about exactly what was ailing her son. Who, but God, really knows how far John's disease (cancer) could have progressed if it wasn't for Dr. Bill Martin's listening ear. He took this mom very seriously and listened intently to her every word. He did not discount her pleas for help. Dr. Martin greatly assisted in pursuing answers we so desperately needed. Thank you, Dr. Martin.
For you see, John was asymptomatic Neuroblastoma. It's not something that would have been directly identified. God truly directed our steps in the quest to find a diagnosis. Once again, we are reminded how much God is in control. We are, also, reminded that God misses NOTHING! [Ephesians 1:11] Oh, how we love Him! | 11/8/07
| Update from Dinki: The week has gone well. John has bounced back from his morning treatments with added energy. God is watching over him through your mighty prayers. Many of these children don’t fair so well. One little girl from Florida had a bad reaction to her 3F8 on Tuesday and landed in the PICU. She is better and should be admitted to the floor next week.
There are many relapses here, too; some familiar faces and some not so familiar. One little boy from Illinois is receiving his 14th (last) 3F8. They have been coming to Sloan regularly (every 8 wks) for two years. He remains NED. There are success stories. Yet, they are few and far between in this world of Neuroblastoma.
We know who holds those success stories. John reminded me of that very thing this week. In another one of our “spiritual” conversations, we were talking about the BEST PLACE EVER. Both of us agreed it was HEAVEN. I told him, “You cannot go there before me. I get to go first.” To which came John’s quick reply, “Mom, you don’t get to decide. God does!” As I held back the tears, once again, because he will not let me cry in front of him, I totally agreed with him. John is acutely aware of who holds his future. God is in control; NOT us. We are secure in John’s future because God holds his future. John is a child of God and on loan to us. We pray fervently for God to extend that loan. Ultimately, God decides. John gets it. Early on, he told me that God loves him more than I do and it was hard for him to explain it to me. Little children are so precious in His sight!
Tomorrow is our last day for 3F8 cycle #5. The plan is to return the early part of January for scans and 3F8 cycle #6. We are walking through treatment and making divine appointments along the way. May we rise to His calling of His greater purpose in the midst of our own pain and suffering. Afterall, Jesus came to serve not be served. Matthew 20:28 We are all blessed beyond measure. | 11/5/07
| Update from Dinki: The first day back on the 3F8 routine went well. Mondays are, typically, slow getting started. This one was no exception. Our primary nurse was back from her wedding and honeymoon from early September. We had missed her then. We embraced momentarily, then, got down to business.
John had pain with the usual amount of meds to manage it. He is such a trooper. He has decided to step away from the liquid Tylenol and can, now, swallow the pill. Recently, he switched another medication from liquid to the pill. Kids shouldn't have to deal with these things so young. They should be deciding which toothpaste tastes best or which sport to play, not if their meds will be liquid or pill form. The staff was delighted to see him and talked about how much weight he's gained. It looks like more than there is. Hair must do that for ya. He weighs 41 pounds. Considering he dropped down to 35 pounds back in May, we are delighted with 41.
We rested for a couple of hours back in our room at the Ronald McDonald House before finishing the evening at Finnegan's Wake Pub. It's right on the corner (approx. 50 yards from the House). John absolutely loves their sirloin. He makes two meals out of it. And you know how great that is with the prices in NY. 3F8 and steak! Not a bad deal. We will begin again bright and early in the morning. | 11/4/07
| Dinki and John had a safe flight to New York with Corporate Angel Netwotk. John's treatment got started a little late this morning but it wasn't unusually difficult for him to tollerate. We hope to get them back home Friday evening.  John played "Go Fish" most of the flight up to NY. He also got to go up to the cockpit area and see all the instruments during a night flight, which he has never got to do before. 
Mrs. Loui played cards with John and took great care of everyone. She won at almost every single game she played, she was amazing. Thank you Loui for taking such good care of everyone!
| 10/31/07 | Dinki and John are scheduled to fly up this Friday to New York for John's next 3F8 treatments. He'll start treatment Monday and hopefully they will be able to fly back home Friday afternoon. His treatments usually start around 8:30 and last until around 11:00a. They will be repeated daily (M-F) We all would appreciate it if you could please pray for his comfort and reduced pain from the 3F8 treatment during these hours as well as the effectiveness of the medicine at wiping out any remaining cancer cells. | 10/30/07
|  Once again we are face to face with the death of another child taken from this world by neuroblastoma. This is the fourth child we personally knew who has passed away in the past two months. These children have earned there Angel Wings and are no longer suffering from this horrible disease.
Click on the angel to the right to see these brave young souls. | 10/27/07
| Last weekend we went camping with our church for a few nights. The kids all had a great time and John had no problem keeping up with everyone, as he had plenty of energy. It was nice weather and a great chance to be away for a few days. We are counting down the days until John has to go back to New Yotk for another week of Antibody (3F8) treatment. He goes up for the week of November 5 - 9. The treatments last about forty-five minutes to an hour, but they are extremely painful for John. He rarely complains during his treatment but they often bring on cold sweats, hive, rashes and other indications of the extreme pain that he is in during the treatment. The treatment is given once each morning and he is usually done by noon. He has been so brave throught these painful experiences. He just hops up on his hospital bed and says something like: "We just have to do, what we have to do, to get better." Out of the mouth of children comes such wisdom. Jesus said: "I thank You, Father, Lord of heaven and earth, that You have hidden these things from the wise and prudent and have revealed them to babes." Matt. 11:25 | 10/6/07
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