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| Previous entries 3/30/07 | John seemed to be happier and feeling better today. He's having trouble with pain in his legs when he walks to/from the bathroom, but we attribute that to the fact that he has spent about three weeks in a hospital bed. Some friends, the Franks, dropped by and played games with John and just hung out for a while with him. James got to go have lunch with his special friend, Ms Brenda. Afterwards, James went over to some of his friends house to play and have supper with them, thank your Roger & Hiroko. George got to spend the afternoon with his friend Kyle and they had a great time. I spent the afternoon attempting to recover some data that got wiped out on one of our laptop computers while we were in New York. I was installing some software upgrades and a malfunction caused it to wipe out all of my data, including all the photos taken while in New York and some financial and email correspondence that I need. The recovery process is slow and time consuming, but I'm hopeful that I can get back the most important files. John's rash looked like it is still spreading, so they are doing some additional tests to try and figure out the problem. We really think that until his body can rebuild his white blood cells back, the rash will be an issue. With a good white blood cell count, John's body can defend itself from the rash and other infections. - Please pray for John's white blood counts to increase and that the rash and other issues he is having would be taken away.
| 3/29/07 | John spiked a fever twice Wednesday night. Our oncologist says this is common for someone with such a low white blood count. They will discontinue the first antifungal drug and give him a stronger one. They will continue to monitor his fevers and the antibiotics will continue. The good news is. All of his blood cultures have come back negative. We are still waiting on the results of the endoscopic procedure.
His attitude and overall outlook have changed for the better. He was very discouraged and unhappy when we first arrived. We have made some adjustments and he seems to be responding well. In addition, the medicine is doing its job, just at a very slow pace. Even the nurses here at CMC were concerned about him. They know John to be a jovial, positive boy. He has several favorites, but he had become irritable with them, too. The nurses here are wonderful! They have been so patient with his recovery.
We are delighted to be together as a family again. Absence does make the heart grow fonder. The boys are turning into fine, young gentlemen. A dear friend came to stay with John yesterday while the rest of us took a break from the normal hospital routine. It was a welcomed breath of fresh air for all of us. Thank you Sue. We are blessed beyond measure to have such an amazing support group. We are truly seeing the body of Christ at work. All of you are a testimony! We could go on and on sharing stories about how God has met a specific need by each one of you. Just yesterday, we took the boys out to eat on a gift card provided by the Berryhills. Another dear friend cleaned our home. It was delightful coming home to that. Support and service are defined in many different ways. There are so many names we can’t even begin to mention here. So many things are being done to help us, yet we can't think of one that has been duplicated.
Now to give credit where credit is due: We attribute all of John's positive progress to the Lord and the prayers of faithful warriors such as you. Please know how much we need you and could not traverse this without you. In NY, we were thrust into a large environment of Neuroblastoma patients. There are so many stories to tell. One remains constant. Treatment can be delayed often for months at a time because of illnesses incurred while counts are low. One family was in the hospital for six weeks because their daughter got chicken pox. Any somewhat, minor illness to you and me is major to a cancer patient. Their bodies do NOT have what it takes to fight off anything. It's one of the reasons John's healing from this rash is taking so long. Based on John’s current state and the rash having spread further, he will likely be in the hospital a few more days. Several friends like Matthew and the DeCoste girls recently dropped by to help cheer John up and it really does lift his spirits. Here are the latest photos
| 3/28/07 | John had a pretty good night last night and his rash seems to have stopped spreading and maybe even improved a little . His attitude was very bad today and he was hollering at the nurses and refusing to take his medicines. It hurts us to see him feeling so bad and too also be completely out of control. I had a long talk with him this afternoon to try and help him understand the difference between crying because he is in pain and speaking unkindly to others. We have not got any final results on any of the cultures or blood tests, so we still aren't sure what is the source of the problems. His fever kept going up and down today so we are not out of the woods yet. It doesn't look like he'll get home before Saturday or Sunday at the earliest.
| 3/26/07 | John had a very long day. The doctors wanted to get a better understanding of why he was having such a tough time with his throat. This afternoon they did an endoscopic procedure where they put a camera down his throat and stomach while John was under anesthesia. The pictures they showed us explained the extreme pain. His throat and esophagus were very red and bleeding in quite a number of places. Most likely it was a response to the last chemotherapy treatment, but they took a number of samples to send off to the lab to determine if it is something else. They have given him some throat spray to help comfort him until it can heal. With his white blood cell count so low, it may be Friday or Saturday before he can come back home from the hospital.
Please pray for the healing of John’s throat
Please pray for the clearing of the rash/fungus that has spread over 30% of his body
Please pray for the rest of our family to have endurance and just the Peace of God in our hearts.
We had so hoped that the two weeks we were planning to be at home in Charlotte would be a time of rest, but it appears there is another plan. We are scheduled to return to New York & MSKCC some time around April 2 - 9, depending on how John recovers from these current problems and how he regains his strength and blood cells. He had to receive a platelet transfusion around noon today because of low blood counts.
His brothers James and George came up to the hospital today and cheered him up some by playimg with him. Although it was a long day, there were some happy times too. 11:00 PM Here's an update I just got from Dinki, who is staying with John tonight: John seems to be doing better this evening. He ate two cookies and two popsicles because his endoscopic procedure numbed his throat. He is, also, receiving nutrition through his I.V./port over the next 24 hours. The oncologist said this should help improve his healing overall as his counts come up. This has been somewhat of a roller coaster ride trying to find out what is going on inside of his body with his immune system so suppressed.
Life cranks up again. As I am updating this, his fever just spiked. They are drawing labs for blood cultures, again. I know all of you are already praying for our precious son. And I cannot begin to tell you all how much we feel your prayers and appreciate them. This is becoming an unbelievable roller coaster ride. However, I am continually reminded how much God is in control.
1 Peter 1:6-9
In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.
God is Big Enough!!! Rejoice with me as we choose life each day in this journey. May He be glorified as He lives in, and through, us!
Love,
DINKI Click here for the latest photos
| 3/24/07 | This afternoon I finally made it back after driving our van and house hold essentials from Manhattan to Charlotte. George and James arrived back with my parents from Baton Rouge. We all drove straight to the hospital and although both vehicles traveled over fourteen hundred miles, we both arrived at John's bedside near 5:30 pm within ten minutes of each other. We serve an awesome God as he brought us all back safely home after being eleven states away from each other (LA to NY). Shortly after we arrived, all of us gathered around John's bed in the hospital and prayed for his sickness to leave. Later that evening, one of the elders and his wife from our church stopped by to share encouraging scriptures with John and to anoint him with oil and pray for him. It was difficult for me to leave him to go home tonight, but we decided it best if Dinki stayed the night with him. When I left they had just given him a dosage of morphine to help with the pain and some ointment to help with the itching. His rash has been expanding further on his body and has moved from just his pelvic area up his abdomen and towards his chest. It has also has broke out behind his ear. The doctors believe it to be some type of fungus. He is having great pain swallowing anything and we believe he has gotten a number of sores in his throat. The hospital staff is trying to determine the source and nature of the rash, but the culture samples taken can take from forty-eight to seventy-two hours to produce results. We need your prayer for John: - Prayers of thanksgiving that Dinki and John were able to fly home with Corporate Angel and be back in Charlotte when the fever broke out instead of in the van with me six hours from NY or Charlotte.
- Prayers of thanksgiving that his fever has broken and is staying down.
- Prayers of thanksgiving that we were all able to arrive home safely and be reunited as a family.
- Prayers of healing for John's rash and throat sores.
- Wisdom for the doctors and other health care personnel caring for John.
- That all of our sleep would be multiplied such that we would be refreshed and be able to sing praises to God on Sunday for his marvelous works.
| 3/23/07
| John and Dinki arrived home safely on the Corporate Angel flight and got back to our home in Charlotte around 3:00pm. My parents are bringing back George and James from Louisiana and they will be home tomorrow evening. Johns began running a fever a short time ago of between 100.8 and 102. Dinki is currently on her way to take him to CMCC to be admitted. They will begin administering antibiotics to John right away, and take blood samples to try and determine the source of the infection. 1. Please pray for the temperature and infection to be totally taken away from John. 2. I still have about seven more hours of driving before I am back in Charlotte, please pray for my safe travel back home. I have decided to stop overnight at a hotel, as I would not get home before 4 or 5 AM. We love you all so much and so appreciate your help and support
| | 3/22/07 | John's white blood cell counts are at zero and he just finished receiving a platelet transfusion. We still have to see a dermatologist as John has gotten a very bad rash in his pelvic area that they are concerned about. He complained about it most of yesterday and we had to take him to the emergency clinic last night. He also woke up in the middle of last night screaming about the pain and itching. We have seen God work so many miracles in John, we are asking for another here: Please pray with us for the following: - John will not get sick or get a fever
- John's rash will clear up quickly and he will be able to sleep good tonight
- That his appetite will return so he can regain his strength.
- A safe trip for all of us as we travel back to Charlotte via plane and car.
We have arranged a flight for John and Dinki through Corporate Angel tomorrow at 1:00p. If he doesn't have a fever, he will get to fly back home to Charlotte on a private jet and be home by 3:00p. I will drive our van back to Charlotte and get home very late Friday night or early Saturday morning.
| | 3/21/07 | John came home yesterday afternoon from the hospital. He had a good night's rest and is getting back to his old happy self. We have to go back to the hospital Thursday morning for a checkup with John's surgeon and his oncologist. If everything checks out, we'll head back to Charlotte Friday. We'll probably be home only a couple of weeks before we have to come back up here for John's fifth chemo treatment. | | 3/18/07 | John finished his chemo at noon today. He has, once again, done very well. However, he has had a loss of appetite. They think it is because of the surgery, not the chemo. A precious friend shared some Cheetos with him this morning. It's the first thing he has had to eat in several days. This same friend helped John begin a Star Wars Lego project. She is a Neuroblastoma patient from Orlando, FL. You can read more about her story at http://ellieskees.blogspot.com/
We had a visitor this afternoon. Ms. Donna, a co-worker of Rick's that works out of the District of New Jersey, drove in to see John. She is a cancer survivor and can really relate to what John is experiencing right now. Her presence lifted all of our spirits. Funny thing, John had asked for a visitor toward the latter part of the week. God was so good to honor his heart's desire.
John has continued to run a fever. They are taking every precaution by taking blood cultures and started him on antibiotics. This will, more than likely, delay our discharge. We should know more tomorrow. God is in control! As we were reminded this week from another family who is here from Asheville, NC, fighting another type of childhood cancer, God does not blink. He is here, and He knows every facet of our journey. May we rise to His service with joyful hearts. Click here for the latest photos | 3/17/07 | The doctors are telling us that John may be discharged from the hospital on Monday. That's goood news, as he's recovering so very well. He's doing fine with his chemo this time and has had no problems with nausea. He is very irritable lately and has not been his usualy happy self the last couple of days. Considering all that he has been through, it's amazing he has done so well. Clearly God has his hand in John's life. Since we are hoping to drive back to Charlotte next week (3/21 or so), it would probably be best to send any additional packages to Charlotte, as we may be gone before they arrive in NY. - We would ask that you pray he get his appetite back, as he has not been eating much the last few days.
- Please pray for his attitude to improve
| | 3/15/07 | John got up and really moved around a lot today. He's in good spirits for what all he's been through. He and I played the Wii and enjoyed some good father son play time. Our favorite Wii games were fishing and cow riding. They began his chemo treatment this evening and it will run for seventy-two hours. He currently has a fever of 99.5 and we are praying for that fever to go down. We could get to return to Charlotte some day next week if John continues to recover so well. Here's John sleeping tonight: 
| 3/14/07 | John got up and moved around more and more today and was transferred to a shared room, as he is progressing well. The doctors are amazed at his progress and are talking about him possibly beginning his next round of chemotherapy tomorrow or Friday. James and George arrived safely in Louisiana at my parents house. It has been great being here together as a family in New York these past few weeks, but the older boys needed a break from the constant hospital trips. They are used to having wide open spaces to run and play. We miss them already, but know that we will all be back together as a family soon. As I sit here eating my bowl of Honey Nut Cheerios for supper, I'm so thankful to all of you who have reached out and held our hands through this life changing process. Thank you for your unending care and love that you have shown to us in so many ways. I look forward to the day I walk through the streets of heaven and have many of you come up to me and introduce yourself and share how you prayed for John and our family. Or perhaps you have never had a chance to have a relationship with a your loving heavenly father and are unsure if you will ever see heaven when you die. I encourage you to seek Him, for he can be found. Click here to learn more | 3/13/07 | John had a challenging day today as he had to get out of bed and sit in a chair, walk down the hall and back and generally be mobile. It was a long tiring day, but he got all of his extra drainage and catheter tubes removed so he is much more comfortable now.  The day ended with a fantastic treat for John. Tasi, a young man I met through newyork.craigslist.org stopped by the hospital around 6:30 tonight with a special treat for John. He gave John a Nintendo Wii Sports game system. It was such a special and unexpected treat that we were all speechless. The WII systems are almost impossible to find in any stores and for Tasi to donate the system to a young man he had never met really moved my heart.
Tasi was also kind enough to hook up th entire system for us and explain how it works. It was such a selfless thing for a stranger to do for us. May God truly bless you Tasi for your kindness to our family. John was able to play golf, bowling and baseball tonight on the WII and had a great time with it. Thank you Tasi for your generous gift. The wonderful thing about the WII is that in order to play the games you have to swing the controls around. For example, to hit a baseball, you have to swing the controller like a bat. This causes John to be much more mobile and while he is being entertained, he's also giving himself physical therapy. John moved out of intensive care this evening and continues to recover well. In a couple of days, John's two older brothers, George and James, are flying down to Louisiana to stay with my parents until we are able to return to Charlotte. They have enjoyed the visit to NY, but it is becoming quite a strain on us all due to the constant trips to the hospital. This temporary change will alllow us focus our energy on getting John well from surgery and through his upcoming chemotherapy treatement. | 3/12/07 | John continues to remain in the intensive cae unit. Last night he had a good bit of pain and discomfort but by this morning he was resting comfortably. He even felt up to playing some vieo cames on the computer for a short while. 
| 3/10/07 | John is recovering very well. He had his ventilator tube removed this morning and is breathing completely on his own. The doctors have been amazed at how fast he is already rebounding from the surgery. Here are the latest photos. | 3/9/07 8:15p | John's surgery was a sucess and although he lost a good bit of blood, his vital signs are very strong. He is being bandaged up and prepared to go to the ICU for a few days to recover. He will return to a normal room sometime next week to continue his recovery. The surgeon was able to remove the tumor and all residue. John will be on a ventilator for two or three days as he recovers. Thank you Lord Jesus for bringing John safely through this surgery. We give You all the Praise and Glory. | 3/9/07 6:45p | John continues to do well in surgery. They have removed the primary tumor and are now cleaning up additional areas of malignancy. We expect the surgery to continue for another couple of hours. Thank you for your continued prayers for John and the medical team taking cae of him. | 3/9/07 1:30p | The sugery began around 1 pm and we have not heard anything yet. We will probbly get an update around 2:30p on how things are going. He went under anasthesia fine and was smiling when we left him. | 3/9/07 10:30a | John's blood counts came up this morning amd we are on schedule for surgery at 11:15AM this morning. He is feeling and looking good and has a great attitude about the whole surgery process. | 3/8/07 | We spent most of the day with John at the hospital going over tomorrows operation. The doctor shared with us that this is a major surgery and is life threatening due to the location of tumor around some vital veins and blood vessels. We have to be at the hospial at 8:00 AM tomorrow and John's surgery is scheduled for around 11:30 AM. John is in very good spirits and is looking forward to the surgery so that he can get the tumor removed and get well. The surgery could last from four to twelve hours. They handle each surgery uniquely and cannot predict the length of time it will take to complete they surgery. John will spend several days in an intensive care unit recovering after the surgery. - Please pray for a complete removal of John's tumor. He will be losing his right adrenal gland, but the surgeon hopes to leave his right kidney. John can live a normal life with the other adrenal gland which is located on top his left kidney.
- Please pray that John's white blood count is up high enough for him to have the surgery. When they tested him at 8 this morning, it was rather low. He was given an injection of Neupogen today which should boost the number of white cells, but if they are not high enough, the surgery will be postponed.
We heard back from out insurance provider, Aetna, today and they have denied our request to have MSKCC paid at the network provider level. We still have an appeals process that we will be pursuing and the surgeon has asked the MSKCC hospital administration to try and help work this out with AETNA. We are confident in God's provision to provide in a unique way that none of us would have ever expected. | 3/7/07 | My older brother Randy and his family made it here safely from Louisiana and we were able to spend the day visiting with them and seeing some parts of Manhattan. We are all healthy and tomorrow morning at 8:00 AM we will be meeting with John's surgeon to go over the surgical plan to remove his tumor that is located on his right adrenal gland. He is scheduled to have surgery on this Friday, March 9 at 9:30 AM. the surgery may last anywhere from five to twelve hours. John will then recover in an intensive care unit and once he is doing better will be moved to a regular rrom. We expect to be here in New York for at least two more weeks. Click here for the latest pictures | 3/6/07 | We've spent the last four days reconnecting as a family and enjoying our break from the hospital. George, and James have had special time with Dad. Those outings have been a treat. They have found some incredible treasures. We've ventured out very little as a family. It is imperative to keep John well. Our pre-surgery meeting with the surgeon is Thursday morning. Surgery begins very early Friday morning.
John was called in this morning for blood counts just to make sure all is progressing well. John's counts are good. Rick took him and gave Mom a break. Brrrr! It is frigid outside. Most of you know how Mom feels about cold weather. (She can't handle it.) We have a great Dad!
We continue to be blessed by our church, family, and friends. Packages and cards come in at a steady pace. We feel so encouraged and loved. Makes one feel like that first semester in college. One gets down to the business at hand as the encouragement (packages and cards) trickles in. You know this is the right place to be and the right thing to do. It's hard to be away from everyone. Yet, we could not ask for better support. All of you are wonderful!!!
We are still waiting to hear back from our insurance company. We thank you again for your prayers. Also, my older brother and his wife and two children drove up from Louisiana and we will spend the next few days visiting with them between hospital appointments. We've not seen them in quite a whiles, as they have been in the mission field in South Korea the last two years. What a treat! | 3/1/07 | The stem cell harvesting went very well for John. They collected cells yesterday and today and got a very large harvest. To collect the cells, they hook John up to a special machine and all of his blood flows throught it and the stem cells are seperated from the rest of his blood and stored for John's future needs. The rest of this blood is returned to his body and he left the facility fwwling good and running and playing. The process takes about three hours a day and is not uncomfortable for John. This afternoon John and I built LEGOS while his cells were being harvested. Under the National Medical Excelence program that MSKCC participates in, his stem-cell harvesting is being covered by our insurance company at the "in-network" rates. One of our concerns is that for all other procedures at MSKCC Aetna will pay only up to seventy percent of John's medical fees using what Aetna calls "reasonable and customary" amounts. For all other services rendered here (surgery, future chemotherapy treatments, radiation, 3F8 antibody), we are responsible for the remaining thity percent of the fees. Based on our experience over the past three months, we know that our portion of these fees can quickly exceed twenty or thirty thousand dollars. Dinki and I wrote Aetna an extensive letter explaining John's condition and the reason that MSKCC is the best place for John to receive treatment. Aetna has the option of making an exception for John and approving MSKCC to be paid at the same level as a participating provider. We wish to give thanks for the following: A safe trip up here and a safe place to live here at the Ronald McDonald house.
The many packages and cards that we've received while here to encourage us.
That James and George are being helpful and reallly doing well under these conditions.
That we have felt very safe travelling around the city and have not had any problems with personal safety.
Please pray for the following:
John would continue to stay healthy as we prepare for him to have Surgery March 9 so the original tumor can be removed. That Aetna would look favorably upon our request and approve MSKCC to be paid at the participating network level. That Aetna would approve travel expenses as we continue to travel to New York over the next year. For an increase in family prayer time and biblical teaching of our children. We have been so busy with the things related to this cancer that I have at times lost sight of the goal of raising Godly children. .
Thank you our dear friends for partnering to pray for us and support us. We would also welcome any financial contributions, as the cost of living here in NY is substantially higher that that of Charlotte.
| 2/28/07 | Today is a big day for us! At 8:00 AM they hope to begin harvesting John's stem cells. It's a painless process, he just has to sit in a room for three or four hours while the equipment removes the stem cells from his hickman port. We had a night out on the town last night at Fao Schwartz then supper at a local diner. It was a treat to get out of the room for an evening, as some times the room feels exceedingly small. Click here for the latest photos and videos | 2/27/07
| Sorry guys! It's been a while. We spend most of our days at MSKCC. He had a CT scan the other day and did fine with it. So far, John has had his blood counts checked every day. He was Neutropenic (no immune system) over the weekend. We were pretty much quarantined to our room. If we got out, John wore a mask. John continues to do very well. On Monday, the doctor said, "He really bounced back from the weekend. Beautiful!" We give God all of the glory. We increased John's Neupogen (medicine to increase his blood counts) last night. This morning, John was almost ready for his harvest. We will go in at 8:00 am in the morning to begin. There is talk of moving up his surgery if his counts continue so well. Life has changed for us. The Ronald McDonald House is a very generous home away from home. Friday afternoon, Kozy Caps let the children pick their own chemo hat. Spectacular styles and colors covered the table. James and John chose the same style, but different colors. They are true brothers at heart. Friday night, Rick and George were able to attend a NY Knicks game and thoroughly enjoyed it. Sunday afternoon, students from the Swedish Institute donated their time and expertise to the residents for an upper body massage. The battle of childhood cancer begs for any relaxation one can find. Last night, dinner was brought in from another local restaurant. This happens quite frequently which saves us time and money. We have met several families here fighting this horrible disease (Neuroblastoma). One is from South Africa. Another is from England. We truly are at the best place in the world for research and treatment. So, once again, we want to thank all of you prayer warriors for rallying with us. You all are critical to us through this. I feel at a loss for words when I sit down to type these messages to all of you because I don't know how to tell you just how precious you are to us. YOU MATTER!!! We want to give God ALL of the GLORY!
| | 2/23/07 | John had to get a red blood cell transfusion this afternoon. He's white count is very low and therefore extremely vulnerable to all infections. Please pray that John does not get sick and get an infection. We want him to stay well and strong so he will be ready for his stem cell harvesting as soon as possible. The disorder of white bloods cells is called Neutropenia. Our days are very long and busy as we end up spending almost the entire day at the hospital, then get home just in time to eat supper and get to bed. With all of us sharing a single room, we all have to go to bed at the same time so we don't wake up the children. We are still trying to figure out some type of schedule that works for us living under these conditions. we are thankful to have the Ronald MacDonald house to stay at. John is continuing to get his nightly Neupogen shots and has been doing well with them. George and James and I were able to get out Wednesday with one of my cousins, Christine, and her family for a few hours. She took us to visit Cloisters and we had a great time in the museum and having snowball fights outside. i was outnumbered eight kids against me, but I somehow mnaged to hold my own against them. It was so good to see Chris and her beautiful family after so many years. There's a slight chance that George and I may get to go ice skating in Central Park this evening, it all depends on how John is doing.
| | 2/22/07 | We are all doing well, the Ronald house is incredible. Please pray that John does not get sick, as his white blood cell counts are extremely low and he is very susceptible to sickness. Everyone appears to be sleeping much better, including me. Thank you for your continued prayers for us. | | 2/20/07 | We arrived safely in New York this morning and had no problems on the drive up from Charlotte. We got checked into the Ronald McDonald House and have been over to Sloan-Kettering for John to have some blood work run. Everyone is feeling good and we are thankful to all be here safely together. We are espcially grateful to out friend Brad who drove us here all the way from Charlotte. It was a blessing to not have to drive in Manhattan. | | 2/18/07 | John got to come home Saturday morning around 11. He has been feeling fine and has not had any problems since we have been home. He spent a couple of hours today outside jumping on the trampoline. Tomorrow evening we will all load up the van and head off to New York. We expect to be gone for aout three or four weeks. We will be staying at the Ronald McDonald House a few block away from the Sloan-Kettering hospital. We are so thankful to the Lord that John's last chemo treatment went so well, as he seemed to breeze through it. Please pray for us as we travel to NYC Monday night. It will be very close living quarters for the next month, but I pray we will be drawn even closer together as a family during this time. | | 2/16/07 | John continues to do well with his chemotherapy treatment and we hope to go home Saturday morning. We got the results from the CT scan that was done on Monday - his tumor growing out of his right adrenal gland has shrunk to less than half of it's original size. This is what we have all been praying for and we are so thankful to God for what he is doing for John. It will be a very busy weekend as we prepare to take our entire family to MSKCC in New York on Tuesday (2/20) for about a month for John to have a variety of treatments done. Initially he will have his stem-cells harvested, followed by surgery to remove his tumor. Then he will have his fourth chemotherapy treatment there. We are grateful for all that Dr. Dan and the wonderful staff at Carolinas Medical Center staff have done for John to date. Click here for the latest photos and a couple of movies | 2/14/07 | We've all had a good Valentines day and John is not having any problems with his chemo treatment. Thank you for your continued prayers, as he'll continue on the chemotherapy until Satruday morning. Please click here for the lastest pictures | | 2/12/2007 | We had a great weekend and everyone is well and in good spirits. I took all three of the boys out tonight so they could shop for Valentine gifts for each other and Dinki and I. It was the first time that John has been out shopping since he started his chemotherapy back in January. It was so precious to see them all hiding their baskets from one another so they wouldn't see the Valentine gifts they had picked out for one another. John goes back in the hospital tomorrow. He has to have some tests done in the morning and will then check in to the hospital in the afternoon to prepare for his next chemo treatment. He'll start his chemo Wednesday morning and will receive three days (72 hours) of chemotherapy. We plan on celebrating Valentines day as a family Wednesday morning at the hospital. I've arranged for a Masseuse to come by the hospital room Wednesday evening and provide a massage for Dinki and I to try and help with some of the stress we are under. The many decisions we must make concerning John's care and so much uncertainty can be overwhelming to us. While we know that God is in control and is over all things, our weakened flesh has to deal with all that is happening around us concerning our precious son. Would you please pray for this treatment that John starts Wednesday to be a strong destroyer of the cancer in John's body? I would also ask for your prayers for me (Rick) that I would be able to sleep some through the night. It has been several weeks since I have been able to sleep more than four or five hours at night and I'm beginning to come unraveled. | | 2/10/07 |  Don't tell her I told you, but Dinki's birthday is TODAY (Saturday). Happy Birthday Sweetheart! It is through Dinki's determination and following her God given intuition that we were able to discover John's cancer so early. Her continuing to pursue the specialist after he diagnosed him as just having a "irritated stomach" is what led to the ultrasound that uncovered the tumor back on November 13, 2006. Thank you Dr. Martin for believing in us and helping us find this tumor! John had a checkup Friday and his oncologists said he is doing very good. He will go back to the hospital on Tuesday for a CT scan, EKG, Echocardiogram & then stay for chemotherapy. They plan to give him IV fluids Tuesday evening and begin his chemotherapy treatment on Wednesday morning (valentines day). This third chemotherapy treatment will be the same as he received during his first round of chemotherapy back in early January. Following his cheomtherapy treatment, he will be home for a couple of days and then we will be traveling back to New York to have his stem cells harvested at MSKCC so we will have them available if John needs them for future treatments. We are unsure at this time how long John will need to remain at MSKCC for this procedure. Click here for information on stem cells transplants Once back from the stem cell procedure, we plan to return to MSKCC for John's surgery to remove the remainder of his tumor that could not originally be taken out. Dr. LaQuaglia is said to be the most experienced surgeon in the world at removing neuroblastoma.
| | 2/8/07
| Several days ago, John returned to his "clown" self. Those of you who know him know he can be quite comical. It has been an incredible blessing to see him laughing and eating again. Watching your child go through this battle of cancer is heart wrenching to say the least. We are extremely grateful for these days of joy. We relish each one. Corporate Angel is incredible! We are grateful to many people who work together to make this organization a success and a huge blessing. Children with cancer are offered amazing opportunities to travel to remote hospitals through the generosity of these large corporations. This was John's first time on an airplane. Monday afternoon we showed up at a private airport hanger, where we were ushered inside to a comfortable, relaxed atmosphere. The pilot came in shortly after our arrival and introduced himself and told us that he was warming up the interior of the plane and would come back for us shortly. Soon we were driven out to the plane and escorted aboard and seated comfortably. John and I built various cars and trucks with a box of Knex that a family had sent to John for the trip. After building Knex aboard the plane for a short time, the corporate executives that were travelling boarded, greeted us and asked if there was anything that we needed to be more comfortable. We then sat down and had a short flight to New York. The trip back to Charlotte on Tuesday afternoon was equally pleasant.  By traveling this way, John completely avoided the crowded air terminal and all exposure to viruses and sicknesses that are often found in large gatherings. We also did not have to sit on an airplane with others coughing and sneezing around John. It was a true blessing to keep John well during the entire trip. John loved it! He may have some trouble flying commercial after this wonderful experience.
Memorial Sloan Kettering Cancer Center (MSKCC) provided answers to many of our questions. Dr. Brian met with us us for over two hours and answered any and every questions we brought up. Nothing was off limits and we were never rushed to finish up. We felt very comfortable talking with him about John's care. Treatment for Neuroblastoma is very challenging; even at the best facility. We were, once again, reminded how rare John's disease is and how diligent they are in researching it. MSKCC sees approximately 150-200 Neuroblastoma patients a year. In the early 90's, there wasn't much hope for a child with this disease. There have been great breakthroughs in research and treatment. However, there is still a lot to be learned. You, definitely, have to be committed to these kids to do this. It showed. We were impressed with the Neuroblastoma team at MSKCC.  We are facing some difficult decisions. Please partner with us in prayer about John's third cycle of chemo, a stem cell harvest, additional testing, a second surgery to remove the remaining part of the tumor, and the possibility of antibody treatment. We want God to be glorified in all that we say and do through this entire process. Your prayers will help us do just that. We want to thank all of you for praying. We could not traverse this without each and every one of you. [James 1:2-4]
| | 2/4/07 | It was a difficult weekend for us, as John seemed to stop vommiting, then start back up. Today went well and John seems to be stabilized and is running around and being his old self. Friday we managed to have our usual family night and played Mouse Trap and o ther games that evening, it was a good distraction for us. Some friends from church came over Saturday morning and helped me move some furniture around. They also took on the thankless task of helping me clean out our garage. The last few months have been so hectic that rather than put things where they belong, I have just been shoving them in the garage. Thanks to their hard work, I can now walk through the grage without tripping over something. Thanks guys! Tomorrow we will take off to New York to meet with the doctors at Memorial Sloan-Kettering Cancer Center (MSKCC). MSKCC sees more neuroblastoma (NB) cancer patients than any other hospital in the world. Most major hospitals treat only six or seven cases of NB a year, where as MSKCC treats thirty to forty children per day. The chemotherapy protocol for NB that is in use throughout the United States is referred to as the Sloan-Kettering N7 protocol. The chemotherapy treatments John has received to date in Charlotte are the same therapies he would receive if at MSKCC. It is our desire to have John's upcoming surgery done by the surgeon at MSKCC, as he operates on more NB children and can remove things that other surgeons less familiar with NB can do. The purpose of the surgery is to remove the remnants of the tumor that has been shrunk by the chemotherapy. MSKCC also offers an antibody therapy that works better for some children than stem-cell transplants. The antibody is not yet offered at any other facility. The antibody would be given to John near the end of his chemo treatments to help his body fight off any residual NB. | | 2/2/07
10:30AM |  John has now gone about 14 hours without vomiting. He slept all night last night and has been able to eat and keep down food this morning. This is a huge answer to prayer for all of us. Thank you.
I wanted to share the results of James putting his aquarium and fish up for sale on eBay: A group of families in the Charlotte area bid and sent $377 to James for his aquarium auction. The generous gift of these anonymous families will go to help pay John's medical expenses. Thank you to all of you that bid on and contributed to this, we never expected anything like this. Once again we are humbled by your generosity. | 2/1/07 |  It was a beautiful snowy day in Charlotte. James, George and myself got out and played in the snow and sledded down our dirt hills. John sat in the upstairs room and enjoyed watching the snow fall and his brothers play. It didn't seem to bother him that they were outside playing and he was inside.
Click here for pictures We took John into the hospital this morning and they gave him some IV fluids to try and boost his energy and strength. It helped quite a bit, but John spent most of the afternoon over a basin throwing up. He seems to be okay and is sleeping now. We are going to Sloan-Kettering hospital in Manhattan Island, New York on Tuesday. We are flying out Monday evening, and returning Tuesday evening. We are meeting with the doctors to have them evaluate John and discuss stem cell transplant and antibody therapies, as well as the upcoming surgery to remove John's tumor from his abdomen. Please pray that John gets over his vomiting and can get his strength back to travel Monday afternoon. | 1/31/07 | John has thrown up several times this afternoon. He's scheduled for a check up with his oncologist tomorrow morning, at which time they'll test him to make sure he's not dehydrating. John made it through the night with no problems. Thank you prayer warriors for helping us get through this last week of fever and treatment. It's so good to have all of us at home. Praise be to God, the author and finisher of our faith! 
John sleeping at home | 1/30/07 | 7:00 PM We are home from the hospital with John! John vomited most of the night last night and felt pretty lousy. He has been able to eat some ice chips and has not thrown up since about 8:00 AM. We may get to take him home this evening if he continues to keep everything down. He really wants to go home tonight, but we want to be sure he is strong enough so we don't end up right back here at the hospital. | | 1/29/07 | John had trouble with vomiting most of last night and earlier this morning. He is very weak and has been given a red blood cell transfusion to try and strengthen him and raise his red blood count. Until he is able to hold down fluids and/or food in his stomach, we will continue to stay at the hospital. He may get to go home tomorrow (Tuesday). | 1/28/07 | 07:30 PM John has had a long day and has had several instances of vomitting. He has had a good attitude through all of it and continues to be our happy little boy through all of this. They will check his red blood count again in the morning and if all is well, we will be coming home tomorrow before noon. Click here for current photos and videos 08:00 AM We are so excited to report that John's red blood cell count has remained at 7.6 and at this point he will not need to receive a blood transfusion. Thank you Lord Jesus for this answered prayer. Some kind folks from The Make-A-Wish foundation came by to see John Thursday night. Earlier we had asked John if he could have anything he wanted, what would it be. He told me he just wanted a green Lego Bionicle. The Make-A-Wish group brought him two green Bionicles and John was very excited. They encouraged John to think really big and to come up with an idea of something he wanted to do, somewhere he wanted to go or something he wanted to have. John couldn't think of anything he really wanted, so they said they would come back and see him in a week to see if he thought of anything. What do you think John should wish for? Click here to send John an idea to help him with His wish 
John with Lego Bionicle from Make-A-Wish | 1/27/07
| John has thrown up a couple of times today, but has quickly bounced back after each episode. His spirits are good and he has had a good attitude through all of this. He has begun to get weaker than we have seen him in a while, as he has lost his appetite to eat. John's red blood cell counts have dropped to a relatively low level (7.6) and if they continue to drop, John will need a blood transfusion tomorrow or Monday. While we are not opposed to John receiving blood if it is needed, our desire would be that he not require it. Please pray for the following for John: - That John's red blood cell count will stay at it's current level or go higher. His next blood test will be tomorrow morning around 6 AM and if it drops below 7.0, it will be necessary for him to receive a blood transfusion.
- That John can regain his appetite and his strength.
- That the chemotherapy medicine will attack and destroy all the neuroblastoma cancer cells and not damage John's good cells.
We had some family members from Louisiana come in for the weekend to help us during John's chemo treatment. We hope to go home from the hospital around 8pm tomorrow evening. God continues to take care of our precious son and provide every breath he receives. | | 1/26/07 | 4:30 PM John is continuing to do well with the chemotherapy. So far he has not had any problems and is actually feeling very good so far | | 1/25/07
| 09:00 PM - John had a good day & has tolertated all the chemo very well. John has not had any nausea or problems so far, please continue to pray for him through this four day treatment. ------------------------------ All of John's test came back negative for any infections and he had a good night with no more fever. We found out this morning that John will have four days of chemotherapy treatment starting today at 1:00p. We originally understood this treatment to be three days, but today learned will last four days. We have learned that when it comes to medicine, we must be very flexible, as things rarely occur as expected. The two chemotherapy medicines that John will receive during this treatment are Etoposide (VP-16) and Cisplatin. Please pray with us that the chemotherapy medicine will attack and destroy all the neuroblastoma cancer cells. We are also asking for a hedge of protection to be placed around John so his healthy cells and vital organs are not harmed by the chemotherapy. These are stronger chemo drugs than John received during his last treatment and have some significant risks. The major risks to John are kidney damage and hearing loss, as well as low blood pressure and nausea during the treatment. Click here for current photos
| | 1/24/07 | John and Dinki had a good night last night at the hospital. John's fever has gone and he is resting comfortably. The boys and I are going up this morning to play with him and spend some time together at the hospital. If you'd like to send John an email he'll receive at the hospital, please click here. | 1/23/07
|  John started running a fever this morning of about 101.5 and we had to admit him to the hospital around 1 PM today. He's resting comfortably and enjoying watching some old Pink Panther episodes on TV. The current plan is to treat the fever with some antibiotics for a couple of days. They have also sent some blood samples to the lab to try and see what the nature of the infection is, but the lab cultures take up to forty-eight hours to grow. If John recovers quickly, we will just stay in the hospital and begin chemotherapy on Friday.
| 1/21/07 |  We had a great weekend together as a family, so great that we were able to take John to church this morning. This is the first time in close to two months that we were all able to be at church as a family. John's class at church made him some very precious cards.
Wednesday afternoon we will take John back to Carolina's Medical Center for his second chemotherapy treatment. From Wednesday night until Thursday morning, they will hyrdrate John well with IV fluids. Thursday morning around 9 they start John on his next 72-hour chemotherapy treatment. The chemotherapy he receives this time will be different that the first treatment he received . Some dear friends came over to our house and entertained our boys and cleaned our house for us. Dinki and I were able to go have lunch together at a local restaurant and spend some time reviewing the week. It was a real blessing to us.  James decided tonight that he wanted to sell his aquarium and fish on eBay. And as only our precious James could do, he said that if he made more than five dollars selling it, he would give the rest to help pay for John's cancer expenses. For James, that's a big sacrifice, because he doesn't easily part with any of his money. We are all learning and growing through this experience. Click here for James's aquarium on eBay.
 We had some other close friends stop by and say hello on Saturday. We always enjoy seeing our friends and spending time with them during this difficult time.
| | 1/19/07
| Today we had a great checkup with John's oncologist. We will go in next next Wednesday (1/24) afternoon to start John's second chemotherapy treatment. We learned quite a bit about the stem cell transplant process and some of the inherent dangers that it brings. We are praying for wisdom to determine if we should go with a stem cell transplant or an anitbody therapy for John. There are a couple of facilities in North Carolina that offer stem cell transplants. The stem cells are harvested from John's body, then frozen and later added back to his body to help rebuild it. There is an excellent video that explains the entire stem cell transplant process on the page link below. Click here for information about stem cell transplants. John had fun today with chemo duck. John has Hicman line that he gets his chemotherapy treatments through. Three times a week John has to have his line flushed to keep it from clogging. today John decided that Cheo Duck needed to have his line flushed too. Click here for video of John & Chemo Duck 
| | 1/17/07 | John's blood test from today revealed his white blood cell counts are signficantly up, to the point that he no longer requires the nightly Neupogen shots. This is a great blessing, as the nightly shots were difficult for all of us. | 1/16/07
| John had a great day today and smiled and laughed throughout the day as his hair continued to fall out. This afternoon he asked me to shave off the rest of his hair. It was a difficult thing for me to do. You see, so far all the changes in John have been primarily on the inside of his body or things only his immediate family could see. When I look at him now, I see the same heart of a child that I did last week, but my heart cries out for the changes I see on the outside. As I gave him his Neupogen shot this evening, it was all I could do not to break down in tears thinking of how brave this little boy has been. I made a video from John tonight that I wanted to share with you... Please click here to watch the video and see latest photos. A few weeks ago Dinki and John were looking through a prayer card book that a friend made for us. Each of the prayer cards contains a scripture and a small picture to help John remember the scripture. As he flipped through the pages, he came across the following picture and told Dinki: "Look mom, that's God holding my heart in his hand."  | | 1/15/07 | This morning we noticed some lose hair on John's pillow. His hair has started to fall out due to the chemotherapy. John is not upset about it, but is actually having fun playing with it and combing it out. God has given this little boy such a wonderful spirit through all that he has been going through. We had a great visit this weekend with my Mom, Dad, sister Rebecca and my daughter Jodie. George, John, James and all were so excited to get to see my daughter and sister, as it has been since June when we last saw them. My dad was a real help too, as he fixed several things around the house that were in need of his experienced touch. Click here for photos from the weekend | | 1/13/07 | John had another appointment with his oncologist yesterday morning. Woo Hoo! He had a fabulous report. On Monday, his doctor requested he gain weight. Well, he's gained two pounds. He has not had any mouth sores and only thrown up three times. His doctor said, "He's done better than 95% of most kids." John has done remarkably well. Please take a moment and praise God with us. We see His mighty hand all over this precious child. However, please do not abandon the battlefield. This is only a small part of our entire journey. John is doing so well because of each of you. WE NEED YOU! Do not think for one minute your prayers are not being heard; and answered. They are. And we want each and everyone of you to know just how significant you are to us in this journey. We could not possibly do this without you. We know it and acknowledge it. So, here's our huge THANK YOU from the oldest to the youngest! God hears you! [Isaiah 65:24] Ultimately, God is the most significant part, but we have to let you know how you play into it | 1/11/07 | We had a great week and John is feeling good. His brothers, George & James have been enjoying the family time. Dr. Dad administered John's daily shot for the first time today and he tolerated it well. It's amazing the strength that I receive when I have to deal with difficult medical challenges. Tomorrow John goes for a checkup and another blood count test at his Oncologist's office.
My mom has been here for the past two weeks and has been such a blessing to have with us. My dad, sister Rebecca and daughter Jodie are coming in from Baton Rouge, Louisiana this weekend to visit. Mom will be going back home with them when they leave on Sunday. 
I (Rick) returned to work this week after being out of the office for almost two months. My employer has been very understanding of our needs and we are so grateful to them. I'll be able to take off additional time when John has the next treatment around 1/25. Dinki and I are doing well through all of this and it has drawn us closer together as a husband and wife. While there has been tension between us during some of the more stressful moments, Jesus has given us the grace to hold each other up, rather than tear each other down. I am so grateful to have Dinki as my friend and wife, no man could ask for a finer helpmeet and mother. | 1/9/07 | Today was a long day. James (8) is having trouble adjusting so some of the changes and our irratic schedules. James is more sensitive than his brothers and when his day doesn't have a fixed regiment, it tends to throw him off. James enjoys playing the piano and riding his dirt bike. John had no vomiting today and generally ate well. George is enjoying listening to music, playing his guitar and playing with his brothers. Today the boys got a new gift called a Nerf Cosmic Catch. As a techie, this toy really caught my eye as the ball knows what color each player wristband is and talks to the players and tells them what color to throw it to. If it goes to the wrong person/color, it beeps and eliminates them. It's a lot of fun, because up to six players can play the game. We had the whole family going at it tonight for about an hour. I've added a number of photos and links that are available here: Click here for new photos and pictures | | 1/8/07 | John had a pretty good day today, except for a couple of vomiting spells. He's been playing with his brothers and is feeling good otherwise. He will get a shot every day for the next ten days, which is going to be very hard for us all, as Dinki and I must learn to administer them. The shot contains a medicine called Neupogen, that will build up his white blood cells. Would you please pray for him to stop vomitting and be able to tolerate his daily shots? | | 1/7/07 | John had a good night and is coming home this morning! | | 1/6/07 | John had another real good day today. His first round of chemothereapy should end tomorrow morning around 9 am. He will probably get to go home tomorrow or Monday. If his body recovers well from this round of chemo, he'll start the next chemo treatment on 1/25. We are praising God that John has not been sick through this part of the treatment. | 1/5/07 | John is doing amazingly well through his chemo and had a great night last night and has done well all of today. He has not had any nausea or vomiting, which we understand is common. God is watching over our little boy and protecting him through this. His big brother James came up to the hospital to this morning to spend the day with John. He and John are enjoying playing a Game Cube together that the hospital provides. It is amazing all the things provided for the children to do while staying there. John has enjoyed getting all the emails from everyone during his stay. Thanks for being an encouragement to us. Click here for photos 
| 1/4/07 | John got started with his chemotherapy about 9 this morning and is doing well. His brothers George & James and his grandmother, Mamoo, spent the morning cheering him up and playing video games with him. The child-life workers here gave him this pet called "Chemo duck" that has a port for chemo like John has. John has enjoyed playing with his duck, changing the bandages and flushing out the ducks lines. Below is John's older brother, George, helping John with a difficult part of a video game. It's good to have an older brother that knows how to beat all the levels of the game.  
| 1/3/07 | It's 11:30p Wednesday night & John has not yet begun his chemotherapy treatment. They have been giving him fluids via IV since 9:30a this morning, but he does not have enough fluids passing through his body yet to allow him to begin the chemo. It is important that the fluids they give him via his IV are passing quickly through his system so the chemo drugs will go in, do their job, then quickly pass out via the urine. Once begun, he is to receive the chemo for 72 hours straight. We see God at work even here, his timing & ours are not the same. Every new procedure seems to test our faith & patience. Please continue to pray with us that the chemotherapy medicine will attack and destroy all the neuroblastoma cancer cells. We are also asking for a hedge of protection to be placed around John so his healthy cells and vital organs are not harmed by the chemotherapy. Heart problems, hearing loss and neutropenia are just a few possible side effects from the strong chemo John will be receiving. Thank you for your continued prayers for us. | 1/2/2007 | Tomorrow morning (Wednesday) we begin John's first chemotherapy treatment, which will last three to five days. We are expecting him to receive the first dosage around 6:00 pm Wednesday and ask that you would bathe John in prayer at that time. Would you please pray with us that the chemotherapy medicine will attack and destroy all the neuroblastoma cancer cells. We are also asking for a hedge of protection to be placed around John so his healthy cells and vital organs are not harmed by the chemotherapy. Please call us before visiting at the hospital (704-355-2000). It is very important that any visitors not be exposed to, or have, an infection. If you have a runny nose, cough, diarrhea or rash or have been near someone with one of these symptoms, it would be best to visit with John over the phone or send an email. Chickenpox is also very dangerous for John to be exposed to. Psalm 121
I will lift up my eyes to the hills—From whence comes my help?
My help comes from the LORD, Who made heaven and earth.
He will not allow your foot to be moved; He who keeps you will not slumber.
Behold, He who keeps Israel Shall neither slumber nor sleep. | 12/29/2006 | 
John with his home nurse Ms. Dawn Unfortunately, it was a typical day at the hospital, as not much went as planned. We arrived a little before 9 a.m. for Johns EKG and Echo test and both were done quickly and with no problems. Next we went to the Radiology department, where we were scheduled to begin anesthesia at 10 a.m. and then a series of test. The tests were to be three MRIs, CT Scan and lumbar puncture. At 10 a.m. a nurse came in and told us that they made a mistake on the papers and John was actually going to have a couple of bone biopsies and aspirations, not a lumbar puncture. We then sat and waited for two hours for the anesthesia team to send someone so John could "go to sleep" during his tests. Finally at noon, someone showed up and we were able to get started with the tests around 12:45. We were blessed by the anesthesia team and child-life workers who kept us informed of what was going on with John and where he was during each phase of the tests. Next Wednesday (1/3/2007) we are planning to go into the hospital and begin John's chemotherapy. We will probably be in the hospital for three to five days for his first treatment. Click here for photos | 12/28/2006 | Once again, Christmas has come and gone. This year we learned how precious life is, and that Jesus truly is the best gift of all. For with Him, we have the gift of eternal life. Each day is a blessing; as it should be for all of us. We are getting our lesson firsthand. John’s cancer has become a challenging journey for us. Yet, one thing remains the same; John’s humor. Even tonight as we shared the depth of John’s situation with the boys, John continued to be our family clown. How many families can discuss the seriousness of cancer and laugh in the midst of it? The boys accepted it well. The week before Christmas we went over to Oak Island Beach for several days to try and spend some time growing together as a family. We spent all but one day indoors, playing games, watching our favorite episodes of "Litlle House on the Prairie" and just visiting. as you'll see from the photos, the boys had a lot of fun one afternoon feeding the seagulls at the beach. It was a great time for our family. Earlier in the week, John complained about back pain. Our surgeon assures us this is a normal side affect and was pleased with John’s healing from the procedure. Tomorrow, he will have an MRI, CT scan, lumbar puncture, and an EKG done with him going under anesthesia for most of the procedures. | | 12/17/2006 | We had a family birthday party for John on Friday. Saturday our church family came to our home & gave him another wonderful birthday party. We rented a huge fire truck slide for the front yard and everyone slid from kids to adults, to the family dog! It was a special day and one that we will all remember for many months. John is feeling very good these days and is recovering well from his surgery two weeks ago. He is running around, jumping and playing like a normal six year old. At the end of the day, John told me that this was his best birthday ever! I've linked a number of photos and videos from the birthday party to our Picasa Web Album below: Click here to view the photos and videos Please pray for Dinki and I as we make decisions regarding John's treatment. We will soon choose whether to stay here in Charlotte and have John treated at CMC or to travel elsewhere for treatment. We have heard many great things about CMC and their childhood cancer program. We also know that there are other facilities around the nation that work with Neuroblastoma. We need wisdom to have John in whatever facility God wants him at for treatment. We have so enjoyed all the emails, phone calls and visits from so many of you. Since John's treatment will begin shortly after New Years, we are going to take a few days between now and then for a family vacation. We realize we need a break in order to strengthen our family and prepare for the battle that is in front of us. | 12/17/2006 | We had a family birthday party for John on Friday. Saturday our church family came to our home & gave him another wonderful birthday party. We rented a huge fire truck slide for the front yard and everyone slid from kids to adults, to the family dog! It was a special day and one that we will all remember for many months. John is feeling very good these days and is recovering well from his surgery two weeks ago. He is running around, jumping and playing like a normal six year old. At the end of the day, John told me that this was his best birthday ever! I've linked a number of photos and videos from the birthday party to our Picasa Web Album below: Click here to view the photos and videos Please pray for Dinki and I as we make decisions regarding John's treatment. We will soon choose whether to stay here in Charlotte and have John treated at CMC or to travel elsewhere for treatment. We have heard many great things about CMC and their childhood cancer program. We also know that there are other facilities around the nation that work with Neuroblastoma. We need wisdom to have John in whatever facility God wants him at for treatment. We have so enjoyed all the emails, phone calls and visits from so many of you. Since John's treatment will begin shortly after New Years, we are going to take a few days between now and then for a family vacation. We realize we need a break in order to strengthen our family and prepare for the battle that is in front of us. | 12/15/2006 | Today is John’s birthday and he is turning six years old. We will spend the day celebrating this special event in his life. Our church family made John a video of them all singing happy birthday to him, it was the most precious gift we could have received. Thank you all for the many prayers, cards, emails, gifts and food. We have never felt more loved and blessed than we do right now. We are looking forward to a wonderful Christmas, as we celebrate the birth of our Savior, Jesus. I will do one more update of the this website on Sunday evening, then I will take a break until after Christmas, as we need to focus all of our energies on our children Click here for photos from today The MIBG test done Tuesday allowed the doctors to see any other locations in the body that would contain neuroblastoma cells. All of the previous tests had shown John's neuroblastoma cancer to be localized to the area of the tumor. The MIBG scan showed that John had neuroblastoma cells in the bone marrow of several parts of his body as well as a lymph node in his abdomen. This was initially confusing to us, since they had done a bone marrow and lymph node biopsy and the results were that it had not spread. Today when they showed us the images from the MIBG test, we could see the neuroblastoma was located in only specific sections of the bone marrow. In order for the previous bone marrow biopsy to have shown the neuroblastoma cells, the biopsy would have to had been in the exact area where the cells had gathered. John’s neuroblastoma is being classified as a stage four cancer. For information on neuroblastoma and the stages (1 - 4), see the link below: Click here for link to Neuroblastoma site Without these test results, the doctors would have treated John for a lesser stage of cancer, which would have caused the cancer to reoccur a short time after the chemotherapy was stopped. Now that the doctors know he is at stage four, they will treat the cancer more aggressively and for a longer period of time. We have not gotten all of the details of the needed therapy, just taking in the information today has all but crushed our spirits. We decided that we will not have any more tests or doctor visits until the week after Christmas. We know that once we begin chemotherapy with John, we will have many long battles as we all fight for his life. God is in control of all things, however, it is a difficult reality to know that our son has this cancer. | 12/13/2006 | We just heard from the radiology department and they are not going to have to do the two additional scans today. They were able to get all the information they needed from the scan last night. We have a meeting with John's oncologist tomorrow morning to discuss the results of the MIBG and the other tests that have been run the last week. These tests will be used to determine the type of thereapy that John will receive. | 12/12/2006 | The MIBG test today was very difficult for John. He had two scans which required him to be very still for an hour and a half. The first thirty minute scan went very well and John had no problems. The second scan was extremely difficult because as you can see in the link to the photos below, John's entire body was strapped down to the machine and he could not move for an hour. His legs started hurting him half way through the scan and we could only try and massage portions of them to relieve the pain. We will find in the morning what the plan is for the Wednesday scan. If John has to be strapped down to the machine for an hour again, we are going to request that he be allowed to sleep under anesthesia during the scan. Click here for photos of John's MIBG scan We added a Needs page to the website today for listing things that would help us. Thank you for all you are doing to help our family through this difficult time. | 12/11/2006 | Tomorrow at 10:00 AM we go to CMC for the MIBG test. They will give John a solution to drink that will help protect his thyroid gland from the radiaoactive isotope, then about an hour later they will inject the isotope through an IV. We can then go home and come back for the scan at 4:00pm tomorrow evening. Wednesday and Thursday they will also scan John again, but will not have to give him any additional isotope. He will be awake during the procedure and can move around a little or watch a movie during the scan. The scan takes an hour and a half to complete each time, then we get to go back home, yeah! John had a good weekend and got outside this morning to drive his R/C truck. He is sleeping through the night, feeling good and is very mobile. The pain from his surgery is mostly gone, so he is running and playing as usual. A nurse came by today to show us how to flush John's Central line or Hickman. This central line is installed in a large vein John's chest that leads directly to the heart. They can then give him medication, draw blood, etc. without having to prick him again. Because the line can get infected, or clogged, it must be maintained and cleaned regularly several times a week. We have been so busy and tired that we didn't even have time to get a Christmas tree yet. Some friends dropped by tonight while James and John were asleep and brought us a beautiful tree. We can't wait to see their faces in the morning. We have been receiving meals every couple of days from many of our friends. Thank you all for your generosity! We are so blessed to have so many people caring for us. Click here for photos | | 12/9/2006 | John came home today around noon time. He's feeling well and very happy to be back at home. next Tuesday is our big day with the MIBG test. He will go in Tuesday morning to receive the radioisotope and then late Tuesday they will scan him for further signs of the tumor spreading. They will then repeat the scan again Wednesday, and possibly even Thursday to ensure they have found all traces of the tumor. | 12/8/2006 | John got out of the bed and walked quite a long distance today to the game room. He played pinball, foosball and xBox 360. It was a good day. Since he's still having some pain from his incision, we are going to be here another night and plan to go home tomorrow (Saturday). John had some special friends drop by and visit him from the Washington, DC area today. | 12/7/2006 | Praise God, we had an awesome day with John. He had his first meal in four and a half days today and got to pick anything he wanted. He chose his favorite: chicken strips & french fries from Chic-Fil-A. He also go up and walked to the door and back, which was a difficult journey for him. We are so encouraged by all the friends and family members that have been calling, visiting and sending little things to perk up John. Today he drove his remote control monster truck out the room and down the hall. It was a really great day. The link below contains a number of pictures from the last two days: Click here for photos Tomorrow we will talk to all three boys about John's cancer and what we can expect over the coming weeks. The child-life group here at the hospital has been great in explaining things and we are confident that they will be able to help the boys understand the needs and changes we will go through as a family. | 12/6/2006
| Today John was able to sit in a chair for a few minutes and also stand up for a moment. This is a huge improvement from yesterday. While he hasn't had regular food yet, he did eat three popscicles and his body is recovering well. He is still in a good deal of pain at times from the incision on his abdomen, but he is a real trooper and rarely complains. His brother's George and James have been up every day to visit John and have been very compassionate to him. James has shared that he would gladly give his life for his brother or take the sickness from John and put it in him. This is a special time for our family! This morning the Child Life group that helps support families at the hospital came by to visit John. They brought him over fifty emails that had been sent through the hospitals website listed above. They blessed us by telling us that John had received many more emails than any child that had ever been at this hospital. Thank you so much for encouraging us and John. The doctors today confirmed that John does have Neuroblastoma, a type of cancer occurring in only about 550 people a year, or 8 kids out of every million. John will have a very important test on Tuesday called a MIBG. Details about the MIBG test can be explored using the link below: http://www.nlm.nih.gov/medlineplus/ency/article/003830.htm This is a radioactive test that has a small potential to permanently damage John's thyroid gland. John will be given an iodine solution to block uptake of the radioisotope into the thyroid. We are asking for you to pray for us two things: 1) That John's body, and specifically his thyroid gland, will be completely protected from damage by the radioisotope. 2) That the test would accurately reveal any other portions of John's body that contain Neuroblastoma. Dinki and I are tag teaming nights with John and holding up well. I stayed with John last night and Dinki will stay with him tonight. This page was last modified on December 08, 2006 08:25 PM |
| | 12/5/2006 | John is perking up and feeling better. He had a popscicle tonight and is asking to eat. | | Post Surgery | John is resting beautifully now and still has just awoken from his surgery. The surgeon was unable to remove the tumor, but was able to determine that it was a neuroblastoma. That is good for John, because now they know what they are working with and how they can treat it. John will require chemotherapy or radiation in order to shrink the tumor so that it can be surgically removed at a later time. They took sample tissue from his liver and a lymph node next to the tumor and the cancer had not spread it any of those areas. We have a long road ahead of us but are confident that we can journey down this road one day at a time, one minute at a time. John had over a dozen gracious friends and family members waiting and praying during the surgery. It was there prayers and yours that will continue to carry Dinki, George, James, John and myself through this time. The Lord Jesus had comforted us every step and every minute and we have never felt alone through anything. We are so blessed to have our faith in Him and not in doctors or other men and women.
| 12/3/2006 | We are all packed up and ready to head over to the hospital this morning. John had a great weekend playing and attending a friend's birthday party. Lois has been so great at helping us think through all the details of surgery and prepare for our extended stay at the hospital. My mom and dad arrived this morning from Louisiana to watch George and James while Dinki and I are at the hospital with John. |
Events Before Surgery # 1 12/1/2006
|  John wanted to share a special note with all of you:
Thank you for praying for me, Love John. | | 11/30/2006 | John took the news about his operation like a real trooper. He's glad to be moving towards getting better. Our dear friend Lois arrived from Ohio and will be helping us prepare for the trip to the hospital. | 11/29/2006 | We are still feeling overwhelmed after talking this morning to John's surgeon. He is a wonderful doctor and we feel very good about him operating on John, but it is still so much to take in. He will go in this Sunday (12/3) morning at 10:00am to CMC for them to prepare John for surgery which will happen Monday morning at 7:00am. The surgical plan is to go in and try and remove the entire tumor, but the surgeon will not know exactly how to proceed until he examines the tumor inside of John. At best he will be able to remove everything and John will go on to lead a perfectly normal life. At worse, he may look at the tumor and realize it cannot be immediately removed and some other steps may need to be performed. John will have to stay at the hospital for about a week to recover from this surgery before returning home. I think for me as a parent, the hardest part will be holding his hand later today and telling him what he must endure over the next several weeks. The words that I need to share with John seem unspeakable, but I know I will be given the grace to speak them to him. He is a strong and otherwise healthy boy and I know he will recover quickly from this. Please lift up Dinki in prayer during the coming days before surgery, as right now, this is hardest on her. With love, the Sumralls Psalm 56:3 Whenever I am afraid, I will trust in You. | 11/27/2006 | We received some wonderful news today from the doctor: John's bone marrow test results showed that it was normal. We don't understand the full implications yet of these results, but we know that it is a good thing. Phillipians 4:4 Rejoice in the Lord always. Again I will say, rejoice! | 11/24/2006 | Yesterday we had a wonderful Thanksgiving meal with some dear friends. We are thankful that we live in a modern age where medicine has advanced to the point that there is great hope for John's illness. We know that just twenty or thirty years ago, things were much different in the medical field. While we aren't putting our faith in the doctors, we are grateful for the skills and abilities he has given them. Dinki, Rick James and John are all suffering from either cold or sinus issues. John had a slight fever tonight when he went to bed. We ask for your prayers that we all get healthy so we have the strength to continue this fight. | 11/22/2006 | We just got back from spending five hours at the hospital where a biopsy was done of John's bone marrow. A dear friend stayed with us during the procedure and encouraged us with prayer and scriptures. It's so good to have some steady hands to prop Dinki and me up right now. We held John as he drifted off to sleep under the anesthesia. It was troubling for both of us to walk out as we left him in the hands of the doctors and nurses. The doctor was able to get the biopsy completed with no complications and we should get the results early next week. There was a wonderful nurse there that prayed for us before we went home. She was a great encouragement to Dinki and me and shared several success stories of other patients who have fought tumors. We are encouraged to have these battery of tests completed. The bone scan results came in today and everything looked mostly good. There were a couple of questionable spots near his spine that were a little hazy. The doctor said that he could not even see the spots, but the radiologist told him about them. Next Wednesday we have an appointment with a well regarded pediatric surgeon to discuss treatment options. Tomorrow we’ll try to just relax and enjoy Thanksgiving together as a family. Forgot to share that yesterday John told us what he wanted for his upcoming birthday: To not have to see anymore doctors. No toys, just to be made well. | 11/21/2006 | John had a bone scan this morning and did fabulous. Fortunately it was painless, except for installing the IV for an injection used to enhance the images during the scan. They did one bone scan that lasted fifteen minutes and another scan that lasted twenty-five minutes. He held very still the whole time the scans were being done. His mom and I are so proud of his endurance. He's really tired of getting pricked again and again. Just one more prick tomorrow for his bone marrow study, and he should have about a week break before any more tests. We appreciate all of the encouraging emails, cards and phone calls. Having so many great friends and family members supporting us makes this process almost bearable. Thank you so much to all of you who have committed to pray regularly for John. Psalm 6:2 Have mercy on me, O Lord, for I am weak;
O Lord, heal me, for my bones are troubled. | 11/20/2006 | This morning, we spent two hours with a tumor specialist at Charlotte's Medical Center. We discussed the tumor they found last week in John. We are asking for prayer for our next steps in this process. Tomorrow morning at 7:30 am, John will have a bone scan. Wednesday morning at 10:30 am, John will have a bone marrow biopsy. These procedures are being performed to determine if it has spread to other parts of his body and the particular type of cells involved. The scan and the biopsy will move us toward a better understanding of the nature of his tumor. On Wednesday, November 29, we will meet with a Pediatric Surgeon to discuss the test results and surgery options. We cannot begin to tell each of you how much we appreciate your prayers on our behalf. | 11/16/2006 | CT Scan results are in and confirm a growth. We are referred to a kidney specialist. The meeting is today. The kidney specialist says he thinks it may be a pheochromacytoma and orders a blood test and 24-hour urine collection to confirm this diagnosis. They told us the tumor is several inches in size and that we need to see another specialists, a pediatric oncologists that deals with tumors in children. We had no idea that the tumor was so large, we are very emotional. We know that our Lord & Savior Jesus Christ is at work in all things. We wonder what is going on with John and how God is working though this. His ways are not our ways. | | 11/15/2006 | CT Scan of chest and abdomen was done. We are awaiting the results. | | 11/13/2006 | Ultrasound of abdomen found an usual growth on top of his right adrenal gland near his kidney. This is the first time someone has confirmed what we have been saying for several months, that it's his right side that has the pain, not his stomach. | | 11/09/2006 | John has one of the worst spells yet with his pain and is literally clawing at the bed sheets in pain. The pain lasts for close to two hours, then subsides, and he is able to sleep through the night. | | 11/04/2006 | Another series of vomiting with John, this time it lasts about 36 hours. We called the digestive specialist and they tell us to just double up the medicine, or if "we want to", we can have a liver ultrasound. We opt for the ultrasound, as the medicine seems to be making things worse. | 10/20/2006 | Endoscope of John's stomach performed. Stomach and esophagus were found to be swollen and irritated. John was prescribed acid reducer for his stomach and given a list of foods to avoid to keep from irritating the stomach further. | | 10/12/2006 | First appointment with a pediatric gastroenterologist. He thinks this is a common, mechanical issue with John's stomach and orders an edoscopic procedure. | | 09/11/2006 | Upper GI scan was done and nothing abnormal was found in the stomach. | | 09/06/2006 | Switched pediatricians, as we had no faith in the previous pediatrician since they did no medical tests to determine if his blood sugar was normal or not. | | 09/04/2006 | Borrowed a blood sugar testing kit from a friend, as John is still having vomiting and complaining of his right side hurting. His blood sugar was tested periodically and was always normal. | 07/24/2006 | We took John to the pediatrician, as he seems to have these stomach problems every four or five weeks, but no other symptoms. The doctor said he's probably got low blood sugar and we need to ensure he has snacks periodically. The snacks between meals doesn't seem to be making a difference. | March 2006 | John has first spell with vomiting for no apparent reason and then 24 hours later he seems fine. This went on randomly for several months and there was no pattern to anything he was experiencing. |
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