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June 2007 | 6/28/07 | The boys and I had a great time thursday afternoon spending the evening in a park in downtown Charlotte. It was so good to see them all laughing and playing as if cancer had never entered our family. We ended the day with a Welch's Soda toast to each of them growing up to be servants of the most High God. Click on the window below to b taken to the full slide show of photos. | 6/26/07 | Six months ago today, we were celebrating the birth of our Lord and Savior, Jesus Christ, along with facing the diagnosis of John's cancer. We did not know what was ahead of us. Yet, we knew the truth in God's Word. I can do all things through Christ who strengthens me. Philippians 4:13 [NKJV] This has made us fall on our faces before God to stand firm in our uncertain circumstances. We, also, know God is BIG ENOUGH. He has truly given us the greatest gift of all: His Son. And we would like to take this opportunity to celebrate another gift He has given our family: John's treatment success. The doctors are telling us that they see no evidence of disease (*N.E.D.) in John's body. May God receive all of the glory for sustaining us and carrying us through this difficult journey. John has been said to be remarkable. John is because God is! He lives inside this precious little boy. It is a testament to God's remarkable work in these earthly vessels we call bodies.
We are enjoying our time at home immensely. John is back in public and in church. I wish all of you could have seen the look on his face when he was told he could attend his class for the first time in over six months. He was more than delighted. He, also, has a list of families he wants to see. And he wants to see them at their homes. So, don't be surprised if we show up on your doorstep. He is free. Yes, from an immunosuppressed system, but more importantly, free in Christ Jesus. If you don't know Him, please know Him. He will set you free. "Therefore if the Son makes you free, you shall be free indeed." John 8:36 [NKJV] With John's first 3F8/antibody, we had many unknowns. Now, we know what to prepare for and expect in the following treatments. The staff at Sloan-Kettering is incredible in their expertise as well as their bed-side manner. They truly have a heart for these kids. It is amazing how much they embrace the child and family as they walk through each phase with you. I am not saying the rest will be easy, but just as we knew what to expect with the chemotherapy, we have a better handle on this next phase of treatment.
There has been talk of John having his port removed after his second 3F8/antibody treatment. This would be a two week healing process. After which time, John could swim for the rest of the summer and take baths in deeper water. We are looking forward to these "normal" activities. After all, what is "normal"? I have often said, "Normal is only a setting on a washing machine." We will adjust to our new kind of normal with cancer. And it will be glorious even as we watch John's hair grow back. God is good!!!
Thank you for continuing to pray for us and with us. We still need you in our new phase.
So much love, Dinki
*N.E.D. or No Evidence of Disease refers to the inability of the doctors to detect any Neuroblastoma disease in John's body. It does not mean that John is in remission or that he is cured. The doctors know from their experience with treating neuroblastoma for the past twenty years, that there are still microscopic cancer cells that must be irradicated. While we continue to pray in faith that John is fully cured, we continue to live with the possibility that the disease could reoccur at any time.
| 6/18/07 | John is glad to be home and enjoying spending time with his brothers and friends. He is not having any problems except at night. He wakes up at times during the night and has to change his clothes becuase he has sweat so much. This just seems to be a side effect of all the treatments I've gotten emails from a number of folks that they have been unable to logon to the website. I've made some adjustments to try and fix this problem. This issue continues to happen despite our best efforts to prevent it. If you get locked out, just try pressing the refresh button, usually function key <F5>, a few times as we have no control over the web servers that host our pages.. | | 6/15/07 | Hallelujah, we are home in Charlotte and John is doing great. We don't have all the final test results in, but it appears that John is showing no evidence of desease (NED). This is what we have been praying for. We'll be posting aditional details soon, but that's the news for now! | | 6/13/07 | John made it through his third treatment today. It was tough, but it is getting smoother with each treatment. He is being so strong and doing so well with the pain involved in the treatment. Dinki and I have been so proud of him! The staff here continues to amaze us with the care and kindness they provide to John. He's over the halfway point for this tretment, with just two 3F8 treatments left. | 6/12/07 | John and I (Dinki) enjoyed a pleasant weekend in NY. There was a Street Fair on First Avenue on Saturday with a lot of cool vendors. It was a nice change of scenery. John spent some of his money on a remote control car that does some fancy tricks. It is a pretty cool car. Later that evening was a graduation party in the basement for one of the children at the Ronald McDonald House. It was lovely. Several men tried to get John to dance. He refused. He was more interested in the food. Sunday was truly a day of rest after the chaotic events of last week. Rick arrived late Sunday evening.
 Monday morning, we got an early start at the hospital. First, they do a CBC (complete blood count) to determine specific levels. Then, we headed to the bed area to begin John's antibody (aka 3F8) treatment. The nurses were very pleased with his first dose. He really did very well. John's primary nurse, Danielle, said, "He is so strong." Gee! Where have we heard that before? He is a trooper. Most of the day was spent at the hospital.
Today was a little better knowing what to expect and helping John through it. The nurses were, once again, very pleased with his progress. We spent a good part of the day at the hospital. John slept most of the afternoon. It's looking li ke a late night. We start up again early in the morning. John will be admitted to another floor of the hospital late tomorrow for the remaining two days of 3F8. This is because of the isolation from the other immuno-suppressed children.
We are planning on going home this weekend. It will depend on a flight with Corporate Angel. Please pray we can get home soon. We will be home for three weeks before returning for his second 3F8 treatment. At which time, we will also have his radiation done. It will be at least two and a half weeks in NY. It's all worth it, though.
Just this evening, we were discussing how wonderful it will be to go home without another chemo hanging over our heads and not having such a suppressed immune system. We spoke to John about the potential of not doing any more chemo for a while. Mr. Positive himself, said, "At least if I get it back, we know all what to do." His positive spirit and outlook is remarkable. Even today as we were preparing for his 3F8 treatment, he was coaching us on what to expect during his half hour treatment. We serve an amazing God. 2 Corinthians 12:9a And He said to me, "My grace is sufficient for you; for My strength is made perfect in weakness." . . . (NKJV) Oh, how we love Him!
| 6/7/07 10:20 AM | We are sorry for the delay in updating. What was supposed to be a simple week of testing in NY has become a chaotic marathon of sorts. First, they added an Echocardiogram and a urine collection. Then, they wanted additional blood cultures drawn to make sure the antibiotic John had been on really took care of it. We should know those results today.
Monday afternoon was a meeting with one of the nurse practitioners to go over preparation for the week’s tests and examine John. Woo Hoo! John has gained over three pounds. He is bouncing back well. Tuesday was dropping off the urine collection, having CT scans, and meeting with one of the doctors to go over John’s next phase of treatment; antibodies. Papers were signed. We were put on the list to begin the week of June 18.
Wednesday, we were in for a CBC (complete blood count), blood cultures, MIBG injection, and Echocardiogram. Then, life cranked up a notch. Shortly after lunch, we were called in to meet with one of the nurse practitioners for some disturbing news. On Tuesday, a child in the playroom exposed the children to the Shingles (Chicken Pox virus). Ugh! What does this mean? John was quickly scheduled to receive a four-hour infusion of a high-powered antibiotic to help prevent the Shingles which was followed by a discussion of isolation and how this would alter his antibody treatment on the 18th. The Neuroblastoma Team was meeting that afternoon to discuss a plan.
We continued on to our MIBG injection and Echo. After which, we were called back in to meet with another nurse practitioner. The Team had decided to move John’s treatment up a notch; to the 11th. Yea, this Monday. Overdrive doesn’t seem to cover it. This meant John had to start a shot a day for five days prior to antibodies. We pulled it off. He got his first shot Wednesday evening right after our meeting. The only thing pending was his MIBG scan. They felt pretty sure this would not hinder moving forward, but it was a possibility.
Yesterday, John had his scan very early and headed straight to his bone marrows. Then, he was hooked up for his four-hour infusion. After that, we got the thumbs up. The MIBG scan was good. We are heading into antibody treatment this Monday, June 11. We have been scrambling ever since Wednesday evening. Arrangements need to be made for George and James as well as getting Rick to NY for Monday. John needs his daddy for this phase of treatment. It can be taxing on a little’s ones emotions the first go ‘round. So, you all know how a little boy would need his daddy.
Please pray for a smooth transition, care for George and James, travel for Rick, antibody treatment to go well, overall health of the oncology children (many families at the Ronald McDonald House will to go into isolation), and opportunities to be a witness to His peace in the midst of these circumstances. May our Light so shine forth that there would be no doubt where our Power Source truly comes from. Thanking all of you in advance for praying for and loving us through this challenging time.
Love, Dinki | | Latest Photos | Click here for pictures from our birthday party for Rick & James as well as photos of John's last Chemo treatment. | 6/3/07 | John and Dinki made it safely to New York and got settled in to the Ronald McDonald house. John has his first appointment at MSKCC tomorrow afternoon. Tuesday at 8:30 am he will have a CT scan, then on Wednesday he will a bone marrow and asperate extraction taken while under anesthesia. He will then get the MIBG isotope in preparation for his Thursday morning MIBG scan. They are hopeing to fly back home Thursday evening or early Friday. Please pray for there safety while at the hospital and Ronald House. Please pray that John's thyroid gland will not be damaged by the MIBG test. Please pray for James, John and myself as we are left in Charlotte and greatly missing them.
| 6/2/07
| Home Health came out Thursday evening to show Dinki how to administer John’s antibiotics. It was a little challenging in the beginning, but we’ve got a system  going now. Friday, the home health nurse returned for a CBC (complete blood count). This revealed low platelets. John returned to the hospital Saturday morning to receive those. We almost have an auto-pilot to CMC (Carolinas Medical Center) and a regular bed. John did well, and we were home quicker than we anticipated. The nurse we had is one of our favorites. She expedited the whole procedure. We are blessed to have such great nurses and have come to know most of them personally. They are a great bunch! Saturday afternoon was spent with some family time and packing orders. John and Dinki leave Sunday afternoon for NY. James and I got to spend most of the day together Saturday and had a wonderfult time as you'll see in the photos listed below. We played thirty-six holes prayof miniature gold and managed to find fifty gold balls.
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