7/29/07

We all made it back safely from New York to Charlotte.  George, James and I came in Thursday evening and Dinki & John flew in Friday with Corporate Angel.  They had over a five hour delay flying out of New York, as a bad storm was coming up the east coast and had all air traffic there stopped.

John is doing very well and cannot wait to go swimming, as he had his external lines removed last week.  It is healing nicely and he will be able to swim in another week and a half! 

This trip home will only be for a week, as john has to go back to NY next week for another WEEK of 3F8 antibody.  After that he will be home for three weeks before having to go back.  We'll continue the trips to NY for the next couple of years, eventually moving to eight weeks between the 3F8 cycles, which will allow us to be home a couple of months at a time. 

The doctors are very pleased with John's progress and he is going at a 110% these days, running, playinf and cracking jokes.  George and John are also happy to be home, as two weeks for them in New York was a long time away.  This will be my first full-time week working at my office since John got sick last year.  Please pray for me as I share the wonderful miracles that God has performed over the last eight months.

 7/23/2007

It was a rainy day in NY. Getting back and forth to Sloan-Kettering was a little more challenging. All three boys have risen to the occasion, though. They have been outstanding the entire trip. They are such good boys! I guess I shouldn't say that about George. He's becoming such a great, young man. It is hard for me to grasp what little time we have left with him at home. Yet, there are no guarantees as to how much 'time' we have with any of our children. Each day is a gift. Oh, we've heard it before and read about it countless times in those forwarded e-mails. Seriously, each day is a gift. One of my dear friends recently gave me a shirt stating just that. I pray you will know what it looks like for you and your loved ones.

Last Tuesday, John was a real trooper, once again. He had his bone marrow tests and his line/port removed. He's so cute about it. The first time he went to the restroom, he proceeded to "move his lines" out of the way. Oh yea, he didn't have to. They're gone! I wish you could have seen the look on his face. It was delightful! Now, we don't have to change the dressing, flush the lines, or even change the caps. More importantly, we don't have to watch his fevers so intently. Yeah! Freedom has taken on a whole new meaning.

Radiation, as most of you already know from reading the web site, has been extended three more days. As Dr. Kushner said, "I would rather be safe than sorry." Hey, we're good on safety especially where Neuroblastoma is concerned. No arguments here. The techs at radiation are fabulous with these kids. One tech, Mr. Kerry, has become John's favorite. The first time we met him, during set up, he pegged John. He asked him to get up on the table, extend his right hand above the table, press a button with his left hand, and pretend he was Yoda using the force to raise the table. John was grinning from ear to ear. His Yoda force is working well. Now, every time Mr. Kerry is there, John pretends he is Yoda raising the table to get ready for radiation. Once he is in position, they do a little tweaking of his body to align him with the lasers and his tattoos. Yes, John has five tattoos. They are black, inked dots (no bigger than a pinhead) to help the techs line him up with the lasers in order to radiate the "exact" area. He has five altogether; three on his abdomen about three inches apart and one on each side. After alignment, everyone exits the room and the 18 inch door shuts. The only means of communication is via an intercom system. Oh yea, and we can see him on a monitor. Treatment lasts about four minutes. John does well to stay completely still. The big door slides open, and we race in to our little boy (aka Yoda). This is done twice a day with at least six hours in between. We are so proud of him.

John and I are trying to get a Corporate Angel flight back to Charlotte over the weekend. Then, we turn around and fly back for another (3rd) 3F8 treatment on August 6th. 3F8 is given over five days; outpatient. So, this should be our last long stay (3 weeks) in NY because radiation is only given one time. Granted, anything can happen. As another Neuroblastoma mom, Sarah Skees, put it, "In the world of Neuroblastoma, there are no guarantees. We have recently heard of some sad stories of violent relapses in children who have done everything that was recommended in the world of allopathic medicine. And there are some wonderful success stories. There are just no guarantees."

None of us know the future, and none of us live the same lives. In which case, I pray we will not judge what life looks like for each other. I have been meditating on Matthew 7:2 For with what judgment you judge, you will be judged; and with the measure you use, it will be measured back to you. [NKJV] There was a day I judged Homeschoolers very harshly. Now, I am one. I truly pray each of us can live according to the conviction God alone is giving us and not the so-called conviction of well-meaning people. We should be careful when we open our mouths about the journey God has our fellow brothers and sisters in Christ on. One day, we could find ourselves in the same place. May we be slow to speak and quick to listen.

Last week, John looked at me and asked, "What is the easiest thing in the world to do?" Eight months ago, my answer would have been incredibly different. Now that we are in the land of cancer, my whole perspective on life has changed. What I once thought was easy, is really difficult for many of these kids battling this nasty disease. I confess. It took me a long time to answer. What is easy? I replied, "John, Mommy is sorry, but I am having trouble thinking about this." Once again, I had to choke back the tears when he looked up at me with the biggest smile on his face and said, "Mommy, the easiest thing in the world to do is hug God because you don't have to be afraid." And he's right!

Love,

Dinki 

7/20/07

The boys went to a Major League Baseball game yesterday as guests of the New York Yankees and Memorial Sloan Kettering Cancer Center (MSKCC).  It was a once in a lifetime experience as they were able to walk on the Yankees field, meet players, sit in their dugout, go back to the locker room area , as well as get autographs and photo ops.  They were treated to amazing seats at ground zero behind home plate.  Everyone was so generous and helpful to John and the boys and made them feel very special.  Thank you Yankees and MSKCC for your generosity to our family! 

We learned some interesting trivia there regarding the Yankee's patriotic insignia.  It was first designed in 1877 as a medal of honor by Tiffany & Company for the first New York City police offer shot in the line of duty.  The Yankees adopted it and it became part of the uniform in 1909.

The game was exciting as the Yankees led 2-0 over the Toronto Blue Jays most of the game.  In the seventh inning the Blue Jays scored three runs and held that lead until the end of the game, ending the Yankees five game winning streak.

A gentleman unassociated with the Yankees walked over to John and I during the game and handed John a baseball that had been signed by the entire Yankees team.  The man's father was also been a cancer patient at MSKCC and shared what a wonderful facility MSKCC is.  We are constantly encouraged by the kindness and generosity of so many people we regularly meet that help and support John and our family.

Thank you all for your continued prayers and encouragement.  John is having no ill effects with the radiation treatments and is enjoying various activities in New York and the Ronald McDonald house.  They have added an additonal three days of radiation treatment for John, which means he will not be finished with until next Friday afternoon (7/27).  George, James and I will fly out Thursday afternoon to Charlotte, as we had already purchased our return tickets before we knew that John would have an extra three days of radiation.

7/16/2007

John completed his 3F8 antibody treatment last week without any problems.  Sunday the boys and I went to the beach with my cousin Christine and her husband Carlos and their kids, who live in Brooklyn.  We spent the day digging holes and playing in the sand and surf.  The beach is right down the boardwalk from Coney Island, one of the oldest amusement parks in the US.  The boys took turns burying each other in the sand and digging a giant hole in the sand.  It was so deep some of the kids could disappear into the hole. 

We began radiation this morning and it went well with no problems.  The whole radiation treatment takes five minutes to get John in the right position and about one minute for the actual radiation process.  Today after radiation John felt fine and we spent the afternoon at Central park and at the zoo.  The boys had a great time climbing on the rocks in the park and seeing all the animals.  John has a treatment this afternoon and then he is done for the day.  He will get two radiation treatments every day for this week until Friday, then will have Saturday and Sunday off.  On Monday and Tuesday (7/23-24) he gets what we pray will be his last two days of radiation treatment.  Tomorrow morning (Tuesday)  around 10:20 AM he will get his Hickman line removed under general anestetia. 

• Please pray that his radiation treatment is effective and does not cuase any long term health problems for him. 

• Please pray that the surgery for removing his Hickman line proceeds without any problems.

John and Dinki flew out this morning to New York for John's next series of treatments.  They were both smiling and laughing and in good spirits and have the weekend together to relax and enjoy themselves.  Monday will begins five days of 3F8 antibody treatment.  The following week he will have five days of radiation and hopefully have his external central line removed so that he might be able to go swimming in a few weeks.  The third week he will have two more days of radiation and head home a day or two after (7/25 or 7/26) the radiation is completed. 

Then he will be home in Charlotte for about a week and a half, then we'll have to return back to NY for another week of 3F8 antibody treatment.