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Posted by: Daddy	1/1/2012 6:53 AM
December 6, St. Nicholas Day 2011, marked the 5-year anniversary of JT’s bone marrow transplant. It is incredible that he’s come so far, that he’s alive and doing so well. Thank you for all of the prayers that helped and strengthened him and carried our family along the way. I’ll get back to the anniversary, but first let me fill in some gaps. Since my last update in mid-October, things have been moving right along here at the Brown house. I’ve never seen such a celebration of Halloween as I witnessed this year – it was a weeklong cornucopia of candy and costumes. There was a Cub Scout party, parade and hayride; there was a Halloween family gathering at Camp Lutherlyn; there was trick-or-treating in Olde Town Grove City; and there was trick-or-treating in our neighborhood. We carved pumpkins. It seemed to never end. JT was a ninja, and Jodi pulled out all the stops and sewed an award-winning (literally, at the Cub Scout party) handmade Angry Bird costume for Justy. Aunt Rebecca flew home to be part of the week, and she capped it all off with a trip for us all to see Phineas and Ferb live in Youngstown. Meanwhile, the boys have been swimming in practices and meets, attending Sunday School and Youth Club at East Main church, and waving their Terrible Towels at the TV on Sundays. We received good reports at their parent conferences at school, and they continue to be curious about everything. Thanksgiving was good family time – we traveled to Cleveland to celebrate with Jodi’s brother and his family. I was able to take JT to Cincinnati over the Thanksgiving weekend, and we had a wonderful time together. It may seem strange but this was the highlight of the Thanksgiving holiday for me. We played competitive UNO at the hospital and had a good time reading books, playing Miss Pac-Man, and creating a gingerbread house at the Cincinnati Ronald McDonald House. I can’t say enough how much we’ve been blessed by the kindness of the Ronald McDonald House. We geared up for a marathon St. Nicholas Day celebration by catching a Treebeard Brown show at the local coffee shop the weekend before. On the 5th, JT took a buddy down to Fun Fore All for video game night. On the 6th, we celebrated the big day as a family. On the 7th, we gathered with friends to go caroling at a local nursing home and then returned for a party back at our house. Many of the teachers who supported us during the transplant year were able to come, and many of them remarked on how far JT has come. The boys were in a Christmas play at the church on Dec. 11, and from there the holidays took off. At different times, we hosted our small group, Jodi’s family, and my family for Christmas this year. As I write this on New Year’s Day, it seems hard to believe that the season is over. We’re looking forward to good things in 2012. Medically speaking, there have been some interesting developments. First, Jodi took JT for his feeding evaluation in December. We had hoped that perhaps an inpatient stay over the summer might “fix” JT’s eating troubles, but we were told that’s unlikely. In fact, they did not recommend that course of action. Instead, they told us to expect a long process over several years. JT has shown a little more interest in food since then, and I’ve heard him add “Please help me eat again” to his bedtime prayers. So I think we’ll start feeding therapy in Pittsburgh in the spring and settle in for a slow and steady race. JT had a comprehensive immune study workup the last time he was in Cincinnati, and we hope for encouraging results when he returns on January 6. If the picture looks good, they’re talking about initiating immunizations, which would be huge for him. Also, there is talk of moving his treatments to a once-a-month schedule. We have mixed feelings about this but we’re interested in what the doctors have to say in light of the recent study results. Please pray for good news and wisdom. Finally, please pray for the family of Ted Nicopolis, who passed away last week. Mr. Nicopolis was a good friend of ours, and his medical journey started at the same time as JT’s; in many ways, they walked the long hospital road together. When we say JT’s prayers at night, we ask them in the name of Christ: our King, our Healer, and our Great Hope, and we trust that Ted is in the arms of the Great Physician now. I tell JT all the time that one day with Jesus he’ll get a new body with no more hurts or tubes or medicines or ports or needles. Thank God for that hope, for all of us. I believe that when JT gets his new body, Ted will be there with a big hug for him. Please pray for his family. I hope that 2012 is a year of grace and light for all of you. Thank you for continuing to check up on us.

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