The cure4treebeard Blog

St. Nicholas Day: 5-year Anniversary!

cure4treebeard@gmail.com — Sun, 01 Jan 2012 12:53:00 GMT

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.

September/ early October 2011

cure4treebeard@gmail.com — Tue, 18 Oct 2011 02:09:00 GMT

Fall in western PA is simply outstanding: a break from the heat, spectacular leaves, Steelers football, and apples at Emmet’s Orchard – what’s not to love?

It’s been a good season for us. The boys both signed up for swim team again and they’re practicing hard. In fact, at the end of September JT received the “Sportsmanship Award: for Outstanding Achievement in Swimming,” and let me tell you – he was stoked. They’re working with him on the butterfly stroke now so he seems to be growing into the sport. Both boys enjoy swim practice and it’s a great way for them to burn the post-school energy out. As one of the other parents said to me, “It takes the edge off.” Their first meet of the season is this Saturday (Oct. 22) so we’re already gearing up for a little competition. They’re both having a lot of fun with it at this point, and that’s the main thing. JT’s doctor says that swimming is about the best thing she can imagine for him to do to keep his range of motion, so it’s a win all the way around.

We’re watching the Steelers again, and of course we’re a bit discouraged like everyone else. Of course, it could be a lot worse: we could be Browns fans!

Jodi is enjoying some more free time since both boys are in school all day this year. She’s been selling a few things on eBay and she’s also in an intensive nutrition/fitness class at the YMCA.

Other big news: both boys are now officially Cub Scouts. We decided to go with scouting instead of piano lessons this year. JT is a Wolf and Justy is a Tiger. Our local pack is very active, so there will be a lot of opportunities for them to get out and about with other kids their age. They’re both ready to skip the Scouting Motto and get right into firebuilding, BB guns, and pocket knives, but I keep telling them they have to give it a little bit of time.

Jodi and JT have been heading to Cincinnati on Thursday night for Friday/Saturday treatments, and the new schedule seems to be working out. On the first weekend they went, Justy and I headed up the road to Grove City College for the parade and Homecoming festivities. Justy had fun; I felt old.

Our big Fall adventure was to an overnight trip to the PA Grand Canyon up in Wellsboro. It was a last-minute venture, and it turned out to be a home run. We found a swimming hole with some places to jump from rock ledges into deep water, and we also found a cool natural rock waterslide for the boys. The Fall leaves were at their peak and we worked in a waterfall hike on the Turkeyfoot path, a geocache, and a ride on the Pine Creek Railtrail bike path. We spent the night in a very rustic cabin, cooked s’mores over a campfire, ordered a frog leg at an ice cream stand (long story) and had a lot of fun being together outside.

At the hospital, things continue to proceed without many changes. JT continues to be off the IV steroids but still gets the oral daily dose. So far, his IGG levels have remained high enough that he’s been able to skip the home infusions, which is a real blessing. Every three weeks is a very doable Cincinnati schedule, and the photopheresis treatments continue to do their good work helping his skin stay soft and supple.

Lastly, there’s been no significant movement on the eating front. JT will eat part of a hot dog after school each day, but that’s about it. Jodi re-initiated contact with the feeding group at the Children's Intitute in Pittsburgh today, and I think we may try to be a little more proactive about this issue as we move into Spring and next Summer.

Thank you so much for checking in with us. I smile when I see from the counter that folks are still remembering JT and thinking about him as his journey continues. We are grateful for your continued prayers.

July/August 2011

cure4treebeard@gmail.com — Tue, 06 Sep 2011 22:33:00 GMT

It sounded a lot like the soundtrack from Finding Nemo around here this morning, with cries of “First day of school! First day of school!” coming from both boys. Seeing them all dressed and ready to go made me wonder where the summer went, and that reminded me that I had some blogging to do…

It was a hot two months for us. For a family that likes to get out and about, we were housebound for much of the last two months. Just a few moments outside were enough for JT to overheat, and we didn’t even venture out to the pool very often. Instead, we just hunkered down in the air conditioning and looked forward to Fall.

In July, my dad decided to build the mother of all treehouses over at camp. No description of mine will do it justice. Let me assure you that you’ve never seen anything like it. It is huge, it is beautiful, and it is up there. Plus, it has a “crow’s nest,” a second story well above the first deck, accessed by a ladder and a trap door. A pulley system and a sliding board round it out. In short, it’s awesome. The boys and I went over in mid-July to watch the Amish crew do a “treehouse raising.” Dad had a few little jobs for the boys to do, and we did some work on the railings too – it was fun to be involved in the project, and the boys took great pride in their role.

In early August we headed down to St. Vincent’s College to watch the Steelers training camp. It was neat to see the players up close, but it was too hot for JT, who spent much of the time in our van with the A/C running. Still, the boys got a bang out of seeing the guys that we cheer for Sundays on TV. Jodi practically stalked Troy Polamalu as he left the field in a golf cart (picture her running after the cart shouting “Troy! Troy!”) but alas, we didn’t get an autograph from our favorite Steeler.

I took JT to Cincinnati once, and then I took both boys the second time. Both trips were a lot of fun, and it was really nice to be able to be part of them since I’m out of the loop during the school year.

On the most recent visit (last week), Jodi decided to move the appointments to Friday/Saturday instead of Tuesday/Wednesday so that JT won’t miss so much school this year. That will cut into our family weekends every three weeks, but she thought the advantages outweighed the disadvantages so we’ll see how it works.

His skin is looking great. Everyone who sees him after not being around him for a while comments on the big difference they notice. It seems like the skin is not only not getting worse, but may actually be getting better. I am therefore very reluctant to cut back on treatments - there is talk of eventually switching to treatments once a month instead of every three weeks, but I don’t think we’re ready for that yet.

We’d planned a quick vacation to New England in July but had to cancel due to the heat. Then, at the very end of the summer, we made a last-minute decision to head to the beach for a few days. It was a long way to go for such a short stay, but it also ended the long hot summer on a positive note, which was nice.

JT celebrated his 8th birthday on August 18. As usual, we celebrated big. Each day, each year with him is a gift and we are thankful, truly thankful for the gift of his life.

And that brings us back to today – first day of school! The boys both got all of their stuff ready last night and were up early this morning raring to go. We are very happy with both of their teachers and feel lucky to live in this great small town with such a great school system. We met with JT’s principal, nurse, and teacher last week and they were all superb – very professional but also totally engaged personally. Both JT and Justy love school and couldn’t wait to tell us all about it over dinner this evening.

It was in the 60’s today! I know that we’re unusual, but we are thrilled to see summer ending and Fall finally arriving – bring on the cooler temperatures! When I got home today the boys were both out running around in the yard, and I was happy for them both – it’s been too hot for much of that recently, and it’s good to be back.

Thank you for checking in with us. I’ll try to keep up with the monthly updates, and as always, we’re grateful for your prayers. God bless

June 2011

cure4treebeard@gmail.com — Fri, 08 Jul 2011 19:54:00 GMT

Well, I finished the last blog entry by writing that JT’s life had been blessedly free of any medical drama for a long time. Ironically, he spent that same night in the ER. So…I won’t be writing that again soon.

Here’s what happened. In Hilton Head, JT was really taken by the tide pools and he wanted to spend a bunch of his time hanging out there. While looking for “aquatic life,” he cut his foot on a shell or rock under the surface. We cleaned it out and figured that the salt water would be good for it. However, by the time he got back to PA, it was angry, red, and infected. We sent a picture to the docs in Cincy and they said to take him to the local ER. The next day, he was transferred to Pittsburgh via ambulance; we thought he was going to have surgery to remove a piece that was stuck in his foot and that this might cause him to miss the last day of school.

However, the Pitts docs were great. The looked at the X-rays again and determined that no surgery would be necessary after all. This was welcome news. Also, Jodi got to meet the head of the BMT department at Pittsburgh Children’s and become familiar with the hospital. Now that we’re “plugged in” there, that’s where we’ll take him for any future medical crises. Anyway, they sent him home and he returned to school for the end-of-the-year celebrations. All’s well.

The next week, Jodi and the boys both went to VBS at East Main Presbyterian. Jodi was in charge of the games, and they all enjoyed the week. We made it up to the hot air balloon festival in Meadville again, one of the highlights of our year. Jodi and I celebrated our 11th anniversary by taking the boys out to dinner with us on the way home. Good times.

Jodi’s yearly MRI went well, so thank God for that.

We celebrated the 4th over at camp with hikes, a float trip, and lots of food. The boys are now old enough to head out into the river, and splash/swim/wade their way to the rocks on the other side. It’s fun to see them enjoying it so much, especially since JT wasn’t allowed anywhere near river water just a few years ago. We are so lucky. Grove City College put on an impressive fireworks display, the first the boys had ever seen, and they thought it was “awesome.” Justy kept asking, “Is this the grade finale?” It was great.

Jodi had a good talk yesterday with a new doctor from the National Institutes of Health who is now tracking and working with all of the families of NEMO patients. Evidently, there are 86 known cases worldwide. They talked for over an hour about JT’s case, and it’s nice to know that a very bright guy at the NIH is working hard to understand more about this condition and how to help those affected by it.

That’s it for June! Thank you for checking in with us. We hope that you are enjoying the summer and we’re always thankful for your prayers for our boy.

May 2011

cure4treebeard@gmail.com — Sun, 05 Jun 2011 18:17:00 GMT

May 2011

Summer has finally arrived! Here in western PA, we had a regular monsoon season instead of a spring. I’ve never seen it so wet for so long. We’ve finally seen the sun during the last week and that’s been a welcome reprieve.

May was good to us. Jodi ran her marathon on May 7. She was awesome. The course was beautiful, following the Susquehanna River for long miles, veering off-road for a stretch, and crossing both a railroad trestle and an antique covered bridge. I greeted her with signs and encouragement at a couple points along the route, and we even ran together for two miles during the 2nd half. Whereas I was nearly incapacitated after I ran my marathon several years ago, Jodi crossed the finish line smiling gracefully, touched her toes a couple of times, and announced that she was ready to grab a quick shower and go shopping at the local festival. Very impressive. And to top it all off, she was awarded a trophy – 3rd place finisher for her age group. We’re all proud of her.

My parents invited us to Hilton Head over Memorial Day so that’s about all the boys talked about for the last month. Justice belted himself into his carseat a full half-hour before we were ready to leave and just sat there in our van, anticipating. Once we got there, JT and Justy had an absolute blast dividing their time between swimming in the pool, wave-jumping in the ocean, and playing “Angry Birds” on Uncle Steve’s iPad. Thanks to Grandma and Grandpa Brown for the great memories.

Only one more week of school! It’s hard to believe that next year we’ll have a first-grader and a second-grader. Both boys switch schools, so it will be a transition. We are so thankful for the positive experience they’ve had. They love school and, I think, will be a little sad to see it go. They’re already practicing for the summer swim team, and we’ve renewed our membership at the pool at the end of the road, so I think they’ll spend much of their summer months in the water. The pool is a huge blessing for us – since JT doesn’t sweat, it’s about the only way he can be outside June-August. I will be either taking or teaching classes for much of the summer, so Jodi, with two wildmen on her hands, is especially grateful to have the pool to fill the long afternoon hours.

Thank you for your continual prayers. During JT’s last visit to Cincy, his ANC looked solid for the first time in a long while. The doctors said his skin looked good, and the graft-vs.-host-disease blood markers were also encouraging. So, Dr. Filipovich continued weaning down the steroids. Please pray for his skin over the summer. We have a full-body swimsuit for him, and we try to be vigilant about applying sunscreen, but the sun can trigger another flare-up of GVHD and at this point, that would be really, really bad. Also, his enthusiasm for food has not blossomed like we hoped it might. He continues to pick at his food, take a few occasional bites, and ask to be excused. We keep hoping that someday he’ll show some sustained interest.

Thank you for checking in on us every month. We continue in a season blessedly free of medical crises, and for that we are very, very thankful. We hope that all is well with you, our family and friends, as well.

April 2011

cure4treebeard@gmail.com — Tue, 03 May 2011 20:17:00 GMT

April 2011: another month that gave us many reasons to be grateful.

In late March, after I posted the last update, we headed up into God’s Country to finish our tour of the Allegheny GeoTrail. It was a weekend full of adventure. There was still snow up in the mountains, deep and frozen. For one of the caches we had to post-hole our way, one laborious step after the other, while the boys “sledded” on the frozen snow on the downhills using nothing but their jackets. I put the van into a ditch on a “No Winter Maintancence” road, we slung mud up to the top of another mountain, found a cache under a bridge… it was a great time. The grace moment was when Justy found a cache that we weren’t even looking for, with no coordinates, all by himself! Since one of the other caches we’d banked on was inaccessible because the snow, he got the credit for saving the weekend. We spent one night up in Potter County in a rustic Bed & Breakfast all in one room together – it was great. It was yet another experience we could never have even imagined a few years ago.

The boys finished up their swim team winter season, and both of them improved mightily over the course of their months in the pool. In fact, Justy received a trophy for “Most Improved” in his age group at the banquet; when he won it, he held it aloft and said “Yes!”, pumping his fists like something out of a Rocky movie. They’re both taking lessons presently and summer practices start in May. Swimming has been a great sport for the boys and the other families are very kind. This really seems to be a place where they belong.

They’re also taking piano lessons and learning their notes. Their teacher is great with them and they enjoy it a bunch. Practice is another matter, but when they keep at it they make steady progress. Many people remark what a strong singing voice JT has, so we’re curious to see what he does with this musical training…

Jodi met with JT’s 1st grade teacher for spring confrerences recently, and the news was very encouraging. He is doing well, making good progress both academically and socially, even though he misses quite a few days of school. Justy was doing so well that the teacher said a conference was unncecessary, so we feel like they’re both off to a good start in school.

Easter was very restful – lots of good food and family time playing board games. The annual epic Easter Egg hunt at my parents’ home in Cook Forest was held inside this year because of the rain.

Justy turned 6 on April 27, and everyone went all-out. Jodi invited some of his friends over for an after-school party, complete with a pinata and every other game you can imagine. Then, my mother made him a homemade Batman cake, entirely from scratch, using the same design she’d used to make me a Superman cake on my 6th birthday. It was delicious.

On the medical front, JT’s blood counts continue to be a little low. The last time he was in Cincinnati, his ANC was down near the red zone, and we were pretty worried. But then the next day, they looked more normal. Just to make sure, the doctors ordered an engraftment study, and the results came back 100% female donor, so his transplant is still working, thank God. We’re not sure what’s up, so please pray that this issue resolves itself. The doctors have decided to hold steady with the steroid weaning for now. We’re okay with this – as much as we’d like to see him off the steroids, the last thing we want to do is go too fast and lose all of the progress he’s made over the last six months. Please pray for the doctor to have wisdom about both of these matters.

And he’s eating a little – hooray! Actually, over the last two weeks, he’s eaten part of a Smith hotdog almost every day (he’s very picky – he only eats Smiths). One day, he ate almost a whole hot dog, which is huge. But other days he seems uninterested again. We hope the repeated good experiences with food will lead to some long-term progress in this arena, so that would be another prayer request.

And last but certainly not least, this upcoming weekend is Jodi’s marathon. Two weekends ago, she ran her 20-mile training run in the middle of a monsoon rain. She came back looking like she’d been swimming in her clothes, but the run went well and it was a real confidence-booster for her. She’s worked hard for this and wants to do well, so please pray for her, that her training pays off with a good, solid, rewarding run.

Thank you so much for continuing to check in on us. I’m aiming to update around Memorial Day weekend or shortly thereafter. We’re going to the beach with my parents, so I hope to have a few good stories by then.

None of this wonderful, abundant life would have been possible without the generosity of JT's donor, the help and support of all of you, and the grace and healing of God. We are blessed and lucky.

P.S. JT is in Cincinnati today, and his ANC came back well within the normal range - great news!

March 2011

cure4treebeard@gmail.com — Sun, 13 Mar 2011 19:41:00 GMT

Hey there friends! Thank you for checking in on our family. I'm committed to monthly entries this year, so please keep coming back. Here's what's up for March...

The Steelers lost and we put away our jerseys for another year. Otherwise, February was a great month. JT's teacher invited the parents in the night before Valentine's Day to decorate desks, etc. As you'd imagine, Jodi did a great job and the next day was an exciting one for JT. Justy was all about the candy, and since JT donates all of his to his younger brother, Justy was in heaven. In fact, tonight at dinner, he argued passionately that "candy" was one of the four food groups despite our attempted lesson on good nutrition.

When JT and Jodi were in Cincinnati 2 weeks ago, they made a big poster about mudpuppies during their long day at the hospital - we'd seen one at camp and it captured JT's imagination. Anyway, they took the display to the Cincy Museum of Natural history, one of JT's favorite haunts, and the curators there were so impressed that they made it an exhibit. So, if you're a guest at our home these days, you'll hear about our little museum exhibitor. For contributing to the scientific community, he earned enough "points" to bring home a piece of petrified wood which he added to his stash of cool stuff. The boy loves science, that's for sure.

We've discovered the show "Man vs. Wild" and that's been a recipe for adventure here in Western PA. Justy has taken to weaving ladders together in the front yard in an effort to scale one of the pine trees. Plus, he's all about jumping creeks, finding sticks and other stuff that might aid his "chances of survival", and wading into whatever wilderness he can find. We've also been reading "The Hobbit" together (Bard has just killed the dragon and the characters are gearing up for the Battle of Five Armies) and the boys have been inspired. Every time you turn your head around here they're egging each other on to perform another manly deed... It's been fun.

If the weather holds out, we're hoping to take an early Spring outing next weekend and do some geocaching up in McKean and Potter Counties, God's country. It will be good to get out and cover some ground in the woods after the long cold winter, and if we're successful, we ought to be able to finish the Allegheny Geotrail, a goal we've been working at for almost three years. We're looking forward to it, especially after getting hammered with another big snowfall last week.

February was the month that Jodi decided the boys had outgrown their room decor so she started her Craigslist/Ebay/couponing magic. Weeks later, JT's room is decked out with Star Wars stuff and Justy's working a Justice League theme, cool given his name. They're growing up.

Jodi, Justy, and I all had some less-than-healthy days in February, but thank God, JT has been well through this whole season. Thank you for your prayers in this regard - we have so much to be thankful for.

Jodi keeps training for her marathon - she logged 12 miles yesterday. The fact that she can make this time for herself is yet another sign that our lives are changing, opening up. It's good.

Please keep praying that the steroid weaning process would continue on track. We're getting down to the level where the problems started last time, so we're keeping our fingers crossed. We've noticed a little increased redness this weekend and we really hope that this will be nothing.

One more thing - among all the special people who have graced JT's life, the Highland school nurses have been among the most extraordinary. Seriously, they probably have no idea what a massive, huge difference they've made in our son's life with their kindness and generosity. Recently, they've been keeping him in pets - first fish, and now a cool, funky frog with its own bowl and habitat. They've developed a really cool friendship, and that's been a major factor in why JT loves going to school every day. It goes to show that ordinary people really can be saints, really can touch a life in a way that will last forever.

Thanks again for checking in. Jodi and JT head for Cincy again next week, and we continue to hope for good news. Please keep praying that his healing will one day be complete.

Super Bowl Sunday update!

cure4treebeard@gmail.com — Sun, 06 Feb 2011 18:42:00 GMT

Super Bowl Sunday update!

So, my New Year’s resolution is to update our Cure4treebeard friends once per month. If you’re reading this, you must be a particularly tenacious and gracious person. You’ve stuck with us for a long time, you’ve continued to check the site, you haven’t forgotten to think about and pray for our son, and for that we are very, very grateful. Check in once a month from here on out and there will be news.

Well, after such a long break in blog entries I suppose I should begin with the important stuff first: Pittsburgh’s in the Super Bowl! Jodi has been playing the Steelers fight song every morning and Justy responds with some mean breakdancing moves under the breakfast bar. They’ve sported their No. 43 jerseys often this Fall, even to church. We’ve watched every game but two, and though no one in our family would claim to grasp the nuances of the game, the boys have picked up enough to run after and tackle each other at every opportunity, shouting things like “I’m Mike Wallace!” and “Touchdown!” and my personal favorite: “Steelers Rule, Browns Drool!” As a newcomer to the Steeler Nation, I confess that I wish I’d started paying attention earlier. And I’m not sure whether Jodi has a bigger crush on Mike Tomlin or Troy Polamalu, but she is into it almost as much as I am. It’s been fun.

Please forgive us for not updating like we should. I see that the last time some of you had news was last June. A lot has happened since then in the life of our family, and for the most part, it’s been blessing after blessing. There have been a few hiccups, so let’s start there and end on a high note.

Last June we were excited that JT seemed to be doing well as the doctors slowly weaned him from his steroids. We had strong hopes that he would be totally off the steroids altogether by the start of the school year, and for a while it looked like that might happen. Alas, it was not to be. Right about the time we got to the 100 mg dose, the skin on his arms began to thicken and constrict and turn bright red again. No good. The doctors immediately put him up to his original dose again, and all of the side effects came rushing back.

That was hard, because we’d begun to see the sweet, thoughtful, calm side of JT’s personality surface again. He is such a wonderful child, and I admire him so much for dealing so well with the steroids’ many side-effects so gracefully. Nonetheless, the side-effects are real and they are a challenge and we’d hoped that he could start the school year sans-steroids. He didn’t.

Also, we took JT to the ER here in Grove City for treatment this summer and while he was there, his port failed. Thank goodness he was stable enough to make the trip to Cincinnati where he had surgery to get a new port placed. The new port took some getting used to and yielded some drama in the beginning, but it’s working great now.

Since then, this past Fall / Winter has been the most stable, most “normal,” least stressful, happiest time we’ve had since JT was born. It’s been awesome, and part of the reason that we haven’t updated the blog was that (1) we haven’t had any pressing prayer requests, and (2) we’ve been to busy having fun together.

Over the summer, some generous friends offered us a place to stay near Ocean Isle Beach in North Carolina. We went for a week, and it was so much fun that we hope to go back this summer. It was counter-intuitive to me at first, but the beach is actually the perfect place for JT in August. Because he can’t sweat, it’s can be a hard time to be home. At the beach, there’s always a breeze, and the ocean is always right there to cool him off. One of the highlights was when, in a crowded restaurant, Jodi accidentally squirted JT’s liquid feeds all over a gentleman sitting at an adjacent table. What a great guy - he graciously mopped up the mess and smiled and made light of what could have been a very awkward situation. Anyway, that trip set us up for the school year.

JT’s in 1st grade and Justy started half-day Kindergarten. Both boys have done very well. Their teachers are terrific and they love going to school. Justy loves to draw and write long, elaborate messages with his letters. JT wants to be a scientist and is always up to an experiment of some sort. He’s either watching the fish in his room, asking to watch a science DVD, or asking questions about how the world works. The school nurses are his best friends.

Both boys also joined the YMCA swim team. I could write an entire entry on the ensuing hilarity, but suffice it to say that it has been very entertaining for everyone, starting with the morning when they were fitted for their Speedos. They’re having fun and getting exercise and making friends, and that ‘s the main thing. Dr. Filipovich says that swimming is absolutely wonderful for keeping JT’s arms flexible and Justy loves the water, so I think they may have found their sport.

We did quite a bit of geocaching this Fall, still trying to knock out the AGT. What that added up to was a lot of time driving through and hiking through some of PA’s best wilderness. We saw elk, we visited the Kinzua Dam, we hiked through forgotten corners of the Allegheny National Forest - it was great.

And as of December 6, JT is four years out from transplant! We celebrated St. Nicholas Day with gusto. I made a traditional St. Nicholas Day soup called “kapustnica” for local family and friends, the kids watched a St. Nicholas Day Veggie Tale video, and we went carolling at a nursing home, passing out small gifts to the residents. Justy had the knack for putting his small gift in the lap of sleeping residents with great care and stealth.

On through Christmas and New Year’s and into 2011! The doctors are once again trying to wean JT from the steroids, and he’s getting right down to the same level that became problematic before, so please pray that it works this time, that he can be done with those steroids that present so many challenges for him.

And JT is still not eating, though he talks about it with increasing frequency. Please pray for some movement here when the time is right.

JT and Jodi head to Cincinnati every three weeks now. This has been a huge improvement over the every two weeks schedule - less time in the hospital, fewer trips, fewer missed days of school - it’s been great. And in other great news, the Ronald McDonald House has recently made a room available for families like ours. Since there’s only one room like it, we can’t always get it, but in the last 2-3 months, we’ve been staying there over 50% of the time. What a blessing that place is - much cheaper, much nicer, much closer, much more convenient - we’re so blessed to have that lodging option available to us again. So, much cause for thanksgiving there.

Jodi is preparing for a May marathon. She told me yesterday how nice it is to have the time to do something for herself...another reason to celebrate this new season.

And that brings us right up to Super Bowl Sunday! Go Steelers! I guess that the next time I update the blog, we’ll know who won. In any case, thank you for praying, thank you for thinking of us, thank you for checking in with us again. Look for more news next month!

Summertime!

cure4treebeard@gmail.com — Wed, 16 Jun 2010 13:15:00 GMT

I guess my lateness is becoming chronic. Sorry. It's been a busy and wonderful year. Justy finished up preschool in April and JT just finished Kindergarten a few days ago. The last week of school JT participated in an end of the year program. I watched in awe as he stood up front singing, dancing and motioning with such exuberance that it filled my eyes with tears of joy. There was a time when we thought JT would not be able to go to school and now here he was, amongst a hundred other children finishing his first year. It was a great day.

The week before Memorial Day Weekend JT, Justy and I got to go to Hilton Head with Brian's parents and his sister Rebecca. Poor Brian had to stay home and work. We had a wonderful time. The boys absolutely LOVED the beach and ocean this year. They weren't a bit afraid of the waves, which earned them wearing life jackets when it was rough. One of their favorite parts was scouring the beach for "marine life", crabs, fish, snails, starfish, sand dollars, etc. If it moved it got scooped into their bucket and then thoroughly examined and poked and proded with sticks and such. It was great fun and JT tolerated the heat well. The week after we returned from the beach JT and headed back to Cincy where Dr. Filipovich said we'd done a good job keeping JT's skin protected from the sun. Yeah!

On the medical front, JT continues to do well. We have our occasional "bumps in the road" when we have to take him to our local ER or pediatrician for a funny looking spot, but all in all he's been doing exceptionally well. JT and Brian are actually in Cincinnati right now getting JT's photopheresis treatments. I'll totally admit that it has been wonderful both physically and mentally to have a break from the every other week trips JT and I have been making for over two years. It's hard that JT never gets a break, but it sounds like he and his dad are having a wonderful time of it on their trip together.

We are still in the process of decreasing JT's IV steroids. For years he received a 200mg bolus and now every two weeks they have been decreasing by 20mg. This week he will receive a 100mg bolus. Yeah! If all continues to go well, JT will be off IV steroids at the end of August. This would be such an answer to prayer. They continue to monitor JT's IGG levels and if all stays well and begins to stabilize he will remian off the subcutaneous IGG and be able to begin immunizations at the end of the summer. His skin continues to look and feel awesome. We are so thankful for the photopheresis therapy and the fact that Cincinnati performs it on children.

We are looking forward to a summer of lots of swimming. It's such a good pastime for our family with JT's inability to sweat. A few days ago we were at the community pool here in Grove City for the first time. The boys were so excited because there are two diving boards, pretty big ones I might add. I was so proud of each of them as they climbed the ladder and ran and jumped off without a fear in the world. They were both wooped after a non-stop hour of this. They like the fact that they were with the "big boys" in the deep end. I was a little nervous when JT asked one of the older boys what kind of jump he should do and the boy said, "do a flip." JT took off booking down the board and promptly did a flip. He's an amazing child with such a joy for living. We couldn't be more proud of him.

Thanks for checking in. Thanks for your prayers. God's peace and joy to all of you.

Still Recovering from the Flu

cure4treebeard@gmail.com — Tue, 20 Apr 2010 16:18:00 GMT

Sorry I'm a little late on this update, we had a pretty eventful Easter and we're all still trying to get back on our feet. JT was scheduled to be in Cincinnati the Tuesday and Wednesday after Easter, but we had to cancel and ended up going the following week.

Here's the saga...During the wee hours of the night on Good Friday Justy woke up vomitting all over his bed. We were up all night with him. The following morning I ran my first ever half marathon as Brian stayed home and cared for poor dry heaving Justy. As soon as I got home our pediatrician called to say Justy should go the the ER to be evaluated and get fluids. He didn't cry a bit when he got his IV started and couldn't wait tto get home to tell JT that he was brave just like him. After the fluids and anti-nausea medicine Justy perked right up and they sent us home. The next morning we headed over to Brian's parent's house in Cook Forest (about 2 hours away) and had a delightful easter egg hunt, delicious meal and good R&R. At about 5 pm I looked over at Brian and told him I didn't feel so well. He looked back at me and told me he didn't feel well either. I'll spare you the ugly details, but within a half hour we were both terribly ill with both D & V. Thank the good Lord above that Larry and Cherry were there to care for our children (and us too). Around 1:00am or so Larry broke the bad news to us that JT was now upstairs throwing up and having D too. Ugh! (we're 2 hours from our hospital that knows JT) Larry (what a saint)had to drive Brian and JT to the Grove City hospital ER. Brian was able to rally himself and make the trip, while I on the other hand, couldn't make it out of the bathroom.

Brian and JT both received fluids and were set to head home. They took out Brian's IV and deaccessed JT's port, and then JT promptly started throwing up again. They decided it was best to admit JT to the ICU so they had to reaccess his port again. JT was so good about it, especially since he didn't have any numbing cream on either time. The next day Cherry and Justy drove me back to Grove City and dropped me right off at the ER so I could get some fluids too. At this point all the nurses knew our entire family has been in for fluids because of the flu. When they asked me for my insurance card I said, "Just put in on our tab." I was discharged late that night and got a good nights rest at home by myself. The next afternoon JT was discharged despite the fact that he wasn't tolerating his feeds yet and still throwing up a bit. The next few days are a blur to me, but we all made it through somehow. Brian, Justy and I are all doing fine now, but JT still is struggling with tolerating his bolus feeds and usually still vomits once a night. He's so amazing about it all. This past Sunday night he had an episode where he was on the toilet and then also had to throw up. Just as matter of fact he told me to go get a bowl. Then as he was sitting there struggling through it all I said, "I just don't get it JT. You did fine all day with your feeds and now this happens. " Then he said, "I don't get it either, but God does."

I was afraid that when we went to Cincy last week that he may have lost too much weight to get his photo treatments, but to my amazement he had only lost a little more than 2 pounds. So they started his procedure again with the new machine but within 5 minutes I heard the trainer tell our nurse to stop the machine. Ugh! There was some sort of blood leak in the machine so they had to abort the procedure. Thankfully they still have the old machine and JT was able to recieve two days of his photopheresis as usual.

We also had a chance to see Dr. Filipovich. She was so pleased with JT's appearance and the results of his immune studies that she decided not to switch him to that new medicine, but just start the weaning of his steroids. It will be a long road to gradually decrease the dose and eventually get off the steroids completely, but this is the hope. I asked Dr. F. if the tests reflect that JT's GVHD is in remission (with a chance to come back) or if it has burned itself out and won't come back. To which she replied, "That's the million dollar question." So we wait and watch and decrease the steroids slowly and hope and pray that the chronic GVHD is gone for good. Thanks so much for checking in on us.