The cure4treebeard Blog

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.

Great News!

cure4treebeard@gmail.com — Fri, 02 Apr 2010 15:48:00 GMT

Great news out of Cincinnati!!!!!

Every six months or so the docs order immune functioning studies to see how JT’s immune system is coming along. During our last visit to Cincy we found out from our nurse practitioner that JT’s studies looked almost NORMAL! We did not get to see Dr. Filipovich that day, but received word yesterday from her that we could stop giving JT his IGG subcutaneous infusions (antibodies from 40,000 different people). Hallelujah! What this means is that JT is making his own IGG. They will continue to follow his IGG counts to make sure they stay where they need to be, but we are just thrilled about this. Especially since this is the infusion that JT likes the least. When we told JT that we didn’t have to do “shrimps” (this is what we call it) anymore, he threw his head back on the couch and said, “Praise God, Praise God!” As I understand it, this also reflects that the chronic GVHD is under control at the time, because it’s one of the things that was keeping JT from making his own proper levels of IGG, IGA and IGM.

Furthermore, Dr. Filipovich wants to switch JT from the high dose steroids he is on to a new drug they are using for chronic GVHD. We don’t know much about this as we learned about this upcoming change from an e-mail, but to say the least we are ECSTATIC! We have for so long been hoping and praying to get JT off of the steroids. We should find out more about this new medicine next week from Dr. Filipovich.

The other wonderful thing that happened last visit to Cincy was that JT was treated one day with the long awaited NEW photopheresis machine. It was an exciting day as everyone was stopping in to see the new machine and wish us well. But it was also a stressful day for as with most new things, there were bumps in the road and definitely a huge learning curve. Julie, our Hoxworth nurse, did a great job as she was getting trained on how to use this new machine. It is so complicated – WOW! Again, the benefits of this new machine are that it takes less blood out of JT’s body which translates into JT not needing blood transfusions every other week like he was getting. Also, the new technology makes this machine more efficient, thus treating twice as many white blood cells as the old machine did in the same amount of time. We certainly had a few hiccups with JT’s line and occlusions, but the team came up with some good things to try next time to perhaps avoid those issues. As always, JT was a champ. We all continue to marvel at how much photopheresis therapy has helped to heal his skin.

We head back to Cincy this Monday after Easter. We’re hoping to see Dr. Filipovich and learn more about the changes ahead. Thanks for following us on this amazing journey.

Snowed Out!

cure4treebeard@gmail.com — Mon, 22 Feb 2010 17:17:00 GMT

JT and I have traveled through snow, sleet, wind, and pouring down rain on our treks to Cincinnati. We had never cancelled an appointment at the hospital due to weather conditions, that is, until two weeks ago. I was all packed and ready to head out when Brian called and asked if I had checked the weather report . I said "no", I never do. As far as I'm concerned my job is to get my son to Cincinnati every two weeks for treatments. Then Brian said, "have you thought about cancelling?" I had never considered this. It tooks just a few moments for the weather channel to pull up and Brian's words to sink in. Within seconds I was on the phone with JT's nurse practitioner. She was very supportive and thought that JT would be ok waiting a week for treatment.

Soooo the following week JT and headed out to Cincy. We made it there just fine, but the next day by the time we were finished at the hospital and ready to head back to the hotel a blizzard had hit Cincinnati. It was crazy. It took me three tries to make it up the small hill into the hotel parking lot and then the help of the maintenance man to help push us into our parking spot. Needless to say I was a little nervous about our impending drive home the next day. Amazingly by the time we were ready to head home the roads had cleared quite a bit and we had no troubles.

JT's appointments went well. He ended up needing a blood transfusion the first day and then flew through photo treatments. The next day his line was sluggish even with the use of TPA, but he got the full three rounds of treatment. There was talk again of the new machine and hopefully having it ready to go sometime during March - we'll wait and see. It seems as though we will doing these treatments for quite awhile still and sure wish that some place in Pittsburgh would decide to perform this therapy on children. Until then we'll keep trekking to Cincinnati. JT and I make the best of it and his new found love affair with LEGOS has sure helped to pass the time in the hospital.

On the homefront poor Justy has been sick with a cold/cough thing for several weeks now and hasn't been able to shake it. Our pediatrician started him on breathing treatments just today so we'll hope this does the trick. He's still a jolly kid through it all. Today on the way to the doctors he told me he just wished that colds didn't exist.

This weekend Grove City College is holding a Relay for Life event that we plan to take the boys to and then the next night our church is holding a talent show and benefit dinner. JT is signed up to perform a dramatic interpretation on Psalm 46. This is the psalm that we have prayed over him ever since transplant. He knows it by heart and truly is quite the little actor when he recites it. The neat thing is that the benefit dinner is to raise money for a six year little girl in our area that is currently going through a bone marrow transplant in Pittsburgh. JT is so excited to share "his" psalm to encourage Anna.

We are so grateful for where we are on the transplant journey. Thank you for all your love and support along the way!

Routine Cincinnati Visit

cure4treebeard@gmail.com — Thu, 28 Jan 2010 03:57:00 GMT

Hi everyone - Jodi back again. I so appreciated Brian writing the long overdue blog message. He has such an amazing gift with words and writing. He captured so clearly, in one blog, a picture of our family these days and where my heart is also. I get so caught up in the day to day details of our family that I truly appreciate his ability to step back and pull the big picture together for me.

Our "new normal" continued this week with a two day trip to Cincy for photopheresis treatments, but for the first time since we began these regular trips, I felt something very different and very freeing. I felt like the Cincinnati trip was just another thing in our schedule this week. For so many years now these trips and JT's medical care have seemed to me to dominate our lives. After reading Brian's blog I was freed up to accept that this is just how our "new normal" looks. Usually I'm completely exhausted upon returning from a Cincy trip, but tonight after our 5 hour drive home, I headed up to the gym and ran 7 miles on the treadmill. Yeah!!!

Well, enough about my mental health....JT's two photopheresis treatments went well. There was a minor hiccup in scheduling our first day, which played itself out by JT needing to get accessed twice in one day. He's such a trooper and never complained once about it. He is so mature for his years when it comes to medical stuff. We are still waiting for the new photo machine to be up and running. I found out this trip that the hold up has more to do with a staffing shortage than with the machine not being ready. Hopefully this will be resolved in the next few months and we can move ahead with the new machine and see if it makes a difference in JT's treatment frequency. For now we're on the every other week plan indefinitely.

Highlights of our past two weeks include JT swimming the full length of the swimming pool at the YMCA without his bubble. His swim instructor planned on letting him swim half way across the pool, but when JT got there he just kept on kicking and she just let him go and lo and behold - he made it. Everyone in the pool area erupted in cheers when he touched the edge. JT grinned from ear to ear. It was a very proud moment for him, and for me.

Next is the most awesome thing we've ever done in our lives (words of JT and Justy)...we finally were able to go to one of their cousin's birthday parties. For many years now we've missed out on family celebrations with my brother's family due to exposure risks for JT. Not this time. The docs said that if JT is in Kindergarten and doing well, then he should be able to go to a party. We helped celebrate Max's 5th birthday at a place called, "Pump it Up". It was so neat. Four huge bounce around blow ups in one huge air conditioned room open only to the 20 or so kids invited to the party. JT and Justy were in heaven. After the several years of telling JT and Justy they can't go celebrate their cousin's birthdays with them this was sweet, sweet, sweet. JT and Justy talk about Dean, Cole and Max all the time. I love that they are getting to spend more time together these days.

Well, it's getting a little late. I'm off to bed. Thanks for checking in on us. We're so grateful for all the love and support that continues to bless our lives.

A long overdue update...

cure4treebeard@gmail.com — Sat, 16 Jan 2010 15:11:00 GMT

Brian here, almost afraid to admit it: to the charge of “Failure to Blog,” I plead guilty. Believe me, I’ve packed my bags and taken a long and scenic guilt trip, paid for in full by my tour guide and tough-loving younger sister. I offer only apologies, no excuses. However, I guess now that excuses are on my mind, I will offer this after all…

Our life is settling down into a routine and JT’s medical situation is a big part of that routine. Every week it’s a subcutaneous IGg infusion and a steroid bolus through the central line port at home. Every other week, it’s a trip to Cincinnati for more medicine and photopheresis. We’ve tried twice now to switch to an every-three-weeks schedule but his skin quickly changed for the worse both times. We noticed the tightening rings of skin on his arms especially. It’s called “banding” and it’s a sign that the Graft-vs.-Host Disease is still active. So I think we’ll be making the bi-weekly trips south for a long time to come.

I guess one reason I haven’t written a blog update is that the medical issues that once seemed so huge have become commonplace. And perhaps another reason is that there doesn’t seem to be an end in sight.

What at one point was a complete disruption of our original life plan has simply become the new life plan. Plus, at one time, we looked forward to closure. We thought that at some point after the transplant, or after the photopheresis treatments, or after whatever was up next, this whole thing would be “over.” And I see now that I used to write the blog entries that way – like I was writing a new chapter towards what I always assumed was an ending. I guess one day I thought that I’d be able to say, with confidence, “The End.” Not so.

And now that the hospital trips and the procedures and the medical terminology are nothing new and different, the days and weeks and months tend to run together and what once seemed newsworthy now seems just another part of our family’s ever-present reality. Things are much better for sure, in fact things are downright fantastic, but there are some broken things in this world that won’t ever be “all better.” I’m understanding that some of the healing will have to wait.

Enough philosophizing. Sorry we’ve been incommunicado. Practically speaking, we’ve had an outstanding couple of months. In fact, after August’s massive scare with the flesh-eating bacteria and emergency surgery, September through December have been the four best, most “normal” months we’ve had since JT’s birth. It’s been a marvelously good season in a very settled sort of way.

Halloween was terrific – JT was a knight and Justy was a fireman. Twice, while out trick-or-treating, JT actually charged other revelers – one was a college kid clad in a knight costume who felt the smite of our son’s plastic blade; another was a child-ninja who, despite being much bigger and having two swords with his costume, seemed to get the worst of it when JT initiated a duel. Justy extinguished a “fire” at the downtown Subway. Thank goodness this small town is peopled with good sports.

Thanksgiving was a time of thanksgiving. The big day for us was December 6. We celebrated St. Nicholas Day with great good cheer – three years out from transplant! Thank you to our kind friends who remembered. JT has come so far and has been so strong and so brave during the whole journey. The boys opened their stockings and we got into some other generous mischief as becomes St. Nicholas Day. It was a highlight of the year.

Christmas was wonderful – no last minute medical emergencies like last year. In fact, as long as folks were well we were finally able to go to a few more family Christmas gatherings without so much fear of exposure. In some cases, it was the first time some of our family had met our boys, so it was pretty sweet. Towards the end of the vacation time, Jodi and I got away for an overnight XC skiing trip, courtesy of my parents. It was great.

We hope for more good things in 2010. We are so thankful that JT hasn’t had the same trouble with fevers this year – last winter it seemed as though we spent about every other weekend in the Emergency Room. This winter we’ve been home, usually recovering from a hard day of sled riding if there’s been snow. The boys are both still in school – last year they had to sit out from October through March. Their teachers are great, and at this point, I think having a positive association with school is more than half the battle. Also, the boys started attending Sunday school this Fall. Another long-awaited first.

JT still does not eat. I recently learned that Graft-vs.-Host Disease of the skin can actually damage taste buds, and I wonder is this is part of what’s happened. He’s interested in food, but says that nothing tastes good to him. This issue is still on the back burner – once we get the GVHD under control, I think we’ll probably have to start focusing more on this arena.

Well – first I don’t update the blog for two months and then I go on and on… One of my goals for 2010 is more frequent, shorter updates. One thing’s for sure: with my sister to keep me honest, another lapse like this last one is highly unlikely. Seriously, thanks for remembering us, sticking with us, continuing to follow our story even when we fall down in the telling of it. I hope for the best for each of you in 2010.

Back up and running...

cure4treebeard@gmail.com — Wed, 21 Oct 2009 00:02:00 GMT

Friends...Brian checking in...I don't pretend to know what happened to the website temporarily, but we're back in business thanks to the kind and skilled help of the wizards behind the cure4treebeard curtain. Thank you very much Andres and Rorik - you guys are awesome.

Life here is very good. We've been watching the leaves turn, watching the Steelers, watching the boys thrive at school, keeping our eyes open to the miracles of this season. The boys both got their regular flu shots this weekend thanks to the kindness and professionalism of Dr. Hefner's office (thanks Melanie!) We've been out and about enjoying the season - been on a few geocaches, chased a few wild turkeys. The trampoline has been a real hit now that it's not too hot to be out for longer periods - the boys like to mix it up out there, and they like me to come on in as the "ninja master" and put them through some "ninja training." Really good times, believe me.

Medically, they moved JT to an every-three-week schedule after last week's visit. We all really hope that this works for his skin. If it does, it means less traveling, less exhaustion for Jodi, more time in school for JT, more time at home for both of them - it's a big change for the better.

The only health-related school concern has been overheating, especially after indoor recess. Jodi and JT's teacher spoke about it yesterday and he brought a spray bottle with him today and it seemed to go better - he told us that the spray bottle "saved me." His teacher continues to be great, and JT really likes her. We look forward to learning more about how he's doing during the upcoming parent-teacher conferences.

We're uncertain what H1N1 means, but in that regard we're just like everyone else. JT is obviously in a "high-risk" group, so we'll have to be vigilant as the flu season winds up to full speed. Please pray for us that we (and especially JT and Justy) make it through the year unscathed.

Thanks so much for checking in with us. We'll try to do a better job of updating more often in the coming months.

home again

cure4treebeard@gmail.com — Fri, 02 Oct 2009 00:16:00 GMT

Just a quick note tonight from Brian - Jodi and JT are home again, home again after photopheresis treatments Monday and Tuesday. JT's on a hefty oral antibiotic and though the doctors aren't exactly certain what these skin infections are all about, we have a presciption if it happens again so that we can hopefully avoid another weekend in Cincinnati. He is thrilled to be back at school, back sleeping in his own bed, and back together as a family. We had Grandma and Grandpa Brown and Nana over for dinner tonight, and it was really a nice way to celebrate October 1. Tomorrow is the high school's Homecoming and Saturday is Homecoming for GCC, so I anticipate some parades on tap this weekend. Life is good. Thank you so much for keeping us in your prayers - it's such a relief to have Jodi and JT back and the infection stopped.

Hanging Out

cure4treebeard@gmail.com — Sat, 26 Sep 2009 14:55:00 GMT

JT and I are still in the hospital in Cincy, but basically we're just hanging out until so he can get his regularly scheduled photopheresis treatments on Monday and Tuesday mornings. JT's blood culture remains negative, his CBC is normal and he's clinically still feeling great. He is still receiving two IV antibiotics, just to be on the safe side.

This trip has been a little confusing to me. I got the call to hurry up and get JT to Cincy and then when we got here they just started antibiotics. I wondered why we couldn't have just done that in Grove City. Anyway, after talking with the docs and nurses yesterday I understood better the reasons behind the trip. The docs are assuming that these spots are the same as the ones he had before. Now these may end up being a normal part of JT's way he handles a cut, but the docs aren't sure at all about that yet. Last time when he got the necrotizing fasciatis they weren't sure why and they had to be sure it wasn't going to happen again. The bottom line is they don't know what this is, but they want to be very careful with it until they have more history with what these spots are going to do. It's sort of the same as we went through when JT got a fever. At first we had to life flight him to Cincy, then we moved to being able to stay in the GC hospital to now we're able to give tylenol and wait a little to see if we have to go to hospital at all.

I think as the docs here in Cincy get a better feel for what these spots are and are not going to do we won’t have to make these trips to Cincy on the drop of a dime. Frankly, we’ll all be happy when we get to that point because now JT and I are basically stuck in the hospital for the weekend waiting for photo on Monday. Thankfully JT feels fine and we’re able to play and have fun. Although, he did just have a little melt down when I tried to give him a sponge bath. He just started crying and saying he couldn’t do it and as he digressed he started saying he just can’t take all the people coming in a taking his vitals and checking his skin and bothering him so much. I really can’t imagine what it’s like for him. It must be extremely frustrating. Please pray that the weekend goes quickly and we’re able to possibly get out on Monday afternoon so JT can run around and be a kid.

In the hospital again

cure4treebeard@gmail.com — Fri, 25 Sep 2009 12:18:00 GMT

JT has absolutely been LOVING Kindergarten. It's been so good to see. He comes running out of the school everday shouting, "Mommy, look in my backpack at what I did today!" He just seems to love learning new things and is soaking it all up like a sponge. He's also making some friends. I am so happy for him in this arena - it's been long in coming. Overall my little boy is growing up right before my eyes. What a blessing - I remember when he was a baby and we didn't buy clothes in the next size bigger because we were afraid he might not live to make it to that size and now look at him. From the deepest parts of a momma's heart - thank you Jesus!

On the medical front, JT and I are currently staying in room 534 at Cincinnati Children's hospital. A couple of days ago a little black spot showed up on JT's lip and one on his hand. After our last scare Brian suggested I take some pictures and e-mail to our doctors in cincy. I did that yesterday morning and then around 11:00am I got the call from our nurse practitioner to get to the hospital right away. UGH! Quickly I called a friend to see if she could watch Justy until Brian got home from school (Thanks Mindy!) and then got home to pack up JT and me. We made it to Cincy in record time and got a direct admit to the BMT floor. They drew a CBC and blood cultures and initiated IV antibiotics - the big guns. His CBC came back totally normal. We've got to get to the bottom of this. Driving to Cincy on the drop of a dime is unsettling for our whole family and JT truly does not like being in the hospital much anymore (especially when he feels just fine.)

I'll post more after rounds, but for now we're just hanging out playing Rush Hour. Thanks for checking in.