DAY +100

Day +100! A major milestone in the BMT world and we made it! Most acute GVH (graft versus host disease) would have shown up by now. Any problems that linger get moved to the chronic category to be dealt with on a long term basis. By this time, JT is considered past the worst of the procedure and on the path to recovery. Full recovery is slow, with it taking up to possibly two years for him to return to full health. Even today during our clinic visit, we had a taste of the slowness. JT has been experiencing a light rash on his body as well as an infection in his toes (he had ingrown nails cut out last summer). His white blood cells and ANC blood counts were about half of where they were two weeks ago. This is most likely a result of his body trying to fight the infection and rash. He was on a course of antibiotics the last 10 days, but it has not helped so today he was moved to a stronger dose. He was also put back on the anti-fungal medication that he was weaned off last month in case the skin rash is a result of a fungal infection. He began a week course of shots of Neupogen to boost his blood counts to help his body fight all this crud. This was the shot we gave to Sydney before she went in for her bone marrow procedure. The shots sting and cause bone pain, but it’s a great medication. Otherwise, he is in great spirits, enjoying Call of Duty Black Ops, eating lots of Chik-fil-A and improving every day. God is good!

We had a great Thanksgiving with lots to be thankful for! Sydney and I traveled to my hometown, New Concord Ohio to visit with my family for a few days. It was so nice to get away from my “nurse” roll…it’s been years (seriously) since I’ve left him and it was time for both of us to have a break from each other. And I had the most fabulous time with my wonderful, funny, and delightful daughter! I would road-trip with her any day. We discovered that we are both go-with-the-flow travelers and I think Thelma and Louise would have been envious of our trip!

Jim and JT had a great guy’s week as well. Even though I went grocery shopping with their menu plans, I think they enjoyed O’Charleys quite a few times instead! Thanksgiving Day was spent at our BFF’s, The Allen’s where the entire family has amazing cooking skills. The icing on the cake for JT was Kim’s homemade macaroni and cheese! And that’s not even her specialty…her pies are amazing (her Mom’s secret family crust recipe) and Sydney & I were treated to an apple pie waiting for us when we returned. The week ended with a bang on Friday night when JT hosted a “guys” poker night with his friends Matt, Jimmy, Austin and Cam. Jim was the dealer and cook. I made a brief call during the festivities and they all sounded like they were having a ball.

Like I said, God is good! We have so much to be thankful for and most importantly, thank you for taking the time to read this blog, for praying for us, for thinking of us and for helping us through this journey!

xo Sabrina

Day +75, Happy Dibs Day

Dibs, those yummy ice cream nuggets made by Nestle. I’m proposing November 7th as National Dibs Day. Nestle and Hallmark can thank me later. More about this at the end, first I want to update you on JT.

He has been doing great these last couple of weeks. His appetite is slowly coming back and after a dip in his weight, he’s been holding steady and not requiring any IV fluids for dehydration. The new med, Neurontin, is causing him to be pretty lethargic, and he’s been taking afternoon naps every day. The dogs love it; they always curl up with him! We are starting to see his witty personality pop back up as well. I love his sense of humor and he loves making me laugh. I’m glad he’s feeling good! At last Friday’s clinic appointment, his labs showed that he is pretty much holding steady with his blood counts and chemistry. This is normal and a lot of kids take 6 months to a year before the counts make it back into the “normal” range. Since he went a week without any pain and minimal nausea, Dr. Cheng blessed us with a week off and we don’t go back until this Friday! He also granted JT permission to eat at his other favorite restaurant, Chik-fil-A if I could get them to prepare his meal fresh like O’Charley’s. Everyone reading this that goes to the Sprayberry Chick-fil-A knows how great the Owner and Staff are there and this was no problem. Yeah!  Been twice so far.

So, I’m sure you’re wondering about National Dibs Day. Yesterday was Day +75 (can you believe that?) and I had snuggled in on my couch to watch “my show”, Brothers and Sisters at 10pm, just like I always do. No sooner did I get relaxed that JT said to me, “Mom, can you go get me some Dibs?” And as I have been doing over the last 75 days, I started to get up to do his bidding. And then I thought to myself, hmmm he’s been feeling good, he’s not in pain, AND he’s got a devilish grin on his face. So I responded to him, “Its Day +75 get your own Dibs”!

I think it’s time for all us Mothers to unite, take a stand, make our children responsible (when they’re not sick and need you of course), raise our voices and shout “Get your own damn Dibs!” And if this seems a little harsh to you, then might I suggest a simple, “Go ask your Father”? Happy Dibs Day everyone! Thanks for your continued prayers!

xo Sabrina

Giving credit where credit is due!

Thank you everyone for your prayers and kind words! Thank you to the Doctors, Nurses and Staff at CHOA Egleston, Thank you GOD for your gracious response. And thank you St. Jude, to whom we’ve personally been praying to since JT was diagnosed with PNH in May 2008, and whose prayer “helps remind us that nothing is impossible with God, even help when you’re at your wit’s end.”


Our results from the biopsy on Wednesday concluded the gastritis that JT is experiencing is NOT caused by GVHD!!! What a huge relief for our entire family. What this means is he can begin to wean off the Cyclosporine, the immunosuppressant that we now believe may be triggering some of the negative side effects that JT is enduring right now. The wean will take approximately 8 ½ weeks putting us at the end of December. Once that is completed, our friend can start enjoying all the things most of us take for granted…going to the movies, eating in a restaurant like the new Menchie’s that just went in up the street, going to church, going to an amusement park with friends, picking apples and/or pumpkins, dare I say going to school, attending a football game, traveling to Grandma’s house, going to Target to pick up the latest & greatest video game, and even playing a little one on one b-ball with his neighbor buddies to name a few!

While we are far from out of the woods, this is a huge hurdle we’ve just jumped. In fact, just yesterday JT came down with Thrush in his mouth and added yet another mixture to his medicine cocktail! Today we were back in the clinic for labs and to get fluid IV’s. During all the prep treatment for his biopsy, he became dehydrated and has been feeling pretty bad. He’s having trouble eating as a result of this and appears to have lost all the weight he put on after he left the hospital. So he has some homework this weekend…eating and drinking! His blood counts will take some time working their way up to a normal range, but having had the PNH, JT is no stranger to low blood counts. We will continue to keep a close eye on these over the next several months to make sure he doesn’t develop any kind of infections.

Jim is on his way home from a 20 day trip to his employer in Wisconsin. I am so grateful that they have allowed him to work remotely during this stressful time and understand the face-time that was needed this month, but boy will the kids and I be glad to see him tonight, its been a long month! Today, I take a huge sigh of relief for the first time in over two years and give glory to God in the highest, and on earth peace to men on whom his favor rests (Luke 2:14) !

xo Sabrina

Poking and Proding

What a long day it was for the Webster Family on Tuesday! We dropped Sydney off for school at 7:30 and to the hospital for JT’s scope and biopsy. The procedure went well; Dr. Sauer gave us pictures to prove it LOL/yuk! The colon was clean and in good shape. There were definite ulcers in his stomach causing the stomach pain. The biopsy reports should be back on Friday and we’ll know then if they are a result of GVHD. Praying this is not the case.


JT had a tough time coming out of the anesthesia and after 3 hours in recovery, we managed to get him upstairs to the bone marrow clinic. While there, they drew labs and put him on IV fluids. Finally around 5:30, we were able to load him up in the car and get him home to bed where he continued to sleep until 1pm today! Thanks to my buddy, Kim who sat with me and helped me juggle the day!

He still is feeling pretty bad, but I’ve got him sitting up and sipping water right now. Lab results indicated some stress on the kidneys and unless we can get him taking 64oz. we’ll have to go back to the portable IV fluids at home. We talked awhile about the leg pain when JT was sleeping and the Doctors are now considering that it might be a neurological reaction to his Cyclosporine medication. They added a new med, Neurontin, to the mix to address this and hope that it might provide more relief than the Lortab pain medication he’s been on since our ER visit last Friday.

If JT has GVH, the course of treatment will be putting him on prednisone. This steroid comes with its own slew of side effects and he will have to remain on the Cyclosporine. If the biopsy comes back as general gastritis, then we will begin weaning him off the Cyclosporine. Needless to say, the later is our preference!

Sydney has been feeling pretty stressed out with everything. Her life is interrupted as well when we go to the hospital and she worries a lot about her brother. She is such a great daughter and I hate to see her suffer. Thanks to a couple of great friends, she has been well taken care of when I can’t be there for her and she feels comfortable opening up with them. Jim gets home Friday night. It’s been a long 20 days! Please pray for our BMT buddy, Creed. He is back in the hospital for a couple of weeks and could use your support.

xo Sabrina

Never A Dull Moment

A hectic couple of weeks lately in the Webster house! Jim was called back to Wisconsin and I’ve been playing Mom & Dad for the past few weeks. JT has had continued issues with his gut and has not been gaining any weight. We decided that a GI scope/biopsy and a colonoscopy would be beneficial to test for graft versus host (GVH). The procedure will be done outpatient and is scheduled for Wednesday morning. He also has been experiencing severe pain in his legs making it difficult for him to stand or walk. The pain got so bad last Thursday that we ended up in the ER. They did an ultrasound on his veins and discovered a blood clot. We ended up being admitted by 11:30pm that evening, but the BMT Unit was full, so they put us in the AFLAC Cancer Unit next door. A little louder and the environment was not quite as sterile as BMT…we’ve been spoiled! They decided to do a second ultrasound Friday morning, and praise God; there were no signs of a blood clot. JT had already had two Lovenox shots by then and was very relieved to get the news that he would not have to be on the blood thinner long term again. JT was put through a series of neurological tests that showed no concerns and later had an MRI on his spine to rule out any disc problems. We were discharged with pain medication and home by 8:30 Friday night. And still none the wiser. Hopefully we’ll get some answers this week…it’s starting to take a toll on him. Thanks as always for checking in on us.

xo Sabrina