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

DAY +52

DAY +52!  Can you believe it’s been 52 days since the transplant? It’s also been awhile since I’ve been on my blog with any status updates, but quite frankly it’s difficult to write anything because things change around here daily…sometimes even hourly. I do want to keep track of everything that is happening, so I guess even a one sentence update will help me remember what has transpired. Who knows, if you are a fellow BMT patient/parent reading this, perhaps it will help you as well. No two BMT’s are alike, but you’ll get the gist of a day in the life of a patient and their family.

First off let me tell you that during this stage we are waiting, watching and treating Graft Versus Host Disease (GVHD and/or GVH as I will refer to). Even though the engraftment has occurred and we are at 100% donor cells, JT’s T-cells (a type of white blood cell) still recognize Sydney’s cells as being “foreign” so to speak. When this happens, her newly transplanted cells attack JT’s body. It can show up in multiple areas such as the abdomen, the skin, the eyes, the lungs and the liver. It can cause fever, diarrhea, cramping, vomiting, weight loss, rashes, jaundice, hair loss, dry eyes & mouth, hepatitis, lung disorders and digestive track disorders to name a few.

There are two types of GVH. Acute, this usually happens with in the first 100 days of transplant and Chronic which usually starts more than 3 months after transplant. In the BMT world, we often hear how important it is to make it to Day +100. Rates of GVH vary between 30-40% in JT’s “related donor” category. He continues to receive multiple drugs that suppress his immune system and hopefully reduces the chance (or severity) of GVHD. Our prayer is for JT not to have GVHD, either Acute or Chronic.

The standard course of first line treatment would be to prescribe Prednisone, a steroid, for him and because JT is a Type 1 Diabetic as well, we have experience with the horrible side affects it causes not only physically & mentally, but to his insulin levels as well. In the case of Chronic GVD, you’re talking potentially a lifelong battle using this drug and the immunosuppressive drugs he takes now. These later drugs are what cause him to limit his visitors, wearing a mask outdoors, no restaurant food, no fresh fruits or vegetables, no public school, etc, etc, etc. The all important date of Day +100 is typically when the Doctors will begin to wean him off of these. I suppose, that is, if it does not become Chronic.

Having said all that and referring back to the first paragraph, things change daily…sometimes hourly. In a nut shell, he continues to have “gut” issues and we are watching carefully and treating with various medicines. We were warned that we may have to be admitted this week for a GI scope & biopsy, but managed to postpone any testing since he has been stable this week and warding off the vomiting and constipation. He also complained of some eye pain and is scheduled to have a tear duct test next Wednesday to rule out GVH. Another problem he is experiencing is bone/muscle pain in his legs. Today we were going to see the physical therapist, but when we got his blood cultures back, his ANC counts made a huge jump and we think it may be pain caused by his bone marrow growing and not GVH (thank you Lord). We’ve also made numerous changes to the medicines over the last few weeks based upon his blood results. It’s amazing how fine tuned everything is and we are grateful to have alternatives when something doesn’t quite work they way they want it to. I can’t even imagine what it’s like to get a degree in hematology, but I continue to pretend that I am one myself!

We are extremely blessed to have been able to manage all of this from home over the last three weeks. The majority of transplant patients follow up with an extended stay at the local Ronald McDonald House. We managed to convince everyone how responsible we are (by pretending I’m a Hematologist of course) and they allowed us to come home instead. We began with 3 clinic visits a week and last week we were moved to twice a week, Tuesdays and Fridays. At each visit which lasts 2 to 3 hours, they take his vitals to monitor any changes to blood pressure, weight, things of that nature. Did I mention he is currently on blood pressure medication because that is one of the side effects of the other meds! A vicious circle huh? His weight is holding steady, he has an appetite and is eating which is good (and gives us a good vibe for the potential GVH in the digestive system). During the clinic, they also draw blood through his central line and we generally receive the results within a half hour. Based on blood counts and chemistry panels, the BMT doctor makes changes to his medicine dosages. While at home, we watch for signs of illness and infection. I change his central line dressings weekly and flush his lines with heparin every other day. Any fever would be cause for an emergency along with an overnight stay back in the BMT unit for a hefty dose of antibiotics. Knock on wood, we have not had to go that route yet, but plenty of our “BMT friends” who we’ve remained in contact have…more than once. I imagine fever is quite scary for the parents as infection at this stage can be a very life threatening occurrence. Like I said, we are extremely blessed.

A long but overdue update my friends. I think I will try to write a little something after each clinic visit from now on while it’s still fresh in my mind and keep these entries a little less wordy. As always, we thank each and every one of you who continue to follow our journey and pray for us. We appreciate you more than you will ever know!

xo Sabrina

The Hero Goes to Homecoming

For those of you who don't follow us on Facebook, thought you might enjoy some recent pictures of JT & Sydney taken before Syd's high school homecoming dance last Saturday.  Working on an update on JT's status that I will post in the next couple of days.  Thanks for your continued prayers everyone!  xoxo

JT & his Hero...

Sydney before her homecoming dance...

She cleans up nicely don't you think?

Test Results Are In...

At today’s appointment in the BMT Outpatient Clinic, we received the results from the first blood test to see if Sydney’s bone marrow was working yet. Drum roll please…

Sydney blood = 100% / JT blood = 0%

Woo hoo, awesome, grrrreat, yippee kay yii yaa, superb, hot diggity dog, extraordinary, sweeeeet, tremendous, fantastic, marvelous, wonderful, amazing, spectacular, fabulous, magnificent, splendid, cheerio, glorious, outstanding, terrific, excellent, fine & dandy, AND super dee duper!

Clicking the Ruby Slippers!

Cautiously optimistic that JT will be released on Monday to continue his recovery in the comfort of home sweet home! Blood counts have continued to rise over the last couple of days and if we can persuade him to eat and drink then they will let him go. It’s still too early to test the bone marrow to see if it is Sydney’s blood running around and as his counts grow so does the risk of GVHD (Graft Versus Host Disease). Keep those prayers coming, our gracious God is listening to every one of you!  Have a great weekend.


xo Sabrina

We Love WBC's

Status quo for the last week in Room 3202. JT bravely continued to suck it up dealing with the side effects of the transplant. After a tease last Thursday with a bump in his white blood cell count, it dropped back down to zero. He was rewarded yesterday with another bump in the count from 0 to .19. And today he was blessed with it doubling to .36! We’re all smiling ear to ear today with this good news that grafting is finally beginning on Day 22. God Bless you all for your continued prayers!


xo Sabrina

No News Is Good News

Today marks Day 14 (that is 14 days since the transplant/21 days since we entered the hospital) and all goes well. The side effects of the chemo and radiation were pretty intense but right now the worst seems to have subsided. During the last two weeks he has lost his hair, skin has broken out in a rash that they think has to do with his hair follicles, experienced plenty of nausea & and diarrhea, and dealt with what he hates the most…the mucousitis and mouth sores. He’s had plenty of “modern” medicine and machinery to keep him as comfortable as possible. He has a pain pump for the sores, medicine to keep him from throwing up, lotions & oils for the skin rashes, x-rays & oxygen when his lungs started to deteriorate (which has since resolved itself), access to 24/7 pretty nurses (literally, they come in the room every couple of hours), and even more medicine to keep his blood pressure in check from all of this!


He has not been able to eat solid food for almost 3 weeks now. We tried the NG tube for 3 days, but he could not keep it down. The doctors decided to give him nutrients through his central line and that has seemed to level his weight loss out and give him enough energy to do his “chores” – mouth care, physical therapy, and school. The only bad thing about it is the amount of sugar in these bags. JT continues to wear his insulin pump, but where he averaged around 35-40 units of insulin daily has now increased to almost 100 units daily! We had to change out the pain medicine about a week ago because the morphine was causing him to sleep all the time instead of covering the pain and in turn caused the lung problems. We’ve had everything running smoothly for the last few days and as the doctor tells us…boring is good in the transplant unit.

Jim and I continue to swap out every three nights and knock on wood; it has worked well for us. Sydney has healed nicely. She stayed out of school recuperating the rest of the week after transplant and is now back and running with school (trying to play catch up!), tennis, and having fun with her friends. The doctors tell us it usually takes 2-3 weeks before we will see any changes in his blood counts. Specifically they are looking at his white blood cells which are at zero today. Since its day 14, we hope to see some improvement in the upcoming week. His platelet count finally bottomed out last night and he received a transfusion about 4:00am this morning without any harmful side effects.

As they say, no news is good news! Thanks for checking in with us! And thanks also for all the cards, well wishes, phone calls, goodie bags and food too!

xo Sabrina

Happy Birthday!

We’ve had a fairly decent week all things considered. JT had a day off on Monday before Transplant day on Tuesday. I’ve decided we’re going to celebrate a second birthday, August 24, from now on for Sydney and JT to honor what these kids have had to endure. Transplant is pretty anti-climatic for JT and involves an IV drip of Sydney’s bone marrow. For Sydney, it’s much more painful and invasive. For those of you who have witnessed their child coming out of anesthesia, you can attest that it is quite interesting what comes “out of the mouth of babes” during this time! She was able to visit JT briefly after the hour long procedure, then headed home with Jim where she continues to nurse pain & nausea with sleep and medication.


JT began his second chemo drug, Methotrexate, on Day 1 (Wednesday). He’ll receive two more doses – one on Day 3 and one on Day 6 to keep his immune system depressed. His counts are slowly dropping as the pre-transplant treatment kicks in. They expect him to get pretty sick within the next week since they increased the dose of the Cytoxin chemo this go around. He has not been able to eat and as a result has lost 7 pounds this past week. They came in yesterday to put the NG tube in (not sure if that is the correct word, but I referred to it as the nose to gut tube during the first transplant). We managed to postpone the inevitable with the promise of eating. So yesterday he managed two servings of good ol’ Hamburger Helper and half a Snickers bar. Not enough calories unfortunately so today we’ll put the tube in.

The nausea has tapered off for now, but they told him it will return. His taste buds are shot which is part of the reason he’s not eating. He is also developing mucousitis (I have no clue how to spell that one) – basically mouth sores and deadening of the tissue in his throat. They will put him on a morphine pump in the next day or two to combat the pain that comes along with it. The diarrhea continues to be bothersome for him as well. All a part of the process!

On a more positive note, because he is not taking any nausea/sleepy medicine, he has been feeling good enough to resume his laps and the hospital teacher was in for a few hours yesterday to keep him on track with his school work! We’ve also been having fun playing games and watching endless episodes of goofy kid shows. For the next week or so, we’ll continue to keep close watch on his blood counts with the prayer that after they hit bottom, Sydney’s bone marrow will come in do what it needs to as quickly and painlessly as possible. Jim and I will continue to swap out every few days so we can spend time with both kids. As always, thanks everyone for following the blog, checking in with us and most importantly for your continued prayers for our family!

xo Sabrina

Clarification...

Actually, its the end of chemotherapy before the transplant. He still will recieve one more chemotherapy drug after the transplant to keep his immune system suppressed while Sydney's bone marrow attempts to take over.  Sorry for any confusion!

Zombie Blood

Today marked the end of chemotherapy. Thank God we made it through the preparative treatment! Tomorrow JT will get a day of rest before Transplant Day on Tuesday. Jim and I swapped out yesterday afternoon so he is receiving the brunt of the zombie blood side effects – did you see the picture of JT’s pole? Our attempt to inject some humor into the otherwise dull lives that BMT nurses lead.

Most of the radiation side affects taper off in about 24 hours. He’s left with severe nausea and diarrhea. He also woke yesterday to a swollen face because of the fluids his body is retaining. The particular chemo he is on also can do some pretty extensive damage to his kidneys. They have been giving him meds to increase his urine output in order to flush the kidneys. It makes for a long night! It’s been a long hard week for his body, so Monday’s day of rest will be a nice change for him. Not a pretty picture to paint, but it’s a day in the life of a bone marrow patient.

Looking forward to next week! Enjoy your weekend my friends, God bless all of you!

xo Sabrina

Glowing In The Dark

I’m not going to lie, radiation was rough. JT just finished up 3 days of twice-a-day total body radiation and has not escaped any of the side effects that go along with it. We would wake at 5:30 and travel the tunnels under Children’s to the Winship Cancer Center across the street for morning treatment and then again at various times in the afternoon for a second treatment.

He experienced nausea, burning & itching skin, metallic taste in his mouth, thickend mucous, and jaw pain. I'm happy to report that glowing in the dark was a hoax.  He has eaten very little over the past few days and has dropped a couple of pounds already, but the Doctors assured him he will not have to worry about the feeding tubes until after next Tuesday’s transplant. The nurses we’ve had so far have been great and are right there jumping on any discomfort with the wonders of modern medicine.

Despite everything, he still manages to crack a joke or make a witty comment to bring a smile to our faces. Right now he is resting quietly while Jim and I are anxiously waiting phase 2 – chemo – to begin bright and early at 6am tomorrow. Thank you all for your notes of encouragement on Facebook, email, cards, phone calls, the blog, etc.! Keep them coming, he will be getting a higher dose of chemo than the first transplant so we haven’t sailed through this yet!


xo Sabrina

Counting down...

The countdown begins! Just a couple of days left until we start this thing again! The radiation simulation last Tuesday was interesting. JT was measured, cat scanned, x-rayed and prepared for the whole body radiation they will add to his preparative treatment for the second transplant. He will be receiving radiation twice a day for the first three days that he is admitted.


Meanwhile, Sydney signed her “many” consent forms for her procedure and was able to return to school. They decided to add the medication Neupogen to her prep in addition to the iron supplements she has been taking all summer. It’s in the form of a shot that Jim or I will give to her for 3 days before her surgery. I remember taking these shots when I was going through cancer treatment and they are painful…both receiving them and while they are working to boost your white blood cells. I’m sorry she has to do it.

On a positive note, JT gave Dr. Chang his puppy dog look and got him to agree to discontinue his Lovenox shots! It’s a blood thinner that he has taken for the last two years to help ward off clotting side effects of his PNH. These were painful for him as well and caused a lot of bruising so he was very happy.

On Sunday, we have scheduled with our church to have both kids receive the Anointing of the Sick blessing. So if you happen to be thinking of us that evening, we’d love it if you could throw up an extra pray for both of them to have safe and successful procedures.

Thanks for checking on us!

XO Sabrina

Back to School!

Can you believe school started here on August 5th! Both JT and Sydney started with the rest of Cobb County on a hot Thursday morning last week. Hopefully Sydney will only have a minimal disruption to the start of her sophomore year with the delay in transplant dates. We made the decision to start JT’s 8th grade year at school so he can meet his teachers, pick up his books, get his locker assignment and most importantly re-establish connections with friends that he hasn’t seen since last March.

Tuesday morning, August 10th, both kids go to Egleston to sign the consent forms for the second transplant. Sydney will return to school and JT will remain the rest of the day to begin the radiology simulation. The second transplant will include “whole body” radiation to help the chemo wipe out his immune system entirely. More on that later.

JT will go to school the rest of the week. On Tuesday, August 17th he will be admitted to the transplant unit for the second time this year. On one hand, it’s not quite as scary since we’ve “been there, done that”. On the other hand, we’re scared to death because we know what’s coming. I hope he gets a good room…large and with a view, and not next to the Family Room. Hint Hint!

DAY 0 will be the following Tuesday, August 24th. Sydney will be admitted outpatient, undergo her procedure to extract the bone marrow and return to school when she has healed and feeling up to it. She’s been on iron supplements for the past few months and there is a chance that tomorrow they will prescribe additional medicine to boost her blood counts before the 24th.

Thank you everyone for continuing to check in with us this summer. And thank you for staying with us and praying with us during this next round of our bone marrow adventures.

Please GOD, let JT skate through this one as easily as he did the last with no Graft Versus Host Disease, excellent care from the BMT Physicians (who also allowed us to sleep in before starting their rounds at a decent hour I might add), great medicines for pain and nausea, pretty Nurses and PT’s to keep his spirits up and keep him motivated, excellent teachers to keep him on track and ready to return to Simpson, and Dr. Felner, our favorite Endocrinologist, who recommended the insulin drip from the start (maybe have him be on call more frequently this go around).

Only this time with a successful transplant on the tail end to share with all our wonderful family, friends and “Pray for JT” followers!

See you next week from the trenches - XO Sabrina

Hot Summer Nights

Happy Summer to everyone! We are gearing up again to go back into transplant next month, but have been enjoying a very hot June. JT was weaned off all but two of his medications by the end of the first week of June and was able to get out at that time without a mask, enjoy going out to dinner again and having friends over. Except for the tubes in his chest, it’s been somewhat “normal” around the house for the last few weeks. He’s going to the movies with friends, free concerts on Marietta Square, putt-putt golfing, go-karting, hitting the driving range and “real” golfing. He’s also been hanging out poolside tossing the ball to his friends going off the diving board. He even (against my better judgment) has participated in a couple games of tennis dodge ball – a game the kids made up on the tennis courts they play during adult swim. It can be pretty painful sometimes if you miss the dodge. Nothing quite compared yet to a trip to Turner Field on Monday night with friends to watch the Braves beat the Nationals. We got to see Stephen Strasburg pitch from 20 rows up from home plate! It was awesome!


Sydney has been enjoying her summer as well. It started with a week of Drivers Ed training which has taken me some getting used to. She went to St. Simon’s Island for a long weekend with girlfriends to help celebrate a friend’s 16th birthday. She’s started back up at Fergison Tennis Academy three days a week and spends the rest of the time running with friends everywhere!

Jim flew to Wisconsin during this “quiet” time to spend some quality face time with his job. We’ve been very blessed that they have allowed him to work from Marietta during the transplant. He flies back tomorrow evening as we get the ball rolling again.

And so it begins…bright and early in the morning. We have to go through all the prep work like we initially did in March. JT will be injected with the glow medicine (it’s called GFR but I can’t remember the acronym) to test kidney & liver functioning, Echocardiogram, Labs, signing contracts, psychology evaluations, and a new addition for the radiation portion of the procedure. Sydney will also go through the same series of testing with blood work, physical and psychology evaluations and new for her will be some pre medication to help boost her blood cells since she ended up anemic last time. We have four appointments scheduled over the next two weeks to accomplish all of this.

July 20th was the date set to admit JT and when he would begin radiation and chemo. July 27th was the date for the actual transplant when Sydney would come in. However I received a call from the Doctor today and unfortunately that has been delayed because the transplant unit is full at the moment. The plan is to proceed tomorrow with the initial tests and as the July 20th date draws nearer, we hope to have a better feel for a new admit date. I’m not too happy with the news because I wanted Sydney done with her portion and healed by the time she returns to school on August 5th. But as in everything else that has transpired to date, it’s not really in my control is it? And if I think too hard about it, it makes me sad to think that so many children need a bone marrow transplant to save their lives. It’s not an easy thing to go through. Wow…and here my son is doing it twice!

Take care everyone. Thank you for checking up on us and for all your prayers. Hope you continue to enjoy your summer as well!

XO Sabrina

Buy One, Get One Half Off

Went to the doctor yesterday and the initial verbal results from last week’s cell test came back saying JT 100% - Sydney 0%. To say we are disappointed would be an understatement. Plan of attack will be to wean JT off the immunosuppressive drugs over the next two weeks. Give his body a little rest, and then go for Round 2 with a second transplant at the end of July.


Things you shouldn’t really say to your Doctor…

1. Doc: “How is the donor feeling? Is she having any guilt?”. Me: “Of course she doesn’t feel guilty, we’ve already explained to her that it’s your fault the transplant didn’t work”.

2. Doc: “Are you ok?”. Me: after a lengthy pause, “I’m PISSED off at you; I’ll be fine in a minute”.

3. Doc: “Do you have any other questions?” JT: “Are transplants Buy One – Get One Half Off?”.

We all made what we hoped was the best treatment decision possible for the well being of JT. I don’t blame anyone for what happened…it was a chance we took together and unfortunately it was the wrong choice. So if you don’t mind, please continue to follow our journey, pray for my kids and pray for all the doctors, nurses and everyone involved in caring for my wonderful son.

Peace, Sabrina

Hang Tight

Thanks everyone for continuing to check the blog for JT’s status. I haven’t been on here because quite frankly it’s no fun to write when you don’t have any good news to share! Although if I step back and look at the big picture, I do have good news to share in the form of JT is alive and somewhat healthy and driving us all crazy the way every 13 year old boy does his parents – so there you go!


The last few weeks have been pretty status quo. We received the results of the second cell test and it rose to 8% Sydney cells/92% JT cells. Doctors don’t really hold out any hope that the transplant will be a success. However, because it did rise 1%, they wanted to wait another two weeks and run it again just in case it is going up. Two weeks ago they also ran blood test to check for the PNH disease and as they anticipated it has not gone away. Although the percentage of PNH is about 20% lower than it was before transplant. If Sydney’s cells were to start taking over, the PNH percentage would be expected to drop.

I mentioned in the previous entry about Sydney giving platelets – which is not exactly what she would be doing, but the easiest way I could explain it. It’s actually called a peripheral blood stem cell transplant. Dr. Horan advised us in a follow up appointment that he did not want to do it after all because there was such a huge risk of complicated graph versus host disease (GVHD) and he wanted to wait and do a second bone marrow transplant where he felt GVHD has a better potential to not be as severe for JT.

Yesterday, May 18, JT had blood drawn for another cell test. Right now I am holding out hope for a miracle that Sydney’s cells will show signs of growing and begin taking over in JT’s body. Hope, or denial perhaps, but it gives me something concrete to talk with GOD about.

So our new Plan B is a second bone marrow transplant. This time they would do a Myeloablative Transplant. The first one was a Non-Myeloablative Transplant. Myeloablative is a more intense, higher dose chemotherapy and radiation conditioning prior to the actual transplant. The result being a much rougher recovery for JT with a higher risk of GVHD, but a better outcome of success. Sydney will still be the matching donor, her bone marrow is not the reason for this transplant failing.

JT continues to take the immunosuppressant drugs so he must take precautions to protect himself. He has to wear a mask when going out, stay away from people who are sick as much as possible, stay away from public places like stores, movie theaters, and what not. He will not be able to go swimming this summer because of bacterial risks and he still has his central line in. I’m sure he is going stir crazy being in the house all the time! But he hardly ever complains. School finishes up this week so hopefully friends will be around more to visit and do sleepovers.

We should get the new blood results back around Memorial Day. If it is as expected, they will begin weaning JT off the medication, give his body a rest for a few weeks and look at going back into the hospital around the end of June for transplant.

Or “hopefully” Sydney’s cells were just slow out of the starting gate; we’ll see improved results and can just hang tight without Plan B…

xo Sabrina

Keeping the Faith

Frustrating day today. We received the initial blood results on the transplant and it seems JT’s strong immune system is fighting Sydney’s bone marrow tooth & nail. The doctors are not happy with the results and we are bummed to say the least.


They prescribed JT another immunosuppressive drug today called Mycophenolate that he will take 3 times a day in hopes that it lowers his immune system more so Sydney’s marrow can get in there and fight to take over. Right now, it shows 7% “Sydney cells” and they were hoping for at least 25% at this stage. They took another blood draw today and will re-run the test to validate the accuracy.

When those results come back, we will re-evaluate our options. Right now it looks like within the next couple of weeks, Sydney will go back in and give platelets to JT in the hopes that combined with the new medication it will be enough of a boost to get this transplant heading in the right direction.

Not a great start to the weekend, but on a positive note, Jim returned today from a week of working in Wisconsin so we’re glad to have him back before we start this new procedure.

Keeping the faith!  Thanks as always for all your prayers!

xo Sabrina

Modern Medicine

Tonight marks two weeks of JT sleeping in his own bed! Amazing isn’t it? He continues to improve each day and he continues to generate new and interesting side effects as well. During the last two weeks, he has officially lost his hair that he hung on to for so long at the hospital. Just on his head though, I was surprised. They tell us the Cyclosporine that he is on actually causes hair growth so we need to expect it at some time. They said it usually shows up on the face and back which I thought didn’t sound so bad, but then I understood why it’s such a big deal when they reminded me that the female patients don’t care for it too much! Another side effect of the Cyclosporine has been increased blood pressure. They decided to put him on medication at our last visit since he has not shown any signs of it dropping. I was relieved to know that I did not cause it! And lastly, with this medication, it can cause damage to the kidneys and he has had to force himself to drink at least 64 ounces a day of fluids and has been taking magnesium supplements to help his kidneys flush everything out.


Lots of pills although we have managed to keep it to twice a day and it’s pretty tolerable. He takes 100mg of Cyclosporine in the form of a giant horse pill twice a day. He takes three 100mg Diflucan to prevent infection once a day. He takes three 250mg Magnesium pills twice a day for the kidneys. He takes one 5mg Norvasc for blood pressure once a day. He takes one Valtrax twice a day for mouth sores. Beginning Monday, he will add 160mg Bactrim twice a day to prevent infection and he continues his daily shot of Lovenox, the blood thinner, until we know whose blood his body is making. We visit the clinic two to three times a week and they monitor his counts very closely and have made quite a few adjustments to the dosage and amounts of medications.  Modern medicine at its best!

These are all oral meds but he has his CVL in if we need it. The CVL requires being flushed 3 times a week by us along with a syringe of Heparin (another blood thinner) to keep the lines clean. We also change the dressing once a week and change the caps to the CVL’s. I have the flush thing down, but the dressing change is still a little rattling for me. It’s very important to keep a sterile environment down to how you can put the gloves on, to how long you clean the site, to how much air you expose it to. If I’m not exact, then I run the risk of giving him a pretty nasty blood infection that I’d rather not do. I’ve had help from the nurses up until now, but tomorrow is my first time doing it alone – wish me luck!

Another interesting “ah ha” moment during one of our doctor visits was the realization that he has a brand new immune system and when he is cured and the blood counts are back to normal, he will have to go through immunizations all over again for his “baby blood”.

So where do we go from here? Basically it’s a “wait and see” game. They wait until Day 30 before running the blood test to determine whose blood JT is making. Our appointment on Friday was Day 29, so they decided to go ahead and do it early. The test takes 10-14 days to come back and it will tell us what percentage of blood is Sydney’s and what is JT’s. The hope is to have the greater percentage as Sydney. This test will be done monthly with the ultimate goal of having it be 100% Sydney at some point in the coming year. In the meantime, we continue to watch for infections, “graft versus host” disease (symptoms of his body fighting off her blood cells) and complications from the medicines. But now we get to do this from the comfort of our own home! He does not have an immune system that is able to fight infection so he is limited to his visitors, whether you are sick or have any sick family members, he cannot travel except back and forth to the hospital, he has to wear a mask outside the house, he is not able to eat any fresh fruit/vegetables, fast food or restaurant food and he has to continue his “walks” to build back up his strength. Oh yeah, and he continues his school from home!

Thank you to everyone who has been following his progress so far. We are extremely grateful for the continued prayers, cards, Facebook well wishes and words of encouragement!  Have a great week!

XO Sabrina

Double Dog Dare

I wasn't even home after swapping off hospital duties with Jim on Friday when the hospital called..."Mrs. Webster, this is Children's Discharge Department and I'm calling you to make arrangements for JT's discharge on Monday".

After I rudely told her to "SHUT UP!", I quickly pulled over to talk sanely with her.  Yes, its true, we are targeting Monday as a release date from BMT Prison!!!  Nothing short of a miracle, because what we were led to believe in really good circumstances, JT would have been there for at least another 2 weeks.  In fact, we are not even to the point yet in his recuperation that we know if Sydney's bone marrow has taken over yet!  But since he's doing so good, vitals have been good, he continues to eat without the tube (although I have to admit the majority of the calories are coming from ice cream and M&M's) they are confident we can continue his care at home while taking him back & forth to the hospital 2-3 times a week for blood tests.  I told you so many things can happen in a day in the BMT world!  This day was all good!

Thank you God for listening to our family and friends prayers! 

I dare anyone to knock this smile off my face!

The Good, The Bad and The Ugly

Never a dull moment in the life of a bone marrow transplant patient! We’ve had some good moments, some bad moments and some darn right ugly moments in BMT prison. I’ll share some of those with you now. If you’re prone to queasy stomachs, then you can skip over the ugly parts. If you’re going to feel sorry for us, then you can skip over the bad parts. It’s our life and I want to document it because years from now when I’m talking about it with my Grandchildren, I don’t want my memory to be fuzzy and want to tell them how wonderful and brave their parents, Sydney & JT, are. From past experience, I tend to remember just the good stuff.

A day in the life of a transplant patient is never the same. In fact, the day can be good, bad and ugly all in the same day. Some days are all good, and maybe some days are just bad and ugly. So rather than just write about the individual days, I’ve decided it might be easier to write about what makes a day good…or bad…or ugly.

I’ll start with "The Ugly". Now is your time to skip to the next paragraph if you don't like ugly.  JT has had to endure some pretty ugly moments that’s for sure! The worst has been the darn NG Tube I wrote about earlier. When he got sick from the chemo and couldn’t eat, they put the tube in, snaked it through the nose and down his esophagus into his stomach. It has been a constant tickle in the back of the throat and a source of frustration for him. Every time he sneezed or coughed, the tube would ride up and down. The nurses did their best by taping it to his face, but it wasn’t enough. During one particular hard sneeze, it came up high enough for him to start gagging on it…that brought on more spasms and finally the tube came all the way out. The nurse said it was good it came out the nose because a lot of kids have it come out the mouth and because of the cap on the IV end of it, you can’t pull it out your mouth or it will get stuck in the nostril. So a new tube went back in! The second time it came out, JT was in the room alone. I’m not sure what triggered that episode, but it came out his mouth this time. Rather than panicking, JT remembered the nurse’s conversation earlier and pulled the tube out through his nose. I asked him later if he was scared and he said "kind of, but I knew what to do". And then a third new tube went in! There are some conflicting reports on how this tube came out, but he did throw up and claims that although the tube did not come all the way out, he went ahead and pulled it. Ouch. By this time, he was trying to eat solid foods again and his NG feedings had been cut in half. That was two days ago and the doctors agreed that if he eats 1500 calories a day and keep it down; they would leave the tube out. It’s amazing how many calories of ice cream and Snicker bars a boy can eat to reach his goal! Another ugly side effect is the infections you can get when you don’t have any white blood cells to fight. JT got one they haven’t seen in a very long time and CDC’s Infectious Disease was called in to see what it was, how contagious it is, and how to treat it. Luckily, Neisseria Sicca Subflava was caught early and he experienced only a day of fever, nausea and general flu-like symptoms and they nipped it in the butt. The other ugliness of transplant that JT experiences includes tracking and measuring “everything” that comes in and out of his body, weird skin rashes & bumps, and last but not least, the blood transfusion needed when the blood counts drop so low you can’t get out of bed.

Moving on to some of "The Bad moments"…here’s your chance to skip over this paragraph as well! The bad moments include things like frustration he feels when he is sick. Despite the PNH and Type 1 Diabetes, JT really didn’t get sick a lot growing up. He is a pretty active kid and when he’s too tired and achy to get out of bed, he gets pretty frustrated. There is a lot we have to do to keep him healthy and unfortunately he is confined to do this in his room. He’s allowed to leave his room for only one thing, to do laps around the nurses’ station to keep his legs moving and his lungs healthy to prevent fluid building up in them. And he must do this wearing a mask. He hates the smell of it and the hot air of his breathing makes him sweat. We have a small window looking over the roof of the floors below us and the air-conditioning units. Off to the side, we can see a side walk and a pear tree and past the building we can see the sky. At least we have a window!  It doesn't help when a well meaning doctor comes in to ask if he's been down to the garden because its beautiful outside.   Because of JT’s CVL line, he is required to take baths to keep the line dry. Being a shower kind of kid, this has been hard for him to get used to.  But until the line is removed, he goes through a process of taping it off with plastic, draping the IV lines over his shoulder, taping them up as well and sitting in the tub with the IV Pole to the side – not quite the Jacuzzi bath I’m used to soaking in!  Speaking of the central line, it has to be cleaned once a week and have the protective dressing changed. I’ve only seen this done once, but will be trained before we leave because they anticipate keeping the line in for awhile. The process was mind boggling. We wear masks and gowns maintaining a sterile environment at all times. Where the line enters his body is the single most critical site for a risk of infection. It’s got to be hard for him to be cooped up like this. Can you believe we’ve been here 24 days already! The only other “bad” in my mind has been our experience with managing his diabetes and communicating with the Endocrinology team. I’m sure most BMT patients don’t go through some of the aggravations we have had, but I could write a whole other paragraph on this subject alone and digress from why we are here. Suffice it to say, mean Mom & Dad have been quite the advocate for JT’s insulin requirements and care and don’t mind standing up to these doctors on behalf of our wonderful BMT nurses!

And last but not least, The Good! Welcome back readers with the queasy stomachs (grin). I kept it PG if you change your mind and want to go back and read. The good has been the miracle of your prayers and well wishes over the past several weeks. The doctors are thrilled at the progress JT has been making. Despite the blips in the radar, they are amazed at how well he fights each obstacle he is faced with. There are so many things that can go wrong right now with infection, graft versus host disease, marrow rejection and what he has had to date have been just mild cases of each. Every time someone from the BMT walks in the room, the first thing they comment on is how good he looks, how well he has responded to the transplant and what a great attitude he has. The laps I keep mentioning are one of his “jobs”. They hope for 10. A nurse told JT that someone calculated 35 laps equal a mile. The next day, he walked a mile. The day after he walked two! Can you imagine 70 laps in a circle pulling an IV pole and huffing with a mask! He’s keeping up with his mouth care brushing his teeth four times a day and using a special rinse six times a day. The mouth is another high risk area for infection. He continues to keep up with his school work meeting almost every day with the hospital teachers working on assignments from Simpson Middle School. I have no doubt he will complete 7th Grade on time and if his progress remains on the same path as it is, he’ll be starting 8th Grade as we hoped back in school with his friends this August! Our doctor told me today we are experiencing a near-perfect transplant so far. Thank you God!

So after a long winded recap of The Good, The Bad and The Ugly over the last two weeks, I can’t leave without mentioning Sydney as well. She paid the price for her fun weekend I wrote about in the previous entry. She was very sore during the week and had a hard time getting ahead of the pain. She took a day off on Thursday to sleep & heal and made it back to school to finish the week before Spring Break came. I also mentioned that she was interviewed while at East Cobb Park and the article made it into the Atlanta newspaper! I hope you can view it at http://www.ajc.com/lifestyle/atlanta-springtime-allows-for-426828.html we're so proud of her!

xo Sabrina

Brave Five Minutes Longer

“Today I look at my hero and see my beautiful daughter and couldn’t be more proud of her. Today she is giving her brother her bone marrow to cure his PNH and save his life. Today I will be forever grateful to GOD for blessing us with this incredible human being so that we have the honor to be called her Mom & Dad.”


So I wrote that on March 25th – Day 0. And when I got home and was going to put it in my blog, suddenly it seemed so unworthy of a post. I mean, how do you verbalize the miracle we witnessed? How do you verbalize the overwhelming thanks you are feeling? The relief? The debt of gratitude to everyone and especially to Sydney and to GOD. Today I realized the same way we do everything else in our lives, we do the best that we can with what we are given. Those words were given to me in a moment of time during that day and now I give them to you. I hope you find something to be thankful for today.

I’m sure you are wondering about the whole transplant process. Well after 10 extremely hard days for JT to prepare his body for Sydney’s bone marrow through some pretty intense drugs, the day was long and not quite as difficult for him as it had been. Sydney came to the hospital at 7:30am for her pre-op assessment and prepare for her surgery. There was a lot of sitting around and waiting to meet different doctors, sign consents, and receive instructions. The actual surgery didn’t begin until 10:30am. We had a private room to sit in during our wait with chairs and a TV. Jim, his Mom, and I were with her and JT remained in the Transplant Unit in his room watched by the nurses. Sydney was given general anesthesia and the operation took approximately an hour and a half. Two of the BMT Doctors performed the surgery by inserting large needles in both of her hips, into the bone and extracting approximately 2 liters of marrow out of it. It was then transported upstairs to JT’s room where it was infused in him over a 6 hour period. They didn’t have to “clean” up the blood as I originally told some of you because Sydney and JT share a matching blood type as well. If the blood type did not match, they would have to remove the red blood cells.  One more miracle to add to our list!

After an emotional recovery (anesthesia can do that to you) we wheeled Sydney to JT’s room to rest for awhile and for all of us to be together. The actual infusion was in a drip into his Central Line and is a similar process to a blood transfusion. I thought the marrow would be thick but the nurse told me they add saline and heparin to it to thin it out for the drip.

Jim stayed with JT for the next couple of days and so far JT has shown no signs of rejection or allergic reaction. They began a new chemotherapy called Methotrexate to keep his immune system suppressed for the next two weeks. They anticipate it taking 10 to 14 days for the bone marrow to graft and JT’s body to start making new cells. This is an average, so don’t call me on April 11 – I’ll be in touch.

“Grandma” and I took Sydney home where she slept the rest of Thursday and managed to get up and eat a little supper before sleeping the rest of the night. Friday she rested most of the day on some pretty good pain meds and later had a fun night with a visit from two church friends, Ethan & Jonathan who kept her entertained for a few hours. Saturday she was “sucking it up” once again to fulfill her social calendar obligation and insisted I take her and school friends Katie, Naomi & Eka to East Cobb Park to hang out. It was a beautiful day and I couldn’t resist. The highlight of the afternoon was an encounter from an Atlanta Journal Reporter who snapped shots of the girls and they are hoping to be in next Sunday’s Leisure Edition for an article on Spring! We ended the day with a donor celebration dinner treated by Grandma. Today I am at the hospital with JT hoping she is resting quietly because she is insisting to be at school bright and early tomorrow. You go girl!

JT continues to take it easy, doing his “chores” which mainly consist of laps around the nurses’ station, breathing exercises, school work and mouth care. I brought him some fettuccine alfredo and he ate for the first time in about five days! Who can resist the Stouffers? Our friend Kim sneaked his favorite fruit roll ups into my suitcase and JT has managed to eat and keep down 4 of those since I’ve been here. I can’t even imagine how that is sitting on an empty stomach. Hopefully I won’t have to “see”!

Today I am thankful to you my old & new friends and to my family for their continued prayers for a safe and speedy healing for my two brave children. I am thankful that Jim is home from Wisconsin. And I am thankful to GOD for continuing to show me ways to laugh and smile and to be at peace with this.

xo Sabrina

“Oh, give thanks to the LORD! Call upon His name; Make known His deeds among the peoples!” 1 Chron 16:8.


“A hero is no braver than an ordinary man, but he is brave five minutes longer” (Ralph Waldo Emerson)

The Tube

Chemotherapy. Not much to say, it sucks. But it’s over and today is a day of rest. Except for one more tiny procedure. JT has not eaten in the last few days, so that in order for him to get the nutrition he needs and keep his digestive system in working order, they installed an NG Tube. I like to call it the nose-to-gut tube. He was not happy, but pretty Brittany came to walk him through it and be here for him & hold his hand, so he agreed. It’s another one of those “standard procedures” in the BMT world that somehow slipped the initial consult meetings and handbook. So now we rest and wait for Day 0, Thursday, March 25, 2010.

Home Away From Home

Where do the days go? The first week in the Bone Marrow Transplant (BMT) Unit has been a whirlwind of people and medicines! There have been a lot of both. JT entered the Unit on Tuesday morning and promptly asked if he could go downstairs to the cafeteria. The kind nurse informed him this was his home away from home for awhile and the only time he could leave his room is to do laps around the nurses’ station. That, among some other rules & procedures that they failed to mention in our consults, really hit hard for all of us with the realization that we are moving forward to a cure and just how serious a transplant can be.

The first round of medicines that JT started on is something called Antithymocyte Globulin or ATG. There are two types…rabbit and horse…they have him on rabbit. ATG is immunosuppressive “drug” that works to prevent rejection of Sydney’s bone marrow. I haven’t been able to find a good explanation on line to link for you, but from what I gather, the addition of ATG greatly increases the odds for a successful outcome of the transplant (and I could go into a little conversation about T-Cells, but I won’t bore you). So my little bunny received four days of it along with copious amounts of steroids, Benadryl, Tylenol, and other happy medicines to deal with all the side effects.

Today, JT received his first round of Chemotherapy. He is getting two drugs in his cocktail. One is called Cyclophosphamide (Cytoxin) and the other is called Fludarabine. Both these drugs work to suppress the bone marrow. He will receive these on & off for the next four days. On Tuesday he will begin another anti rejection immunosuppressive drug called Cyclosporine, and then on Thursday he will wake up to Transplant Day!

He’s had many different reactions ranging from fever, to headache, to nausea, to agitation and the nurses have been really good about treating all of them. The biggest problem we’ve had this week has been his blood sugars. The steroids, in addition to making him meaner than a junk yard dog, wreak havoc with his diabetes. This has been our only issue that we’ve really had to go to bat for JT’s well being and after 4 days of arguing with Endocrinology, I think they are finally on the same page with Jim, I and the BMT Team.

So for those of you who have stuck with the boring medical part of this entry, now to answer your burning questions…No, JT has not thrown up yet. No, JT has not lost his hair. No, the sharpie autographs wore off. Yes, JT has attended school (and according to him liked it – go figure).

As far as the rest of us, we are doing great. Jim and I have tagged team every other day all this week to keep ourselves “fresh” to care for JT and Sydney. What we discovered quickly though is we really didn’t have time to accomplish anything at home that needed to be addressed because we were always on the move between home & hospital. Beginning last night we extended our stay to two nights in the hospital with the hope of resting, relaxing and taking care of business while we are home. In addition to that, we’ve been able to continue to attend Sydney’s tennis matches, get her to school, practice and to hang out at the mall or friends houses and keep life as normal as possible for her. She came to the hospital on Friday to visit, but after a long day, JT was sound to sleep by the time she arrived. She came back down today for the first dose of Chemo and to have lunch & watch a movie with him.

I will try to track down an address if you are interested in writing him a letter and post it in the next day or two. JT has also been keeping up with friends on Facebook, texting, and playing COD with his friends from school on the PS3. He also enjoys reading your posts on the Pray for JT Facebook group and watching the number of members grow, so from the bottom of my heart I really appreciate your support. We do not need anything at this time. We have so many games, books, art supplies thanks to our wonderful teachers and friends. We are trying to rotate them out because there are too many to keep in our cute little room. We got a digital frame as a gift from a friend which I thought was a great idea and we are in the process of loading it up with pictures for him to have in the room. So if you feel the need to do anything, then email or post a picture of you to the Facebook group and we can add them to JT’s collage. Thanks everyone for the prayers and well wishes. It has been a great source of comfort.

Have a great weekend!

XO Sabrina

Hair Today Gone Tomorrow

Time fly’s when you’re having fun right? We packed a lot into the week to see as many family and friends as possible before JT will be admitted to the hospital. We have the greatest group of friends and appreciate all they have done.

The beginning of the week was the final doctor meetings and consents. Wednesday, we enjoyed cupcakes with neighbors at our friend Lina’s house. On Thursday, our favorite hair dresser Gina @ Variations shaved his head. JT had always talked about having his friends at school sign it and although the Doctors thought the request was a little strange, the end result proved to be quite fun for him. I’ll upload some pictures if you missed them on Facebook. Friday night was dinner with our dear friends and second family to JT, The Allen’s. On Saturday, friends Mark & Kim Hawks treated us to a night at Big Canoe in the N. Georgia Mountains to chill and relax and forget! A special thank you to all of you who joined us this past week and especially to Simpson Middle School for making JT’s last day special, putting up with the autographing, the goody bags & gifts and throwing him an ice cream party. And to the Addison Elementary Teachers who put together the most awesome gift/activity box to take to the hospital!


Today has been a slow start to the surgical portion of the week. We woke at 5am to make it to the hospital by our appointed time of 7:45 to have the central line installed. Unfortunately there seems to be a lack of surgeons and more emergent cases than JT’s. Doesn’t make it any easier for a 13 year old hungry boy that can’t eat or drink before his procedure. We’re just happy his blood sugars (he’s Type 1 Diabetic) have remained stable. The anticipated surgery time has been moved to 2:00 and we have high hopes to be finished before rush hour when we drive home.  He'll be released tonight only to turn around and be admitted to the hospital tomorrow morning to begin treatment.

Until then, thank you all for your continued prayers, comments, cards, and signing the Facebook wall on the group “Pray for JT”!

xo Sabrina

Last Week of Whatever You Call Normal

It seemed so far away last week.  Only seven more days now of school, homework, cleaning your room, feeding the dogs, getting yelled at for playing on the PS3 too long.  He has been extremely tired and achey this weekend and it was hard to rouse him for school this morning.  I hope that is GOD reminding me of the better days that are coming.

I also wanted to say a quick "thank you" to everyone who has joined the "Pray for JT" Facebook page and are praying for a speedy & succesful recovery.  It is very heartwarming to see the response the page has generated in such a short amount of time and not a day goes by that JT is checking it, reading your words of encouragement and commenting as the number of members increase.

Some key dates coming up: 

March 15 he will be getting a central line put in.  This is called a CVL or Hickman among other things.  It will give the doctors a semi-permanent access to administer all the medicines he will be recieving.  After all of the IV's he's had these last few months I think he may actually be looking forward to this.  He will be sent home that evening with a large dose of steroids...look out diabetes!

March 16 he will be admitted to Childrens Healthcare of Atlanta at Egleston.  He will be begin his chemotherapy to prepare him for transplant.

March 25 Sydney will be admitted for her procedure to extract the bone marrow.  She will be sedated for about two hours while they enter through the back of her hip in a series of multiple "pokes" into the bone.  If I remember correctly, they are looking to extract about 2 liters.

March 26 is what they commonly refer to as Day 0 in the BMT world.  This is the day that JT will receive the bone marrow from Sydney.  It will be in a drip bag into the CVL similar to a blood transfustion.

xo Sabrina

So many doctors!

JT has had to go through a series of tests before the actual transplant can begin.  A week ago Monday he had a PFT - pulmonary function test - for his lungs at Scottish Rite.  It mostly involved heavy breathing into tubes that made him dizzy and act goofy.  I know, not like him huh?

Then on Tuesday we were at Egleston most of the day testing his kidney function via a test called a GFR.  This was done by injecting nuclear medicine into his blood and doing a series of blood draws via an IV over a 5 hour period.  The levels of the radioactive material were measured to make sure the kidneys were filtering properly.  He was not glowing that evening when he went to bed, so I am assuming all went well.

He also had an echocardiogram to check his heart.  This was done by sonogram so it was a little more fun for him.  The doctor gave him two thumbs up on his results...the kid has a good heart.

We met with his Child Life Specialist who will work with JT to make sure he is happy and has everything he needs during his hospital stay.  He says he and "Brittany" are tight.  She was pretty cute.

A meeting with the Financial Counselor was eye opening and jaw dropping so I'll spare you with the details for now.  Suffice it to say, the Webster Family may be selling some lemonade on a street corner near you this spring for a little fund raising.  More later...

The day ended on a high note for JT in a meeting with his new school teacher.  YES...we will be attempting to complete 7th grade with the help of a hospital teacher and the Cobb County hospital homebound program so he can join back up with his friends at Simpson MS in 8th grade later this year.

On Friday that week, he ended it with a last visit to the dentist.  He will have to pay special attention to his mouth care through out this process because a lot of infections can occur as well as he will have sores to contend with.  He also will not be able to wear his retainer (not that he did to begin with) and we're already looking at another round of braces when this is all over because we can see the shifting!

This week we were back down to Scottish Rite on Monday for a bone marrow biopsy.  They needed to test the marrow to make sure there were no signs of developing Aplastic Anemia or MDS - two complications from PNH.

On Tuesday, it was another trip to Egleston through the pretty snow for another series of meetings.  Sydney came with us this time to have a physical and her lab work (blood draw) completed.  She had an opportunity to meet with Brittany as well.  JT had another blood draw - not sure why, but didn't ask since every time we go somewhere with him, someone is poking him with a needle.  Our Transplant Doctor, Dr. John Horan, came to speak with us about the transplant process and ease many worries Jim and I have.  JT is in good hands and we left feeling very comfortable with all of Dr. Horan's decisions.  Before we left, we had a family psychology pre-evaluation.  They wanted to gauge our stress levels going into transplant.  I would love to interject with something funny here - but at the risk of sounding sarcastic, I will only ask you to consider if you would be stressed in this situation?  Seriously though, I think the whole team approach will be great for our family and its nice to know that our entire family is being looked after and cared for mentally as well as physically during the transplant!

Today, JT had an eye exam.  And tomorrow he is heading back to Scottish Rite for an infusion of Soliris.  Without getting into too much detail since I'm "bloggin' like no tomorrow" here, JT has been participating in a pediatric clinical study at St. Jude since November for this drug.  It is the only drug on the market approved for adults to help the symptoms of PNH and particularly important for those who do not have the option of a bone marrow transplant.  He finished the trial two weeks ago and will continue on the Soliris until transplant.  Next week we have one final meeting with Dr. Horan on Thursday along with expected labwork and meeting with the BMT nurse.

I'm not seeing my trusty spell check on this blog site yet, so bare (or is it bear) with me when I send these messages.  Those of you who know me well, know I will be fretting if I see a typo!  This was two weeks of updates and hopefully future postings won't be so lengthy.  Thank you all for following us, thinking of us and most importantly praying for us.

xo Sabrina

What is a bone marrow transplant?

http://www.choa.org/default.aspx?id=739

What is PNH?

http://www.pnhsource.com/Default.aspx

Here We Go

Is this really happening?  In 14 days JT will be admitted to Childrens Healthcare of Atlanta for a bone marrow transplant.  I am creating this blog to keep you up to date on his progress.  Give me a few days to set this up and learn my way around this program, I'm new at this.