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It’s a “B” post today! “Busy” couple of weeks, “Back” to school, “Blood” counts are looking good, “Bounced” back to Scottish Rite, celebrating our transplant “Birthday”, and the sweet “Blessings” of health & happiness continue to abound!

8/15/11 Back to School!

Sydney and JT started back to school on August 15th. I have two high-schoolers now, can’t believe it. They are handling the transition very well. Me, not so much. I have been so focused on the kids for the last couple of years that I’m finding it hard to figure out what to do now. As with everything I do…I need to remember to have patience as I enter this next phase in life. My dining room has become a dumping ground for medical papers, school work, old bills, and anything else I can pile in there so I think it will be a good place to start. Clear out the mess and clear out the mind so to speak! I also have a stack of insurance “issues” to resolve. That has always been a thorn in my side and I’ve said it before and will tell you again – when you or a loved one has a major health problem, stay organized and on top of the insurance. You, your medical team and your wallet will be glad you did!

We had our one-year post transplant clinic visit on August 17th. There is nothing else they can do for us from a transplant perspective and we have been officially moved back to the care of our Hematology team at Scottish Rite for continued follow-up. It was a sad and bitter sweet day. I cried when I hugged Dr. Chang and said goodbye. How on earth do you thank someone for saving your childs life? I have nothing to give except my eternal gratitude for what he and his team did for my family the past two years.

JT will begin his immunizations starting next month with our family Pediatrician. We will continue clinic visits with CHOA and monitor his blood counts over the next year. And at the two year mark, JT will then start Survivor Clinic! Speaking of blood counts, for those of you who are interested…our one year counts look like this: White Blood is 1.86 – still low but holding steady. Red Blood is 4.67 – normal! Platelets 121 – still low but rising steadily! ANC .95 – still low but holding steady. And the one I especially love, his hemoglobin is 13.5 – first time being normal since his diagnosis in May 2009!

We celebrated JT & Sydney’s Transplant Birthday one Wednesday the 24th. It was so much fun surprising them in the morning because both had forgot the actual date. Big breakfast before school, birthday gifts, and a dinner celebration that evening at O’Charleys! The only thing missing was Dad in Wisconsin :(  He is coming home this weekend so we will continue the birthday celebration when he returns for a week.

God has blessed us over and over again these past few years. So many things could have gone a different path. The people we have met, the friends we have made, the patience, courage, strength and most of all the hope God has given us have been truly a gift from Him. Thank you for continuing to follow my blog and for all your prayers and encouraging words. I pray as you are reading this, you are experiencing the same gifts from Him in your lives!

xo - Sabrina

Happy Birthday

One year ago, Sydney donated her bone marrow to save JT's life. Happy Transplant Birthday to two awesome kids ♥!!!

"But to all who believed him and accepted him, he gave the right to become children of God." - John 1:12

Summer 2011

Happy summer of 2011! I took some time off from the blog to enjoy a fun filled summer with Sydney and JT. Life has been good. JT’s blood counts were not cooperating for a long time. We ran a multitude of tests and nothing came back conclusive. The doctors said to be patient and wait since he was not getting worse. Slowly, our patience paid off and by the end of July we finally saw an increase in white blood cells, hemoglobin and platelet’s! We received even better news that JT would be allowed to return to school. On August 15th, JT will enter Sprayberry High School as a rising freshman! Our family is very excited to start this new chapter in our lives!

The summer started out with Sydney getting her driver’s license. Jim surprised her by bringing back his old clunker from Wisconsin that she promptly decked out in her own personal style. She loves it and we love the 4 cylinder engine for her! Jim’s Aunt and Uncle were gracious enough to loan him a car while he works up north. A few weeks later, Sydney traveled to Americus, GA to attend the HOBY Leadership Conference as a sophomore representative for Sprayberry High School. It was an awesome experience for her and an honor to receive this award. During the month of June, we enrolled JT in a summer golf camp that was hosted by the Sprayberry Golf Team. He spent each week in practice and participated in four tournaments. He had so much fun, that he is looking forward to trying out for the Sprayberry Team this year. In his first tournament, he didn’t have the energy to complete 18 holes. With the remaining three, he consistently improved his scores and was able to complete all 18 holes. Our coach and the tournament directors were so great to him, knowing his limitations and accommodating him as he built his strength up.

Jim was able to sneak in a week vacation before things got busy in Wisconsin with a new President being sworn into office. It was the first time he got to see JT’s Place in person since Make-A-Wish completed the room in May. We watched a boat load of movies and JT even let him play on the new X-Box. We were also treated to a lovely dinner at Maggiano’s who was running a promotion during the month for Make-A-Wish. Later that week, Maggiano’s invited us back to honor JT as a Guest Chef in a cooking class. Jim was also able to attend one of JT’s tournaments and the two managed to play a round themselves. We ended the week celebrating our 20th Anniversary!

In July, Sydney participated in her first mission trip with the Christeen group from Transfiguration Catholic Church. Many of you sponsored her and we are very grateful for your support. She had a wonderful time, made new friends, and came home with a heart filled of love & joy for what she accomplished. Later during the month our good friends, The Allen’s, invited us to tag along in a beach house they rented on St. George Island. It was a wonderful and relaxing trip for all of us. A great way to end our summer!

Thanks for your continued love, prayers and support. Many of you who follow us on Facebook recently were bombarded with postings that JT was heading back to the hospital. Unfortunately I was on vacation when our Facebook page was updated to a new format and they reposted old news. It was confusing, but I assure you JT is doing great. When you see him, you will be amazed at how healthy he looks and would never know what he has been through over the last year and a half. As a matter of fact, we will soon be celebrating Sydney and JT’s “new/second” birthday in a couple of weeks!

I have so much more I want to say about the life of a transplant family but will save it for another time since I had such a big update today. God Bless you an thank you again for following our journey!

Making Wishes

No new news…try saying that 5 times really fast!

Our last clinic still resulted in low blood counts. He is finally over the virus he had so it’s more of waiting patiently, keep him healthy and hope they start inching upwards. The doctors continue to discuss his case and find different tests to run each time we come in. We are back on the two week rotation. He looks great, is in wonderful spirits and doing his best to behave like a normal 14 year old (mmm hmm).

We have great things in store for him in the next few days so stay tuned for pictures and updates after the secret is revealed! “Making a wish” that his dream for the last two years makes him very happy! He has been through so much and deserves nothing but joy & happiness from here on out!

Love you JT!

Thanks for checking in on us friends & family!

xo Sabrina



Patience or Patients?

Lots going on these last couple of months in The Webster House…

Jim was called back to Wisconsin for his job. We gratefully thank his employer, The Ho-Chunk Nation for allowing Jim the ability to work part-time from Atlanta. Having him here during the two transplants helped immensely so we could keep our household running as normal as possible while having a parent care for JT full time at the hospital and later, at home. He left in March…two weeks before we were due to go on our first vacation as a family in over three years. While not the Hilton Head beach trip we had hoped for as a family, he was able to take a week off to come home to Marietta this week. He’s enjoying family, friends, pets and the warm weather!

A very dear friend of mine loaned us their condo in Hilton Head for Spring Break. It was a trip that almost didn’t happen, but the kids and I were able to pull it off. Their VRBO is #262197 if you are ever looking for a great place to stay! We were able to get away for a week and enjoy some down time, beautiful weather and great food. We were very sad that Jim and friends could not enjoy it with us, but one day we’ll be back!

JT was given the “OK” to return to school in March! We were elated and went through the long process of meetings and paper work to get him back. Unfortunately that was short lived for him. His blood counts took a sudden nose dive and we were forced to remove him from school and possible “germs” exposing him to viruses that his immune system is too new to handle. He sure had a great two weeks with his friends!

Because the blood counts kept dropping and JT developed a cough, the Doctors decided to do a bone marrow biopsy to take a closer look at his cells. Of course, as timing would have it, it took place the day before we left for Hilton Head. In addition, he was given a bag of platelets and a shot of Nuelesta for his white blood cells.

The next day, Saturday, we drove to Hilton Head. I kept JT on his pain pills from the biopsy, but he took a turn for the worse on the 6 hour drive down. By the time we checked in, he had a fever, cough, runny nose and felt extremely tired. I called the CHOA doctors and they advised me to take him to the ER in Hilton Head. They called ahead to let them know we were coming; I tucked Sydney & her friend in for the night, and drove over. They were great. They got him right back, chest x-ray and drew blood soon after we arrived. JT hit it off with his nurse right away and turns out, he moved to Hilton Head 11 years ago after growing up in Heritage Farms (subdivision ¼ mile away from us) and graduating from Sprayberry High School (ours too). I felt tired after the drive, but surprisingly calm, but then started to get a little worried when they began talking about getting an ambulance to take us to the Children’s Hospital in Savannah…I still had two girls left at the condo in Sea Pines! Luckily X-ray was clear, and blood labs came back good enough that the HH and ATL doctors agreed to let us stay. JT has been blessed to not have a fever since his left the hospital in October, but I learned that night that fever is very dangerous for him as he is highly susceptible to getting a blood infection if left untreated. The first half of the week was pretty rough for him as he recuperated from all this, but by the end of his Spring Break, he was enjoying himself and biking around Sea Pines, hitting the ice cream store, exploring the Baynard Ruins and keeping away from the alligators!

After returning, we went back to the Doctors and were given the news that he would have to be pulled out of school again. I was bummed…there are a lot of cool things that JT is missing as a rite of passage from the 8th grade to being a freshman. His class was able to go and tour the high school. We will have to schedule this when he can go alone. They are having a field trip to Six Flags Over Georgia that he will miss and it looks like the 8th Grade Dance as well. He takes it all in stride as he always has.

Bone Marrow Biopsy results came back and white & red blood cells look normal. Platelets did not. Not sure why, but we have to wait and see if it might be a virus causing it. He had another x-ray to make sure his lungs were clear. Or it could be that something was going on with Sydney’s platelets that we missed. We ran labs on her as well last week to make sure and everything came back normal for her. After JT gets over this virus, we’ll see if things change. If not, then we will probably have to do a biopsy on Sydney again to take a closer look at her marrow cells.

So if you’ve made it this far through this post, I congratulate you! I want to make sure I document “a day in the life of a bone marrow patient”. Next time I guess I shouldn’t wait so long to post!

Next step is starting Hospital Homebound School back up this week. Another clinic visit on May 11th and most importantly, enjoying having Jim home after 6 weeks! Thanks as always for checking in and following our journey. And mostly for your continued prayers!

xo Sabrina

Spring Break!

The dropping blood counts still remain a mystery! JT’s platelets held steady at 17k, but his red & white blood cells are continuing to drop. We are scheduled to go back on Friday for a bone marrow biopsy. They want a closer look at his blood, not looking for anything in particular, but rather making sure they are not missing anything.

He’ll also get a platelet transfusion and a new medication, Neulasta, to boost his counts. In the past, he has used Neupogen, but the Neulasta stays in the blood stream longer and only requires one shot. This is good because we are scheduled to go to Hilton Head for Spring Break. The Doctors were him-hawing on whether we should go, but I told them there would be anarchy in the Webster house if I had to cancel this greatly anticipated trip!

As it is, Jim was supposed to take this much needed family vacation, but was instead “ordered” back to Wisconsin full time. Hilton Head will still be fun and relaxing, but it won’t be the same without him. It’s funny how we coasted along for a month only to have this blip in the radar show up the week JT returns to school and right before we go on our first vacation in almost two years! Poor kid to have to go through all this less than 24 hours we are scheduled to leave! I plan on keeping him doped up on pain pills for the 6 hour drive on Saturday and then it will be a week of total rest and relaxation for all of us!

Thanks for checking in. Hope you are doing something fun for your Spring Break as well!

xo - Sabrina

In our world, we write with a pencil...

Clinic visit today resulted in a slight drop to JT’s white blood cells and a fairly large decrease in his platelets.  They are not sure why, but we will monitor and go back next week.  They also decided to keep JT on the Pentamidine treatments and he received one today.  My glass half full moment in all this?  We get to stay with Dr. Chiang, Liz, Patsy, Keyna, and Trish for the time being!  I love these people.  And with any luck, our buddy Creed will have his Mommy schedule March 30 for his next clinic visit!

Happy Anniversary!

Happy One Year Anniversary! Today marks one year from when JT first entered the hospital. What a year it’s been. It is hard to determine survival rates for transplants because there are so many factors to take into account such as related versus unrelated donor, age, disease, graft versus host disease, but because we had Sydney as a sibling matched donor, from what I can tell, survival rate is approximately 70-90%. And our kids went through this process TWICE with the failed first attempt. Can you even imagine? Our family is very blessed.


One year later we are finally on the road to recovery. It’s not over yet, but we are all very happy with the progress made. JT has been cured of the PNH. He is at 98% donor cells. He continues to get stronger every day building his muscles back up as well as his endurance. His blood counts are not quite where they need to be, but the process takes a long time with the year of chemotherapy and radiation he received. They do not start immunizations until at least one year post transplant which will be in August (the beginning of the second transplant) so he will need to avoid people who have mumps, measles, chicken pox, and those sort of diseases. Do people even get those anymore?

The best anniversary news we have is a re-entry meeting at Simpson Middle School tomorrow! We are excited, and yes a bit nervous, to begin the process of re-entering school. He has been “hospital homebound” taught this year. We were fortunate enough to have two great teachers from Simpson, Mrs. Bryant and Mr. Peterson, coming to the house two days a week to keep his academics as up to date as possible with his classmates. It was ended up being a wonderful situation having them and not a county teacher because I felt like it kept JT mentally connected to the school as well hearing stories from their day. He will start back part-time until as he builds his strength up and can handle a full day and a full academic load.

Another piece of bitter sweet news we received is after a March 22nd clinic appointment, JT will be transferred back to his original Oncologist at CHOA Scottish Rite. We will terribly miss the BMT staff at Egleston as they have become like family to us this year. I think they will miss JT as well. Every clinic visit we go to he is greeted with smiles, laughter hugs and lots of joking around. They tell him all the time he’s their favorite patient! It will be fun to see our favorite triage nurse, Dora the Explorer, and Linda Ballard again at Scottish. Come to think of it, he usually had those two in stitches as well when we would leave their office. And on the bright side, the commute won’t be as long.

Thanks everyone for your continued prayers and support. Our family is indeed very blessed.

xo Sabrina

Fourteen!!!

Happy Birthday JT.  We love you!!!

Happy New Year!

Whew, made it through that year! Happy New Year Friends and Family! Thank you all for following along our journey through 2010. And thank you for all your prayers and thoughtful wishes. JT continues to do well. We have weekly clinic visits at the Outpatient BMT Clinic at Egleston where they continue to monitor his blood levels and physical side effects from the transplant. His white blood cells have dropped on a couple of occasions which was easily corrected at home with a short course of Neupogen injections. He has had several courses of antibiotics because his body is not strong enough to fight any infections, so even a paper cut can be bothersome. His weight has been steadily dropping since October, and we are watching that carefully. He is enjoying our switch to high calorie, high fat items like ice cream, butter, chips, etc.! The Doctors are still very cautious about letting him out in public places right now because Georgia has been experiencing a large outbreak of the flu. Originally we thought he would be able to return to school after Winter Break, but they are telling us it will be the end of February, beginning of March at the earliest. We have slowly been weaning him off his medications and he has gone from taking 20 or so pills a day to this week taking only 3 pills! Yeah! The biggest one, his Cyclosporine, should be tapered off in another week. We are so excited to be off this one since it has caused the worst side effects.


It has been quite the year needless to say. We are forever grateful to so many people for helping us through this difficult time. There are so many of you all who I have not been able to thank, but please know that we appreciate everything you’ve done to help our family throughout the last couple of years. I would like to acknowledge the Doctors, Nurses, and Staff at Children’s Healthcare of Atlanta – Egleston BMT Unit. You have no idea how wonderful, compassionate, and loving these people are. They are like family to us and every week we go, we are greeted with smiles & hugs as we enter the clinic. It’s not your typical doctor visit. I would also like to thank CHOA – Northside for their care of JT pre-transplant. We will move back there sometime during the upcoming year where he will be followed as a “survivor” patient. We are excited to see Linda and Dora again…the staff there is just as awesome and we’ve missed them this past year. St. Jude has also been a huge part of this journey and I can’t say enough about this wonderful facility. While I wish no child would have to suffer any disease, it’s truly amazing what they offer to our kids. I would also like to thank Jim’s employer, The Ho-Chunk Nation for allowing him to do his job from Atlanta part-time this past year. I can’t even imagine how we would have gotten through this year without him here. And not to mention, their healthcare insurance plan. Even though we maxed out JT’s lifetime, it has been a humongous burden lifted from our shoulders. Auxient, the company that manages their plan is wonderful and have been very helpful throughout the year as we navigate through the enormous expenses and paperwork associated with a transplant. Our church, Transfiguration Catholic Church in Marietta, GA has also been a tremendous source of support for us. I’d like to express my sincere gratitude to Monsignor Pat, the Anointing of the Sick on August 15th (guess we should have done that before the first transplant!), the kids in Christeen who showed their support during the anointing and later through cards and gifts, Joyce for organizing it all and keeping us connected with everyone throughout the year and for everyone who lifted us up in prayer, we felt all your love and hopefully through this blog, you have witnessed Gods love for all of us!

And finally to our second family, Chestnut Grove. It’s hard to imagine a neighborhood like ours because I think we have something extremely unique and special. Our neighbors are truly like family. Thank you all for the cards, the meals, the gifts, the calls, the rides, the grocery runs, EVERYTHING!!! At times, it has been a little overwhelming and I’m just sorry I didn’t make the time to thank each and every one of you individually. I love and appreciate you and thank you for being there for my family, not just this past year but for the past 19 years…from the birth of Sydney and JT, the infamous move to Chicago (I was so homesick!), job losses, Jim working out of state, diabetes diagnosis, cancer, transplant, the whole kit and caboodle!

Blessings to all our family and friends in 2011! It’s going to be a great year!

xo Sabrina