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
