I’m having so many feelings as I write this because we have had a couple of exciting and eventful days, combined with the fact that we are *maybe* a week away from getting the all clear to come home. I am excited, and sad, and panicking…. but mostly excited!!!
First, I’ll fill you in on the rest of our inpatient stay. After watching the blood cultures grow it was determined that the spot on his ankle and the spot on his pinky that had both become infected are cellulitis. Cellulitis is a bacterial skin infection. Areas of cellulitis are typically red, swollen, warm to the touch, and very sensitive. Caleb didn’t put weight on his foot for days and he would scream if we accidentally touched his pinky or his ankle in any way. Once Cellulitis was confirmed they focused in on 2 antibiotics, Cefepime and Clindamycin. The body works in strange ways and the doctors explained that it’s going to look worse before it gets better. Basically as his ANC started rising and his body started producing neutrophils to fight off infection, all of those cells raced to that area to try to fight off the bacteria. This lead to puss rising to the surface. It sounds disgusting but this is a good thing because it’s the body’s way of expelling the bacteria. Once that started to happen his doctors wanted us to soak his ankle and pinky in warm water to try to soften it and get it to drain. That all sounds gross, but he looked so darn cute soaking his feet. We called it his spa treatment ha ha! We told him people pay good money for what he was getting. He thought it was funny. Luckily this worked and his ankle started to heal. His pinky was about 2 days behind but is now doing the same thing.
We learn how to make our own fun when we are inpatient, which has always included playing games, play doh, going to the playroom, etc. But daddy introduced Caleb to some new fun when they walked downstairs to the vending machines. Caleb now loves to pick his snack out from there. He especially likes the robotic arm that plucks the soda bottle off the shelf and brings it to the opening where you grab it. He is so amused.
Grebbie arrived Monday night, and Tyler was home to see her right away. He couldn’t have been more excited! She arrived right before bed time and helped us get started on his recommended summer reading list… yes, that’s right, recommended reading before Kindergarten. I about fell out of my chair when I saw he already had a “suggested summer reading list”. But the books are pretty cute and I always enjoy a new book instead of reading the same stories over and over.
The doctors felt comfortable sending us home yesterday as they felt the antibiotics are controlling the infection now, and the most recent set of cultures completed the 48 wait period and showed no growth. This means there is no more bacteria in his blood. We went home with Cefepime eclipses, which we give through his port, and oral Clindamycin.
Meanwhile while all of this was going on, myself and the team James works with at Humana were pulling off a huge surprise. For a little over a month they have been planning a trip to Memphis to surprise him. They not only wanted to see Memphis and St. Jude, they also wanted to surprise James with an award he’d been nominated for. It’s something called the Star award, and is a pretty big honor within their company to receive. The funniest part was after a month of planning you would think we actually had a plan, however within the hour that we were supposed to meet them Caleb got discharged from the hospital. Thank goodness Grebbie was in town to help watch the kids. I was scrambling to get James to go to lunch with me, and pack up a whole hospital room full of stuff. Grebbie was very good at convincing James she had everything under control so that we would leave and go to lunch. James just thought we were having a little lunch date since Grebbie offered to watch Caleb. We usually never go to lunch together, so he was hesitant at first but then agreed since he knew it would be nice to get out for a while. When we got in my van I took the wheel and told James I had already picked out a place to eat and was just going to surprise him and take him there. He was like ok… he had NO idea ha ha! So we pull up to my favorite BBQ place and he was like oh, ok cool this sounds good. We walk in the door and straight in front of him is his team from work. I said, “does anyone here look familiar?” and he was like, “what? no…” and then he looked up and saw everyone and it all sank in.
We had a wonderful lunch and it was awesome to get to know the people that James works with every day, and sees when he travels to Louisville. We had a wonderful lunch just chatting a little about life and about work. They were also able to come back to our apartment and meet Caleb (Tyler was at summer camp). They even brought surprises for both kids which was so sweet! Caleb immediately wanted to open his science kit and start doing experiments so they hit the nail on the head with that one! James’ boss, Jim, also then gave James the Star Award and he was shocked again. He was just enjoying the company of his team and had no idea he was also getting honored with an award. It was a very special afternoon.
The next morning James and I joined his team for an official tour of St. Jude. It’s funny because did we really need a tour of St. Jude? No, not really, we are here every day. But did we need a reminder of all that makes this place special? YES! It was amazing to see St. Jude through other people’s eyes who are just seeing it for the first time. It was amazing to slow down while walking through the halls and really look at things, rather than being focused on Caleb and his next appointment. It felt like our time here coming full circle because we were more attentive to details when we first arrived here, but then sort of got used to them. Today was a day to reflect and observe the special details that surround us every day. On top of that we were surrounded by some of the most wonderful people I’ve ever met. His team is so caring, and they are all so willing to support one another in their careers and on life’s journey. Instead of turning on James when he wasn’t always able to work, or may not have been on every phone call this past 10 months, they filled in for him and supported him. It’s rare to find people that are willing to do that. We are so blessed that James has been able to keep his job and still be present at appointments. His team has supported his absence on the rough days, and embraced him on the good days. I just can’t say enough about these wonderful people and their willingness to make the trip to Memphis. Simply incredible!!! I hope to make it to Louisville one of these times to see all of them again.
So, back to Caleb. After most the team left to head back to Louisville, Caleb had a blood draw to check his counts. David, our friend and James’ co-worker, had a later flight so he got to hang out for the day and come to appointments too. Caleb’s numbers were pretty good, but his platelets were low so it was no question that he needed a platelet transfusion today. His Hgb was still at 8.1 but since it’s been consistently dropping each day since his last transfusion in the hospital they decided to do a blood transfusion today as well. The great news is that his ANC is at 490, so his MRI and Lumbar Puncture are staying on the schedule for tomorrow. The platelet and blood transfusions should guarantee his numbers will stay strong overnight so he can have his scans tomorrow, but they will recheck counts first thing in the morning to be sure it’s safe for him to undergo anesthesia. He got a full checkup by his doctors as usual and they were pleased with the way the two infected spots are healing so that will not be an issue that will hold us up for tomorrow.
So what does all of this mean??? It means we are going home SOON!!! We have some anxiety about what they will find in scans, the same anxiety we will have for every MRI for the rest of his life. But, we feel confident that everything will be clean and we’ll be able to leave classified as NED (No evidence of disease) next week! We will get MRI results on Friday. I am not sure if they will want to check counts next week to make sure they stayed up. We think that will probably be the case. And if counts are still strong I think they’ll tell us it’s time to go. Tomorrow will be a long day. As I write this blog post I am sitting in a transfusion room. Caleb is asleep in the bed next to me. We will be here until about 10pm tonight and then have to be back at 8am to start blood work. But it’s ok, because we feel like this is our final push.
As I said in the start of this blog post, a mix of emotions have been rushing over me every day. I’m so excited to get back to Florida and *try* to resume the life we were living. I miss being close to family, and we can’t wait to live in the house we helped design and build. I’m excited to get back to friends, church, bowling, and all the activities the boys were involved in before. But I’m also sad, sad to leave this wonderful place that we get the best care at every day. Sad for Tyler to leave his amazing school and wonderful friends. Sad that our tiny apartment, although small, won’t be our home anymore in 2 weeks. We have made many memories there. Anxious… about all the packing that has to be done and decisions made about what is important enough for us to move back to Florida. Sometimes it’s hard to see how things will all come together but they will. Somehow they will.
I will keep everyone updated on Caleb’s scan results and what the doctor says Friday. I believe that will give us a better idea on exactly what day we’ll be getting on that plane to Florida and leaving Memphis behind!