Questions, Answers, Confusion, and Fun

While we were in Florida we received word that the first Covid-19 case had been confirmed in our area. We knew we would be coming home to a different environment than when we left. By the time we returned home The store shelves were mostly empty and toilet paper was completely gone everywhere. We are thankful for the time we had playing in Florida on the days around Alex's appointment and that bit of relaxation and regrouping after her appointment before coming home. When I feel overwhelmed I have a difficult time doing some of the otherwise simple tasks. Writing this update was one of those tasks that has just not gotten done before now. I know so many of you were praying while we were away and I apologize for not getting an update out sooner.

With so many unknowns in the world surrounding Covid-19 we are also unsure how it all will affect Alex's care. As of today all of her appointments between now and May have been canceled. They have told us that her MRI, schedule for early May, will stay on the schedule for now but that it could also be cancelled when it comes down to it. The only concern is that her last labs almost two weeks ago showed her chemo levels were far too low and had dropped drastically since the previous check about a month before. Her dose was changed and after dosage changes she is supposed to have levels checked again at the two week mark. Due to everything going on that appointment has been moved to May 11th. The doctor feels like even with the recent change it is fine to wait but it is difficult for us to not know. We are once again learning to trust in new ways as we know so many others are as well during this challenging season.

Now I will share an update of our Florida trip along with some great pictures of Alex.

It has now been more than two weeks since we boarded the plane for Miami, Florida and yet another "second" opinion. I'm not sure how long we can get away with calling these "second" opinions but for now I am going to go with it.

Since we had to carry Alex's cooler with her medications through security and knew she would need to have her new crutches we called TSA ahead of time to see what we needed to do. They were wonderful and even assigned us an agent, who met us at the entrance and walked us through the entire process. As we waited in line to get our bag checked we were chatting with the agent and realized we shared our Christian faith. This sweet woman was such a blessing during this time and made the process completely smooth and not at all stressful. I was honestly not sure what to expect, having never flown with this situation before. They put her in a wheelchair at the entrance and she was able to stay in it the whole way to the gate so that was easier for her. Once we got through security the agent asked if she could pray with us before we went on our way? We were thankful for this sweet gift and had a prayer together before we went on to our gate. This was one of many sweet things that happened on this trip.

Alex was so cute on the plane. She was very excited about flying for the first time and was given cards with photos of the plane and pilot wings pin from the Pilot. When we first took off she was amazed by the way it felt to rise off the ground. I remember feeling that same way as a teenager, when I flew for the first time, although I had some fear about flying and this little girl was not at all afraid. She exclaimed over and over again how much fun flying is and how she loved it. People around us thought it was funny. When we landed she said, wow, that was not what I expected but that was super fun!!

Alex had only gotten her arm crutches a few days before we left so she had not had much practice. She had been working with a pair of arm crutches at physical therapy the last month or two so she was at least familiar with them. She acted like an old pro and got around beautifully. Of course it helps that she is a go getter and determined to not let anything get in her way. She is loving the freedom she has with the arm crutches that she didn't have with a walker. It is still a bit of a fight to get her to use them as much as she should but for long walking she uses them without argument. She can technically walk without the arm crutches and if you see her out and about you will likely see her hobbling around without them sometimes but we encourage her to use them as much as possible. The primary reason is to keep her back and healthy leg from taking more impact than necessary and for her to maintain good posture when she is active, which is almost always with this girl. With the arm crutches, even though she is still moving in a walking motion the crutches take some of the impact.

We arrived late Saturday evening and were picked up by my Aunt, who helped make this trip possible in so many ways. We were thankful to be able to stay with her while we were down there and for all the fun we had together. Our goal ever since this journey began was that down the road the kids would look back and remember this time because of the memories we made together and not only because of the pain and hard. It was sweet to be able to combine a trip to the doctor with a visit and some beach time with Aunt Peggy. Sunday we enjoyed some beach time, played in the park on the bay, and enjoyed a relaxing day. It was very windy and cool but never too cool for Alex to want to be in the water. It was too cool for me but I still enjoyed the beach and hunting for shells. There is nothing like sitting on the beach and listening to the waves and Alex's laughter.

Monday was doctor day and it was by far the hardest day of the entire trip. While there was some good that came from it there was also some frustration. Since we needed to arrive for our appointment at 10:45 and we were staying over an hour away from the appointment, I had packed snacks and drinks assuming we would have a late lunch. I am glad we planned this way because the wait to see the doctor ended up being much longer than we had anticipated. It was not until 4:00 p.m. when we finally got into a room and 5:45 when we were leaving and heading to find food. Alex was amazing the whole day. It does help that she has the best Daddy who has an amazing ability to help her love life no matter what! We knew so many were praying for us this day and those prayers were certainly felt. This doctor is well known for his experience and knowledge of difficult orthopedic situations which is why we went to see him. He does have some suggestions for possible care but as with most options that have been presented to us it addresses one part of the problem and not another. Again there were questions he was not able to answer for us. It is difficult to navigate all of the different parts and different specialists that go with this diagnosis. We have filed this information away and will continue to follow up on a few other options we have learned about. At this point we are in the information gathering stage and want to make sure to learn as much as we can about many different options so that when it comes time to make a decision we are able to make the most educated decision we can make for her. It is interesting to talk with Alex after these appointments and to hear her questions and responses to our questions. God has given her such a strong spirit and wisdom beyond her years. She is an amazing little gift.

First thing we did after the appointment was find food. We found a great little bar b q place where we were able to order and sit outside to eat. It was good to be able to take this time to talk with Alex and get her take on the appointment. She shared some interesting insight with us during this dinner and even though she is five we listen when she has an opinion or something to share. We know that God loves her and is using her in so many ways.

After dinner she wanted to go to the beach and since West Palm Beach is where Brent and I spent our honeymoon we took some time to drive around and found a beach. The tide was up and it was very windy so walking on the beach, looking for shells, and trying to avoid the little man o war all over the beach was about all we could do but we had fun doing it.

Before we went home we found the hotel where we stayed for our honeymoon and got out and walked to the pier and restaurant where we played and ate on our honeymoon. The pier was actually closed because the water was so rough but it was still fun to stand at the gate over the water and look down the beach where we spent hours walking almost 17 years ago. So many sweet memories.

Tuesday Aunt Peggy took us to the Everglades. What a beautiful, beautiful part of nature. I am always amazed by the many different views as you drive through different parts of the Everglades. I used to think it was all the same but wow was I wrong. The sawgrass prairies, swamps, and hammocks are vastly different from one another but each one is stunning in its own way. The weather was perfect and the animals were EVERYWHERE! We saw more alligators than we could possibly count, great blue haron, anhingas, purple gallinule, anole, night harron, egret, cormorants, ibis, and lots of fish. We even got to witness one of the Anhinga spear fishing. There were two large Gators on the side of the path and we needed to pass them. Alex wasn't completely comfortable with this situation but we all made it through. What a day. Alex had a lot of fun taking video and sending it to her brothers and sister at home.

Wednesday was our final day before we boarded the plane again in the evening to head home. The whole time we were gone Alex made sweet comments about missing her brothers and sisters but by Wednesday so was really missing them. She was asking how many hours until we got to see them, talking about what order she was going to hug them and what they were going to play together when she got home. They were missing her also which is always sweet to hear. We were all looking forward to being back home together as a family.

We decided to go to the beach for a few hours again in the afternoon. It was a perfect beach day but again a little bit chilly. Not as chili as the days before and we did actually go in the ocean together this day. The wind had died down quite a bit after the previous days and this made for wonderful shelling on the beach. There were so many amazing shells just knee-deep in the water so Alex and I looked for them along the edge and did a little swimming and Brent snorkeled and brought in the best of the shells. We had quite the collection by the time we left. We also found quite a few different kinds of sea beans. It's always fun to go to new places and have an opportunity to learn about the area, the animals and plants. It was a sweet time together.

At 7:50 we boarded the plane in Miami to head home. The trip went beautifully and once again getting through security went very smoothly. We were thankful for TSA agents who were great with her and made it an easy process for us all. We had a layover in Atlanta so we did not arrive back in Nashville until midnight. Alex was sad that we were not going straight to Grandma and Pap Pap's to get the other kids but we told her we would see them in the morning. It was a sweet homecoming that morning.

Please continue to pray as we meet with other doctors both virtually and in person, as she has her next full body MRI scheduled for May 8, and as we continue to gather information and get closer to the time when we need to make a firm decision on a treatment direction. As of right now, most non-life saving surgeries are being canceled at Vanderbilt and other hospitals around the country so we will also be waiting to see what happens there before making further decisions.

Pray for the other children as all are making sacrifices for Alex and one another. Pray that we all love one another well.

We are praying for our nation and world as this crisis continues to unfold. We pray for our nations leaders as they make decisions in the midst of challenging times. We pray for the families who are hurting due to sickness, death, and financial struggle.