Cast off and Infusion day

Anna Morgan
Jul 1, 2020
6 min read

Monday morning Alex and I took off for a day of appointments at Vanderbilt. It started with our visit to the cast room and orthopedics to get the cast off, BIG YAY!! She had x-rays, and visited with our wonderful doctor to decide what to do to support the leg between now and her surgery date in August. Alex was nervous for the cast to come off but all went very smoothly. I don’t think she has ever had a cast taken off where there hasn’t been something strange found. The first cast, last summer, was waterproof and the week before it was removed we had a family reunion at a river cabin. She spent days playing in the sandy bottom creek and when that cast came off we found sand and tiny pebbles. with the next two there was plenty of dirt because there is no slowing this girl down which always presents opportunity for messiness. I knew there would be dirt in this one because she helped me in the garden several times last week and at least once I caught Boone dumping dirt on her cast. That boy is a million miles a minute from dawn till dusk. This time we found a grass seed head that had gotten in her cast at some point and her skin was growing over it. It was not bothering her and was simple to pull out but was definitely a strange find. Alex wanted me to take a picture to show everyone. She said she was trying to grow grass on her foot!! 😄 You can also see the signs of playing in the dirt from the look of this dirty little foot!

After we got the cast off and had x-rays, she was fitted for her new clamshell brace Melissa, with Hanger Clinic, has made for her. Melissa is amazing with Alex and always makes sure the brace is perfectly fitted and comfortable before she sends us on our way. We also met with the doctor before we left. This was the first time we had spoken with our Vandy team in person since finalizing our decision to schedule the rotationplasty with Dr. S in Baltimore. Dr. Johnson was wonderful. She was the surgeon who did Alex’s first biopsy May 2019 and I will never forget first meeting her. She has been our constant presence for every break, Difficult conversation, diagnosis, and frustration along the way. We have had many hard conversation and she has always been a safe place where we knew we could ask crazy questions and have honest discussion. She has always been willing to say when they just didn’t know the answer and to speak to other doctors on our behalf when necessary. She has been supportive of our decisions and validated our decision for Alex. The more we have all watched this leg get shorted and smaller the more we have realized what it would mean to try to fix the leg. It was a bitter sweet chapter closed. We have certainly been blessed with supportive and caring doctors through all of this.

Our next appointment was for her blood draw to check Chemo levels and IV for her bisphosphinate infusion she needs before surgery. She is so incredibly tough. As always, she informed the nurse where she wanted to be stuck and took her deep breaths and it was done. The nurse was really sweet and agreed to try her hand even though she said it would be a harder stick. Alex was determined that was where she wanted it. Thankfully she has handled all of this very well so far. The infusion took an hour and we read books and she played games on the iPad. She said the best part was the crunchy ice from the machine. She chewed soft ice most of the time we were there. She is her mother’s child!! She has been very tired since the infusion and has been sick to her stomach off and on.

Check out her new butterfly brace!

This is the tired, I don’t feel very good face that showed up about halfway through the infusion. The ice machine and the promise of a chai tea latte from Suzys downstairs helped a lot.

After she was finished we got her tea and stopped by to see Daddy on the way home. She and Daddy had a little dance in the rain before getting back in the car. I love these two and this smile.

Tuesday Update

I began writing this last night but need to update. Today has been much more difficult. When we made it through the night and she had felt tired and some stomach sickness we thought that was all of the negative side effects she would experience. Early afternoon she began to spike a fever and became fussy and withdrawn. Over the next hour the fever continued to rise and she became more lethargic. Tylenol is working to bring down the fever and allow her to be more active and happy for about an hour or Two and then the fever begins to go up and she starts to feel more miserable. It is flu like symptoms with fever, body aches, and chills. The doctors said this does happen with this infusion sometimes and could last several days. Please pray she is able to get relief from this quickly and that she is able to get some sleep tonight. So far she is able to rest if my hand is on her but when I move she gets fussy and wakes up.

Last Weeks Adventures

Last week the older kids went to camp and Friday I drove over to pick them up. It worked out that my dear childhood friend, Rebekah, was able to ride along with me. It was a really sweet time together. We enjoyed the drive and took the route through the Gatlinburg bypass and part of the parkway. We stopped for some hiking, we sat on a rock with our feet in the mountain stream, enjoying nature and conversation.

We stopped at a diner for lunch, complete with a jukebox, and poodle skirts. We also stopped in Cherokee and had ice cream. We spent the night in Brevard so we could pick the kids up the next morning and head back home. Another sweet friend who drove the kids over to camp at the beginning of the week had an air b&b she was not using that night so she offered for us to stay there. It was a beautiful little place in Brevard and a nice time.

Our route took us near Waynesville and I decided to stop and visit my grandparents graves. This was an unexpected stop and there were unexpected emotions that came up as I sat by their graves.

What I didn’t expect was to cry. I didn’t expect to hear my grandmamas voice in my head telling me she was praying for me, God was in control of all of this, and reciting scripture verses to encourage me. I hadn’t planned to sit and pray, thanking God for the blessings of godly parents, grandparents, family, and friends who are lifting us up and praying for us daily. I am so glad I experienced all of this. Sitting there on the side of the slope looking out over those mountains praying and crying brought healing for my heart. It comforted my heart and gave me new strength to continue on this journey. I have no doubt in my mind that God has big plans for Alex’s future and we know we have made the decision that is right for her and for our family but there have certainly been moments where I have doubted or felt uncertain and discouraged. God has so faithfully given us direction, clarity, and peace in His perfect timing.

We picked up this crew from camp and the trip home was a very different kind of fun!! 😄 We also picked my niece up in Brevard so we had a car full. We heard lots of camp stories and camp songs. Rebekah and I attended the same camp with my cousins as children and there were so many sweet memories that came fo mind as we listened to these children tell all about their adventures.

I have to add one more thing to this post because I forgot to add it to the last one. While the older three were at Ridge Haven and Paul was at cousin camp last week Alex was able to attend Princess dance camp at SoZo dance academy. She loved every day of it. This girl is a dancer through and through.

She got to dress up in a different costume each day and learn a new dance to perform for the parents at the end of the day. It was a really sweet camp. They are wonderful to her. It does her heart so much good to be able to go dance and feel like a typical five year old. This studio has been a blessing to us always but it has really shone this past year in working with us as things have changed so much.

And Boone was my donut buddy and farm help for the week. He loved taking Alex to camp because he and I grabbed a donut and read and played in the car while she was in class. He was sad when camp was over!

Paul and I also got an ice cream date and Alex and Boone played sweetly through the week. for Weeks Paul and I have been trying to get a little date so he rode with me when I dropped the older kids off with their ride to camp and this gave us the perfect opportunity for a treat together.