Today was our first day back at St. Jude after our break. I had mixed emotions coming back here. The first time we came to St. Jude it was so overwhelming. We didn’t know anybody or where we were going. We were also so sad and overwhelmed to even be here. However this time was completely different. The halls were filled with familiar faces. From the person who registers us every morning, to the receptionists in the waiting rooms, to the nurses in the recovery room, they were all so happy to see us back and see how Caleb was doing. It was very nice to be in a familiar environment this time around.
Our first appointment was at 7am so our day started early and it was so cold!! The doors of my van were frozen shut and we had to pull so hard to open them. Our windshield was full of ice and we had to sit and wait for it to defrost. We are such Floridians. We were so unprepared HA HA! Caleb does not like being cold and he was not a happy camper! Luckily Grandpa and Grebbie took Tyler to school so that was one less thing to add to our already early morning.
Caleb’s first appointment of the day was Assessment/Triage. This is where they take his vitals and draw blood. We had a rough morning because Caleb isn’t used to any of this anymore. We have been out of routine for almost a month. He has been able to eat breakfast every day for almost a month. So all of this was very scary and overwhelming for him today, and on top of it he was hungry. The very first thing we had to do was get his port accessed so they could draw blood and give him his anesthesia for his tests a little later in the day. He was a little scared but stayed very still. Thankfully his port is still in perfect working order and that process went smoothly.
After Assessment/Triage we went to his Clinic appointment. This was basically just a check up to see how he has been doing and assess him. He checked out just fine and then we were on our way to Diagnostic Imaging for his MRI.
He was very scared at this point because he had to change out of his clothes into a hospital gown and he just knew something was up. He does NOT like hospital gowns for some reason. It took me about 20 minutes to change him and get him to calm down. This is hard, not only for Caleb but also for James and I. We know how scary it is for him to know that something is coming but to not fully understand the procedure that is about to happen. We always explain the best we can, and by the time he went under anesthesia James had him laughing. Daddy has a magical way of making grumpy Caleb laugh.
While Caleb was under anesthesia they performed an MRI and Lumbar Puncture. The MRI scanned his brain and spine to monitor any changes from the last scan, which I believe was when we arrived in September. The Lumbar Puncture takes a sample of spinal fluid and they test it for any cancerous cells. When we did the Lumbar Puncture in September, his spinal fluid was clean, and his MRI showed no further tumor growth. We will receive the results of these new tests within the next few days. We are very nervous and trying not to think too much about it, but it’s hard. Once you receive bad, life altering news you always sort of brace yourself for that to happen again. A battle with cancer is like a roller coaster, things could be looking up but you never know when you will get knocked down again. However we are trying to stay positive and praying for good news to come very soon.
Overall I guess it’s good to be back here. Tyler had a great day at school and was so excited to see his teacher and all his friends. And most of all I am thankful for all the wonderful, friendly, and caring people that work at St. Jude. Many of them put a smile on my face today when they asked how our time in Florida was, and I was able to tell them about Disney and Legoland and all of our adventures. It’s nice to be surrounded by people who truly care.
We are still waiting to find out exactly when and how chemo will start later this week, so more on that tomorrow!
I hope the battery charge you got from sunshine and love in Tampa will carry you through for a good while. Your boys are so resilient and positive about things. Love and prayers for all of you this week as a plan comes together.
Cancer in yourself is enough of a roller coaster. In your child it must be a million times harder. My prayers are with you. Lean on God. He is your rock and your soft landing place. He will not fail you. By the way, it is totally normal for folks in this region to start their cars and go back inside while they warm up. 10 minutes at the outside should do it. And a sturdy ice scraper can be invaluable!
Praying for you all. Know it must be so hard to stay positive and on the bright side. Thank you for sharing your journey with us. I look forward to reading about our 🦸♂️ SUPERHERO and how your days are going. Bless you ..big hugs and prayers 🙏🏼
The above comment was from me…opps