We have enjoyed our week at home not staying in the hospital over night, but we have still had to go back almost every day for blood draws/count checks. This definitely beats having to be inpatient at the hospital, but still makes for some long, draining days of going back and forth to the hospital. They are monitoring his counts very closely to make sure we are going to be ok to fly to St. Jude on Monday.
The first thing we did when we got home last Sunday was go swimming! We are probably in our last few weeks of good pool weather so we are enjoying every second. I have asked Caleb’s Oncologist about swimming when his counts are low, and as long as it’s our private pool there isn’t really much risk. Caleb is at the largest risk for getting sick when he is out in crowds of people. So the pool is a great way to pass the time when we are stuck at home.
Aunt Taylor came to visit on Monday and hung out with us for a while. She captured this hilarious video of Caleb. This is what we do almost every day when we are home… turn on the “Trolls” soundtrack and dance around the pool. Since Caleb was a baby he hasn’t be able to resist shaking his body to the beat of the music and the same is still true. I’m so glad Taylor captured this moment.
As I mentioned we have been at the hospital almost every day this week for anywhere from 2-5 hours, depending on if he needs any transfusions. We find various ways to pass the time. I bring snacks and toys. The hospital staff knows his favorite snacks as well. And the Child Life department takes care of us with Lego sets and other activities. They have food every Wednesday so we got Taco’s for lunch that day! We are truly spoiled, and the amazing staff at TGH makes this whole experience better.
Paige, our favorite Child Life person at TGH, brought Caleb something very special. It’s a chemo duck. The duck is made by Aflac, and it’s a duck that responds to things Caleb does to it. I am still learning all about it, but it quacks, you can tickle it, and it came with buttons (that almost look like emojis) with various emotions so Caleb can tell the duck how he feels. Of course he named his duck “Batman Duck”. The coolest thing about the duck is it comes with a “port” that you can attach to it and give him his medicine. Caleb thinks this is the coolest part and we have spent hours playing doctor with this duck putting the port in, giving him his medicine, and then de-accessing him. One day I went to take the duck’s port out and Caleb said “wait, you didn’t flush it first!” (which is what the doctors have to do before they take his port out). Sorry Caleb I didn’t know I wasn’t doing it right HA HA! He knows so much about what the doctors do so that was pretty funny. The duck also has an app, and connects to Caleb’s iPad through Bluetooth. When you are in the app the duck responds to things you do like feeding it, giving it a bath, and giving it medicine. All around it’s a very cool thing that Aflac came up with and I am glad Caleb has had so much fun playing with it.
The nicest thing about being home is having our “village” back together. I don’t know what we would do without family nearby and friends popping over for visits and to help out with the kids. I didn’t realize how much I missed that being in Memphis and how alone we were unless family happened to be in town. I am so grateful that the boys’ Aunt Myra had some time off work before she starts her new job so she has been able to help out with the kids. The other day she watched Caleb so I could run some errands (alone, in peace, ahhhh!!!!) and today she watched Tyler. Tyler didn’t have any school today, I had to take Caleb to the hospital, and James had to work, so Tyler would have been very bored at the hospital or at home if it wasn’t for Aunt Myra. They had a really fun morning and then Caleb came home and wanted to play with Aunt Myra too. I was able to get some household chores done while she entertained them. The best part was the boys were so tired they begged to go to bed at 7:30 tonight. They never go to bed that early!!!
When it comes to the holidays this year, we are definitely making up for lost time. We did the best we could in Memphis last year, but there is nothing like finally being in our house in our new neighborhood as we go into the holiday season. The boys LOVE Halloween, and so do I, so we bought some fun stuff for the yard. I didn’t realize how excited the boys would be to decorate, but they totally go into it. It’s so exciting to be making memories in our new house finally, and I can’t wait for Thanksgiving and Christmas too. We had a great time last year, and I have great memories of Halloween last year at St. Jude, and Christmas in the Air BnB we rented, but there is just nothing like being HOME.
We ended the long week with a family swim in the pool. It felt good to all be together and relax. There is no better way to end the week.
Next week is going to be a little crazy. We have to go back to St. Jude for Caleb’s MRI, Lumbar Puncture, and other regular checkups. We have to go every 12 weeks for the next few years, but this is our first time going back since we moved home. I have mixed emotions about going back. It feels like we just left and I honestly miss St. Jude. I miss the people and just the vibe of the place. I miss some of our favorite restaurants. Strange because I NEVER thought I would miss Memphis but there are some things I am homesick for from there. Life is strange like that I guess ha ha! But at the same time I am also extremely nervous for the results of the MRI. I don’t think those nerves will ever fade when it’s time for scans. Life can change in a second. We already know that. We had already had it happen to us and so many others around us. I don’t take a single day for granted. This Tuesday is the big day, and results will be on Wednesday so please pray for us next week. Pray that all his scans will be clear and we can continue on with treatment as planned. We will update everyone next week from Memphis!!
Keeping you and your family in my prayers daily
He looks so healthy and happy now. Prayers indeed for tests at St. Jude. Love to all.
So great to see the wonderful family pics from your home. Prayers for you and your family for great test results. Sending love to all. You got this Caleb!!!!!!!!!!!!!!
Prayers for a great trip & more importantly, great scan & test results!!