As I write this today we are on our way to Memphis for Caleb’s post treatment scans. Post Treatment! Wow! Those are big words and mean we have made it through so much. As I reflect on life the last few weeks I thought I would give everyone an update.
Honestly, we’ve just been living life and it’s been so great! With the exception of a few interview/public speaking type things our day to day has been pretty normal. I would actually say it’s been the closest to “normal” that we have been since we returned home.
Some of the biggest news is that we have let Caleb return to school. He has been so excited to go in every day and see his friends. It’s amazing that in such a short time he is already asking so many questions about what letter an object starts with, or what certain words are if he sees them somewhere. My hopes have been that he would catch up to his classmates at some point, and I can already see the wheels turning as he absorbs all the information being thrown at him. He can pretty much write his name (still using some capital letters in there) and he is SO proud of this accomplishment. There have been some fun activities since he’s been back to school too, like a Mardi Gras Celebration and Dr. Suess’ Birthday. They do so many fun things at school and I am glad I was able to be a part of their “Cat In The Hat” snack activity!
In home life, the boys continue to LOVE playing outside. The second we get home they beg to go outside. We are fortunate to have some of their best school friends living right across the street so they coordinate play dates at school and then inform us parents that they made plans to ride bikes together after school HA HA! I love that they love the outdoors and we spend many hours outside after school. We also were blessed to celebrate my Grandma’s 91st birthday!! The boys are so lucky to have their Mimi and I’m so lucky to still have my grandma. We were able to go out to dinner and the boys got to practice a little of their golf game that night as well.
We also got to go to The Strawberry Festival! To me this isn’t just any carnival. I have been going to The Strawberry Festival since I was little. I have a lot of wonderful memories there and now the boys are making wonderful memories too. I have been taking them since they were babies and I even distinctly remember being very pregnant with Caleb and sitting on a bench eating Strawberry Shortcake. I love going, watching the kids ride, and eating all the unhealthy food! We even snuck in a concert this year. All around we had a great day!
As far as St. Jude goes, for the second time I ran the Gasparilla Distance Classic as a St. Jude Hero. This means that I did some fundraising for St. Jude leading up to the race. It’s always amazing when my passion for St. Jude and my passion for running can come together and raise money for the kids. I will never stop trying to help St. Jude for all they have done for Caleb. It was a beautiful race weekend with breezy cool temperatures. I finished the Michelob Ultra Challenge which means I ran 30.4 miles in 2 days. I can’t wait to continue fundraising for our walk/run coming up September 19th… more on that in a future post!
On behalf of St. Jude we also spoke at a fundraiser event for “Ride For A Reason”. This is an annual cycling event hosted by Lifetime Fitness. Unfortunately we aren’t able to make it to the actual event this year, but I loved meeting this group of people and sharing our experience with St. Jude. I am touched by the generosity of people who have never even met Caleb (shoutout to the Lifetime Fitness at International Mall in Tampa!), and their support for St. Jude. I really hope we can attend Ride For A Reason next year!
We have also become close with a couple other pediatric cancer foundations in Tampa, and one of them did an interview with our whole family. The Ryan Callahan Foundation interviewed all 4 of us about what it was like to go through everything with Caleb, and how it affected our family as a whole. We will be part of a short video, along with some other local cancer families, that is featured at their upcoming event. We also continue to see some of the pictures that Caleb took for the Children’s Cancer Center, and I know I am biased, but man is he cute! Ha ha! Here are a few of those…
Nana came in town to help out with Tyler while we are in Memphis. We were lucky to have her in town a few days early so we could enjoy her cooking. She made Chicken Cordon Blu (one of my favorites!) and Strata (a sausage and egg breakfast dish). We have been spoiled I wish I could keep her around all the time! And of course Caleb asked to help with some of the cooking, so he and Nana worked on the Strata together.
So, you are all caught up and more updates will be coming soon as we have our appointments in Memphis. Tomorrow (Thursday) are Caleb’s “fun” appointments as we call them (physical therapy, occupational therapy, audiology, etc.) They are fun because they just play games with Caleb and he doesn’t even know he’s being evaluated. We will end tomorrow with a blood draw to check Caleb’s counts and make sure he is clear for sedation Friday morning. If his counts are too low he will likely need a transfusion, but we aren’t expecting that will be necessary since we just had a count check Monday and all was good. Monday was *hopefully* the last routine count check he will have to have. I am hopeful that on future trips to TGH they will be to get his port flushed once a month until he has it removed. So, that’s all for now, but I will leave you with one funny story from the airport today. We were checking out some of the plants inside the airport and Caleb was interested in them because they were real plants, but inside. So we get over to security and I say “look Caleb, more plants”, and he says “what, take off my pants?” And James and I burst out laughing. So 2 lessons learned… 1, Caleb will wear his heading aids next time we travel and 2, Caleb learned you do not have to remove your pants in the Security line!!!!