We wrapped up Caleb’s 3rd day of appointments with a Psych test, Neurology, Speech, and Occupational Therapy. Another long, but fulfilling day. I watched in amazement today as Caleb answered questions and demonstrated his skills in all different areas. We are beyond grateful not only for his health, but for his abilities in all areas. His deficits could be so much worse from the treatment he has had, and he continues to amaze us every single day.
Our morning started with a BIG BREAKFAST! Caleb hasn’t been able to eat breakfast because of the anesthesia so today was the first day he could eat in the morning. We went to St. Jude and Caleb had pancakes, bacon, cheesy hash browns, cereal, and scrambled eggs. He was very happy!
His first appointment was his psychology evaluation. I was given the option to stay in the room, but decided to leave Caleb and the psychologist alone for their 1.5 hour evaluation! I felt like he could focus better if I wasn’t there. I was given a clipboard with 7 different forms to fill out about Caleb’s social and emotional well being as well as my own mental health. I grabbed a Starbucks and got to work filling out the evaluation. When Caleb’s test was over the Psychologist said he scored at a Kindergarten level in many areas. She was very impressed by him. We talked a little about school and his social life and how he’s adapting to everything. Right now we are all in a good space and it’s great to know they are there if we need anything in the future.
After psychology we met with Caleb’s Neurologist. Now that we have are 1 year past surgery with no seizures we wanted to talk to him about weening Caleb off his seizure medication, Keppra. He said he felt Caleb is at a very low risk for any further seizures, so he felt like it is safe to start decreasing the medication and see how he does. We will decrease his dose by half an mL every 10 days. His latest EEG showed no seizure activity. So we will monitor him closely but I feel confident that all will be ok. I know Caleb will be happy to have 1 less dose of medicine to drink every day!
Next was his speech therapy appointment. He likes this appointment because it basically feels like playing a game. The therapist shows him different pictures and asks him to identify objects, explain what’s going on in the picture, etc. He rocked it! I love watching him because sometimes he amazes me with all he knows. The funniest one was a picture of a lady singing. The prompt from the therapist was “She likes to sing. She is a _____.” The answer was supposed to be singer, but Caleb said “rock star!” with great enthusiasm. I try to stay quiet during these tests as to not distract him but I burst out laughing. His therapist thought this was hilarious too. If he didn’t know the answer he tried to come up with a creative one ha ha!
The final appointment of the day was Occupational Therapy. This focuses on fine motor skills, and she observed Caleb’s writing, cutting with scissors, and ability to place and remove pegs from small holes. Caleb did wonderful! He recognized all the letters in his name and could write most of them. After watching him and talking with the therapist we both agreed he has the ability to do everything, he just needs more practice mostly due to not being in school for the past year. She gave me a few more great ideas of fun games we can play at home so it doesn’t feel like learning. And of course I hope once he can be back in school full time he’ll catch right up to his classmates and be ready for Kindergarten in the Fall.
As we were waiting for one of Caleb’s appointments his doctor gave me a call. He delivered the great news that Caleb’s CSF (Cerebrospinal Fluid) was clean. There were no cancerous cells present! Although it’s always been clean, we never assume anything and always wait to hear the test results. We celebrated this last bit of awesome news. Caleb’s doctor was thrilled with the results as well.
And as if all of that didn’t make for a busy enough day, Caleb’s doctor also asked if we would be willing to participate in a new research study that just became available. James and I have not turned down one single research opportunity since this whole thing happened. We have donated Caleb’s tumor, extra blood samples etc. any time that they have asked. This new study is comparing samples of the tumor and Caleb’s blood alongside blood samples from the parents. So, it is our turn to do something. Tomorrow James and I will sign the consent for the research study and give a small sample of our blood for the study. Caleb already said he’d go with us and hold our hand since we have to get a needle stick ha ha! But this is the very reason we love St. Jude so much. Research is the only way a cure will ever be found. In order to find a cure they need to understand everything they can about these tumors. So, if we can be one small part of that we are happy to contribute whatever we can.
We ended our day with a trip to “The Pyramid” (AKA Bass Pro Shop). It’s one of Caleb’s favorite places in Memphis. He loves to watch the fish, see the alligators, and climb on every 4 wheeler they have. So we took him over there to walk around for a bit. When we left it was a beautiful evening so we finally decided to drive over the huge bridge into Arkansas. I am not sure why we never did that when we lived here. We always said we should go to Arkansas just to say we’ve been to Arkansas ha ha! So, we enjoyed the beautiful scenery as we drove over the Mississippi river at Sunset.
As we leave Memphis tomorrow we couldn’t be more grateful. We don’t take Caleb’s good health for granted, and we know not everyone’s scans bring the news they hope for. But thanks to St. Jude, many do get good news, and hope for a bright future. This week we were one of the lucky ones. I’m in awe of Caleb every day and I’m so blessed to be his mom. I can’t wait to get home to Tyler tomorrow and have the whole family back together. See you in 12 weeks Memphis!