The last few days have been very busy! Our schedule has been all over the place, and many things have been falling into place last minute since the next move in Caleb’s treatment always depends on his blood counts.
We spent all of Saturday and the first part of Sunday having fun with Grandma and doing fun activities. She got to spend some special time with each of the boys, as they each got one night to have a sleepover with her. This always results in some good ole fashioned grandma spoiling in the form of hot chocolate and popcorn before bed, and staying up way past their bed time.
Grandma and Tyler also ventured out to Germantown to try one of the best BBQ places around, Germantown Commissary. They loved it! And Tyler may have talked Grandma into a toy or 2 (one to share with Caleb of course) on their way home.
While they were out doing this Caleb and I baked Valentine’s cookies. We only had sprinkles left from Christmas though, so it was an interesting mix of holidays. But Caleb didn’t care. He had a blast eating the frosting and the sprinkles!
Once a teacher, always a teacher. So of course Grandma also worked with Tyler on his site words, AND reading his first book. He did really well and was so proud of himself. Every time he finished reading a page he jumped on the couch and yelled “I can read! I can read!” It was very special. His confidence is soaring and Grandma helped him learn that he can do it if he concentrates and works hard!
By Sunday afternoon it was time to say goodbye (for now) to Grandma. We also had an appointment for Caleb’s blood counts to be checked. We knew that if they were not a certain number they would transfuse platelets and blood to get him where he needed to be to have his Lumbar Puncture (LP) done on Monday. We have done the LP with every set of scans as well. This tests the spinal fluid for any cancerous cells that may have spread. We are not expecting that they will find anything given his clean scans, but you never know so they always do this test as well. However if his ANC and blood/platelet counts aren’t high enough, it’s too dangerous to do the procedure and we would have to wait. His ANC went way up so that was great, but his blood and platelets were still a little low for what they would like to see. So, as with every transfusion, this means the next 5-6 hours are spent sitting in a room just waiting. But in true Caleb fashion, he marched back into the transfusion room in his Superhero cape! HA HA!
Of course since it was Sunday Tyler was with us as well. It’s not fair to make him sit around St. Jude for that long, so he and I left and then came back a little later with dinner and snacks for daddy and Caleb. Caleb slept through a lot of the transfusion, but woke up toward the end and enjoyed his McDonald’s Happy Meal. Our blood draw appointment was at 1:30pm Sunday afternoon, and James and Caleb didn’t leave St. Jude until about 9pm Sunday night. That’s how long the whole process takes. It’s definitely not the way we prefer to spend Sunday afternoon, but he was able to do the LP on Monday!
Monday was President’s Day so Tyler did not have school. To top things off, since this LP was moved from last week to this week because of counts, and we weren’t even sure until Sunday night if it was going to happen, James had to work and we didn’t really have a good plan for the day. Tyler came along with us to St. Jude and I loved watching the two of them play in all the play rooms that Caleb normally plays in alone. The tough part was Caleb couldn’t eat anything before his 1pm procedure. That’s a loooong morning when you have another kid that needs to eat regular meals. And the other tough part was Tyler couldn’t stay with us the whole time because watching Caleb fall asleep with the anesthesia would be a little much for Tyler to see. It’s definitely emotional and a little weird the first few times you see it, and Tyler gets very emotional when it involves things that he thinks are hurting Caleb. I didn’t want him to see that. So James juggled his meeting schedule, working, and keeping Tyler entertained the best he could while all of that was going on. The rest of the day was great as Caleb woke up to his favorite after anesthesia treat, Munchkins from Dunkin’ Donuts!
We ended the night making “breakfast for dinner” which is one of their favorite meals. They both helped me cook by laying out the bacon, mixing up pancake mix (their choice of color), and cracking the eggs for the scrambled eggs.
We have another blood draw tomorrow to see if we are clear to start Chemo Cycle 3. I am thrilled that we are at Cycle 3. We only have to do 5 cycles and so it feels like we are finally getting somewhere now! This last cycle actually feels like it went decently fast. We might also find out the results of the LP but I’m not sure how long it takes to get that back. Hopefully we’ll get results soon!
I’ll leave this post off with one last sweet moment of the day. The boys are very intrigued by the moon and the stars and all things space related. Tonight there was a beautiful full moon and they stared at it out the window for a while. Tyler pointed at the moon and told Caleb “that’s God’s flashlight.” I laughed for a minute, but then I realized how much I liked that idea and how comforting that felt. We are sometimes in darkness but God is guiding us with his “flashlight.” So now we call the moon “God’s Flashlight.”