We have been very busy the last few days, but the first and most important update to report is that we are starting Chemo Cycle #5 TOMORROW!!!! This is the 5th and final cycle that we are doing here in Memphis. The rest of his treatment beyond Cycle 5 will be outpatient at home with checkups at St. Jude starting every 12 weeks from when we leave.
But before we get too excited, this still doesn’t put us being able to go home until probably mid July. It’s still hard to predict because being able to get through the different steps of each cycle always depends on Caleb’s ability to recover. His blood counts have to meet the protocol requirements to start the oral chemo, then to be admitted for his inpatient chemo, and then finally to be able to go home. They will also schedule one more MRI and one more lumbar puncture before we leave. We also have a final check in with the ENT and a couple others to be sure we are good to go before we leave, but as our doctor said today, now we can see the light at the end of the tunnel!!!
So, as I mentioned we have been pretty busy the last couple days. Caleb was mostly still on rest and recovery and really didn’t start feeling like himself until about yesterday afternoon. But Tyler has had many sports and end of the school year activities, starting with Saturday morning T-ball. I got to go and enjoy his game and just chat with the other moms and it felt so good to be “normal” for a minute!
That day turned into a mommy and Tyler day as Caleb wasn’t really up to doing anything. So I took Tyler to see the new Pokemon movie. Funny story… I always thought the stuffed animal games were a waste of money but Tyler has a special talent of being able to win something almost every time we let him play. So now I let him play because it’s just funny to see if he will win and he won something again!
Sunday we all had a rest and recovery day at home. It was much needed for all of us to get ready for the new week.
Monday was a special day at Tyler’s school. They had field day and invited the dads to come for “popsicles with pop” as kind of an early Father’s Day celebration. James had a blast watching Tyler and all his friends do the field day activities. It has definitely become clear that Tyler will miss the friends he has made here. But it has also strengthened his skill to make new friends and so I know he will do the same thing again as he starts Kindergarten in the Fall.
So that brings us to Tuesday, where we did our blood draw and then had some special people come visit Caleb at St. Jude while we were waiting for our results. They are from an organization called “Kids Kickin Cancer“. The organization was started out of the founder’s love for soccer and the concept of being part of a team. If kids feel like they are part of a team battling cancer, then the battle seems less scary. I love the idea of this! They spoiled Caleb with the most amazing package of goodies including shirts, a sweatshirt, a backpack, a water bottle, a hat, and his 2 new favorite things, a soccer ball and Nike soccer slides… but that’s not all… he also received his very own CUSTOM jersey with his name on the back, and pants and shorts to complete his soccer uniform. He immediately started playing soccer with the co-founder, Chris, and their assistant Ainsley. And let me tell you, he still has some skills ha ha! He played for at least 30 minutes until he completely tired himself out and had to take a break!
I know for sure when we go for our next inpatient stay, Caleb will go into “battle” with his special “Kids Kickin Cancer” team jersey! Not only did Caleb receive all this awesome gear, they also gave us a bag for Tyler, and when Tyler got home from school Caleb couldn’t wait to give it to him.
It was nice to sit and talk with the founders of this organization, Chris and Michelle. We talked about why they started the organization and their desire to help kids with childhood cancer. They are amazing people, and the fact is they didn’t have to do this. They don’t have a child with cancer, they are just wonderful people who want to give hope to kids like Caleb. Michelle used to volunteer at St. Jude and Chris has a love for soccer (he is a youth coach). So when they began to think about forming an organization to help kids they put their love of those 2 things together and came up with Kids Kickin Cancer! It was refreshing to meet and talk with them and we hope to see them again soon. So go to their Facebook page, or check out their website, read all about their story and give them some love:
Kids Kickin Cancer Facebook Page: https://www.facebook.com/kidskickincancer/
Kids Kickin Cancer Website: http://kidskickincancersoccerclub.com
After all of that excitement it was time to go to our clinic and get the blood work results. We got the amazing news that we are cleared to start Cycle 5 tomorrow!!!! But, Caleb’s Hgb was still low so he did have to have a blood transfusion. I was bummed about that because it makes such a long day. James stayed with Caleb for the transfusion, and Caleb took a long hard nap almost the whole time… partly because of the Benedryl and partly because of all the morning’s excitement!
So for the next 7 days Caleb will take his oral chemo every night at home. This is the first part of Cycle 5, as we have done every cycle before. It will be interesting to see if this brings his counts down a lot, as it hasn’t always in the past but each cycle is hitting him a little harder. All that matters for now is WE ARE IN THE LAST CYCLE and that in itself feels great!