I’m so overdue for an update and this is my 3rd attempt to sit down and write this, so if no kids come interrupt me or I don’t fall asleep writing again, everyone will have an update today ha ha! So much has gone on this past week and a half or so, starting with Halloween activities. The timing of Caleb’s current chemo cycle has been both a blessing and a curse. We were able to participate in activities last week that he probably wouldn’t have been able to be a part of if we had started this cycle when we were supposed to a couple weeks ago. But it’s also frustrating that his bone marrow isn’t recovering faster. His body has been through so much and it was very difficult on James and I emotionally to start this 4th round of chemo and know that his counts will drop again. And as I mentioned in the last blog post, that nothing we do comes without consequences, and we ended up with a hospital visit over the weekend. Letting our kid be a kid took it’s toll and he spiked a fever Saturday afternoon. It’s heart breaking on so many levels. But first, the good part of last week…
We wanted to get in extra trick-or-treating so last Saturday we went to Downtown Tampa to trick-or-treat on the Riverwalk. The kids got a ton of candy and we got to spend time with friends. It was a hot and humid Florida day, but we all had a great time and the kids discovered Pixie Sticks! ha ha!!!
We went to the hospital last Monday for another count check to hopefully get cleared for this cycle of chemo. He did just barely make all the parameters. We were wishing his counts were higher, but they were high enough for St. Jude to ship his chemo and for us to get started on cycle 4 of our at home chemo.
Caleb has been wanting to go to school, especially since there were so many activities going on this week, so since his counts were up he went to school. I was nervous dropping him off because he has hardly been there the past month, but he saw his teacher and went right in with her. When I picked him up he was beaming and talking all about his day. I love to see him happy and I’m so glad he loves school.
He was able to attend school most of the week including his “barn party” which I got to go in and be a part of. The pre-k 4 classes had a huge celebration with so many fun stations including pumpkin painting, cookie decorating, butter churning, pumpkin bowling, face painting, etc. The kids had a wonderful time and I loved every minute of being able to be there with Caleb. The party wore him out though, and when it was all over he ended up coming home with me. I could see him getting more tired as we got toward to end of the celebration. It was a realization that even though it seems like he has good energy, we do rest a lot on and off during the day when we are at home together. When he tries to be on the go non-stop I can tell he gets a little drained. I can’t wait to be done with chemo!!! But the positive part of the experience was we got to make memories together and I loved every second!
The next day, Halloween, both kids went to school again, and Caleb actually made it through the whole day! I got to be a part of Tyler’s Fall celebrations in his Kindergarten class. Once again I enjoyed making great memories with Tyler and watching him interact with his friends. They decorated cupcakes and made several crafts. It was a fun morning and I will always remember how fun these early school years are for them.
That night we got to trick-or-treat in our neighborhood! For the first time since we have had kids we got to walk out our front door and trick-or-treat in our own neighborhood and it was so much fun! All of the neighborhood kids had great costumes and we enjoyed looking at everyone’s decorations as we walked house to house. We even discovered that one of Tyler’s best friends from class lives in our neighborhood practically across the street from us. We couldn’t believe it! The boys’ Aunt Myra and Uncle Don also came over to enjoy the night with us. It was all around just a wonderful time!
And then… chemo cycle 4 started. We had to start on Halloween night (Thursday) because St. Jude’s protocol only allows so many days to pass from starting the previous cycle and we had already pushed the time limit. The bottom line was we couldn’t wait any longer. So, Halloween night we gave Caleb his chemo. I had already noticed him tiring out easily a few days prior, and he got worn out pretty quick Halloween night too. But once he got the chemo that was it. His energy was gone. He woke up Friday morning in his normal “loopy” state, which is sometimes amusing but also so hard to deal with. He said his tummy hurt and just overall seemed out of it, so, he did not get to go to school on Friday. I kept him home and we rested quite a bit throughout the day. We took his little scooter for one round around the block and he didn’t even make it all the way back before he wanted me to carry him. So, I have been bracing myself for our next unplanned hospital visit.
Friday night we decided to give him his chemo before he went to bed, as he happened to have an empty stomach (which is required) since he had stayed up a little later. Then he asked for a few more minutes on his iPad so we said ok, since it wasn’t a school night. Well, big mistake! His “loopy” state kicked in. He got silly, ancy, got the hiccups and couldn’t sleep. After several attempts of laying down and trying to sleep he got frustrated. We let him stay up and play a bit and finally about 1am we all passed out. I absolutely hate the side effects of this chemo. They aren’t permanent but they make Caleb’s personality completely different and he can be hard to deal with. This picture is about midnight Friday evening and Caleb is just having a great time playing while James and I were so ready for him to go to bed!
Saturday morning started off just fine. Caleb rode his scooter a little bit and then got tired, which is normal, but then I could really tell he wasn’t feeling well. He felt warm, but was very cold and shivering. This is usually a sign of fever for him. James and I let him nap while we monitored him to see if he should go to the hospital. After about a 3 hour nap he still had a 101 temp so it was time to go to the ER. Of course, great timing, because James and I had plans to go out with friends Saturday night. No fun for us! A Hospital visit instead! In the ER they drew blood, did a nose swab for viruses, and gave him a dose of antibiotics. His counts were still ok, so they were about to let him go home when his fever spiked to 103! They gave him some Tylenol and said if we can control the fever they won’t admit us, but if the Tylenol doesn’t bring it down then we would have to be admitted. Luckily the Tylenol brought the fever down and we were able to go home.
Even after all of that we still had to give him chemo that night, which for us is just emotionally hard. Once again he’s already not feeling his best but we have to knock him down again. It’s just hard, and I feel so bad when he cries when he has to drink the chemo. But, the good news is after one more dose of Tylenol he hasn’t had another fever. It has stayed down on it’s own, so we’ll just chock it up to another “mystery fever” and move on. We may never really know, but as long as he’s ok now I guess all is good.
I am writing this on Monday so we are on night 5 out of 7 for this round of chemo. We went to the hospital this morning and his counts were still pretty strong. No transfusions needed. We go back to the hospital Thursday to check counts again. His counts may start dropping by then because that will be 1 week since we started chemo, but he’s most likely to be at his lowest point some time next week. I hope we can keep him healthy and out of the hospital, and I also hope this round he will recover a little faster so we don’t have to delay treatment again.
Those are all the updates on what has been going on, but I feel like I have to say something important because it has been something I have been thinking about a lot lately. Now more than ever I feel God’s presence in my life. His timing is not a coincidence. I feel like He is placing our family right where we need to be, and He is placing certain people in my life for a reason. We have such an amazing community of people around us. We always have, but it has grown even more since moving home and I feel so blessed to have the support that we have. It’s just strange and wonderful the way we have met certain people, made new friends, fell into a wonderful church family, and ended up with the boys in a school full of loving people. If we would have never moved to Memphis, we would have never explored private school, but yet here we are right where we need to be. If Caleb didn’t have cancer there are so many people I would have never connected with. His cancer has forced me to leave my comfort zone and stretch and grow and rely on support from people I have never met. I now realize I have a voice and can help other people the same way others have helped me and I can also share our story in order to give back to St. Jude. I just feel everything in my life coming full circle. This cancer has been a blessing and a curse for sure, but there are now so many more blessings coming out of our situation. Caleb has given me a purpose, and I wish that there was another way I could have reached this point in my life but I have accepted that this was God’s plan for us and we are right where we are meant to be at this moment. I don’t know what tomorrow holds but I thank God every night for all He has given us. This bulletin board is up at Caleb’s school and I just love it, and of course Caleb is a “scientist” as he always says he wants to be.
Well, I always like to leave a blog post off on a less serious note, so here is a cute picture of Caleb napping today. He fell asleep with 1 lone marshmallow in his snack cup that somehow didn’t get eaten before he fell asleep. Caleb loves marshmallows, so he must have been really tired! ha ha! More updates in the next few days!