Today we went to St. Jude for blood work to find out where we stand with Caleb’s blood counts. These counts are an indicator of how easily he might get sick or catch an infection, because as his counts drop his immune system is unable to fight things off. However the last few days we weren’t really sure where he stood so we have been keeping Caleb home and not going anywhere in public. We sanitize and vacuum the apartment every single night. We wash our hands obsessively. We basically do anything we can to make sure he doesn’t get sick.
The tough part though, is finding a balance between keeping Tyler and Caleb entertained when we can’t really go out and do anything as a whole family. We don’t want to punish Tyler by keeping him cooped up at home all the time, but we also have to keep Caleb safe and healthy. Thank goodness Grandma is still in town right now. Tyler has been out of school on Christmas break, so Grandma has been a huge help in giving Tyler a fun Christmas Vacation!
Yesterday we stayed home as a family and played games inside, and played ball and rode scooters outside. I even taught Tyler a few beginner volleyball skills and he loved it!!! Grandma has also been cooking us delicious home made meals and last night she made meatloaf! Grandma also helped us set up “chore charts” so the boys have something to work for each day. We had something like this at home before, and it was successful, so it was time to get something going in Memphis. The boys just love earning their stickers for each category when they work hard!
Yesterday was a fun day, but today we had appointments at St. Jude, so Grandma took Tyler for the day. Tyler has also been enjoying sleepovers at Grandma’s hotel! He loves the pancake maker and has pancakes for breakfast every morning. Then Grandma and Tyler went and explored a little of Memphis by going downtown to the Fire Museum. Tyler LOVED IT! There is a mock fire truck you can drive and a lot of cool interactive exhibits to teach kids about fire safety. We definitely need to take Caleb back when his immune system is up for it. But, since Caleb couldn’t go today Tyler brought him some goodies home from the museum. He is so sweet for always thinking about his brother! And the Firemen there were so sweet because when they found out Tyler had a brother at St. Jude they gave him two helmets to take home and 2 firemen patches. All in all it was a good day and I am so thankful that Tyler got to have fun and not be stuck going to appointments with us at St. Jude.
So that now brings me back to Caleb’s appointments today. They drew his blood and then about an hour and a half later we got the results. They gather a lot of info from each blood draw but there are 3 main things we are watching: Hemoglobin levels (Hgb), platelet count, and something called the Absolute Neutrophil Count (ANC). Here is how his results came back:
-Hgb: 8.2 (normal range is 11.5-14.0)
-Platelet Count: 76 (normal range is 190-490)
-ANC: 0 (normal range is 1500-8500)
So, as you can see the Chemo has caused all of these counts to be in the low range. This is absolutely expected and normal for what he is going through. Here is what each thing means for Caleb:
-Hgb: We were told anything under 8.0 will require a blood transfusion. Caleb is at an 8.2 and counts are expected to keep dropping. We expect he will need a transfusion at his appointment on Friday.
-Platelet Count: Caleb was at a 76 and we were told anything under 20 requires a platelet transfusion.
-ANC: He is at 0 so he can’t really go down any further from here. When we checked into our inpatient stay the day after Christmas he was in the 600’s, so that number definitely dropped fast. The ANC count indicates how much his body would be able to fight off an infection, and so right now it’s very likely he could catch something. If he comes down with a fever we have to bring him into St. Jude immediately and we would more than likely be admitted again for him to stay in the hospital until counts recover. He would receive antibiotics to help his body fight off anything. BUT we are trying our hardest not to let this happen. With keeping him only at home, or wearing a mask when he goes to St. Jude, he stands a much better chance of not catching anything.
The process is not fun, but it’s not forever. His counts will recover over the next 2 weeks… and then we will start his 2nd cycle of chemo which is everything we have just done all over again.
The last appointment of our day today was one more dose of chemo called Vincristine. It was actually a small dose with a quick drip so it only took about 5 minutes to give him. Caleb sat on James’ lap and watched TV and then it was over. They just hook up to his “buddy” (AKA his port) and Caleb doesn’t even know the chemo dose is going in. That was the last dose of chemo for this cycle.
Caleb is still doing well despite everything, but as I mentioned his counts will continue to drop over the next week. He will hopefully recover the following week after that. They will not start the next Chemo cycle until his counts have recovered, which will likely be in about 2 weeks. But he’s so strong and still came home and ate dinner and played. He is getting a little bit pickier about eating, but as long as he keeps eating and stays hydrated we will be good. I am still nervous every day that things are going to get really bad. I think we are going to escape this first cycle of chemo relatively well, but we have been told it gets harder for them to recover each cycle and we still have 4 more cycles to go. But, only time will tell, because so far our little super hero is surprising all his doctors (and us!) with how awesome he’s doing!