We never know what life will throw at us, and we got another curve ball tonight. Caleb woke up about 12:45am crying. This is not unusual as sometimes he wakes up because he had a nightmare, or because his stomach hurts. But tonight when James went in his room to check on him he had a bloody nose. I remembered our doctor telling us that a bloody nose is a sign of low platelets. We tried to get Caleb calmed down and settled in our bed but he kept saying he could taste the blood and could feel it dripping in his nose and the back of his throat. James and I also noticed he seemed to be breathing more rapidly, which is also a sign of low platelets. It’s now about 1am and we were too scared to go back to sleep. We called St. Jude and they told us to bring him in. So at about 1:30am we arrived at St. Jude. They checked him out and drew some blood to check his counts. As expected, his counts came back very low. Hgb is only 6.1 (should be above 8, but normal is above 11). His platelets were only 14 (anything under 20 needs a transfusion, but normal range is 190-490). And his ANC is 0 of course, which means he has no ability to fight off any infection.
The thing about Caleb is you would never know that he felt sick. We had a great day at home in the apartment, and he stayed pretty active throughout the day. We played play-doh, played some games, and went outside to ride his scooter and play ball. I would have never guessed his counts were getting so low. He is always so strong and energetic. But of course once he woke up like that we knew that something was off. This is absolutely normal for what they expect to happen at this point in the cycle, but it has never happened to us in the middle of the night before.
So as I sit here writing this blog it’s now 3:20am. We are still waiting for him to get his benadryl (the avoid any allergic reactions) and then they will start the platelet transfusion, followed by the blood transfusion. This whole process easily takes 4-5 hours and we aren’t even started yet, so I’m hoping to be able to go home by 9am. Thank goodness I’m good at sleeping in these big recliner chairs now!
Well, the rest of our week leading up to this has been good. James and I were just talking today about how well Caleb has been eating this cycle and how much energy he has had. Especially because he did have a blood transfusion on Tuesday and that always helps to bring his counts up and help him feel better. But I guess you never know what’s around the next corner. We expected his counts to be low at our scheduled appointment tomorrow, but the bloody nose definitely scared us because that has never happened before. I am hoping after this round of transfusions his counts will be able to recover and stay up on their own.
As I finish typing this, it’s almost 4am and we are just getting platelets started. Caleb is sound asleep and I am going to try to get a little sleep too. On the bright side, we don’t have to come in for our appointments tomorrow because we ended up coming in in the middle of the night. I am so proud of Caleb because he stayed calm and brave even though mom and dad were asking him a million questions to see what was or wasn’t hurting him. He was a little scared that we were leaving in the middle of the night to go to the doctor, but he calmed down once he got here and got in his bed with his blanket. He’s such a trooper!
Prayers for Caleb & all of you; hang in there! This will one day just be s memory! 🙏🏻🙏🏻🙏🏻
You are all such troopers! Hang in there.
Hope all of you get some much deserved rest today and this weekend.