I thought I would be writing tonight from a hospital room, but I am not. Caleb’s counts are still not quite where they need to be to move forward, so we are still at home. But, more on that in a minute…
We have been having fun with Grebbie and Grandpa and it’s been nice that they got to spend some time with Caleb since we didn’t go inpatient on Tuesday. We spent time outside riding scooters (I think Grandpa needs one too!) and doing a new “science experiment”.
Since we were hopeful we would be admitted today, we decided to celebrate Easter yesterday (Wednesday). I didn’t want to take a chance that the kids wouldn’t get to hunt Easter eggs together so we decided to surprise them when Tyler got home from school. When they got home they found out that the Easter bunny had come and left some surprises. Their excitement was out of control and they were so hilarious! They got to run outside and collect all their Easter Eggs. Then when they came back inside they had to hunt for their Easter baskets full of goodies. We had a great night and watching their excitement over every little thing makes me so happy.
Today (Thursday) we full expected Caleb’s numbers to be up. It seemed like we had waited long enough (as compared with past cycles), and he’s been in a really good mood the past day. We were so sure we were going to be admitted today that we packed the car with all our suitcases, pillows, blankets, and I even meal prepped for this hospital stay so I could continue to eat healthy. However, the doctor came in with a print-out of his counts and told us “not today”. The protocol (his treatment plan) has strict guidelines about how high counts have to be for each stage of treatment. Caleb’s Hgb was a little low, but according to protocol he is allowed to have transfusion support to bring that up. His ANC was also up. It has to be over 500, and it was at 880. The problem however was his platelet count. It has to be over 50 and it was only 39. According to protocol platelets have to come up on their own, without transfusion support. So, our doctor recommended a blood transfusion to bring up his Hgb, but he can not have a platelet transfusion right now.
Transfusions automatically mean long days, so I was thankful Grebbie was there to help me keep Caleb happy and entertained. I would have gone crazy without her company today. It takes at least an hour for them to screen the blood and make sure they have a match for Caleb. However today took even longer because not only were they extremely busy, but there was a mix-up with us getting checked in. So we waited almost 5 hours from the time we found out he needed a transfusion to the time we were in a room getting him hooked up to the machine. But this didn’t phase Caleb. He was having an amazing time playing with Grebbie in all the different play rooms, and one of the St. Jude volunteers even gave Caleb a brand new Lego Play set to build. He decided that he wasn’t going to follow the directions, but he was going to build his own creation out of the pieces. He did a great job! I love seeing what his mind comes up with!
By the time we got into the transfusion room we thought Caleb would fall asleep. He hadn’t napped and they give him Benadryl before the transfusion (to prevent any allergic reactions like he has had in the past). This usually knocks him out. However tonight’s transfusion was our roughest ever. Caleb started feeling really sick. His tummy hurt so bad he couldn’t even fall asleep. I told the nurse and she ordered him some Zofran. This seemed to calm him down for a little while but he eventually did get sick. He seemed to feel better for a short time, but then started feeling sick again. They then ordered Ativan for him which usually really knocks him out. Unfortunately it didn’t stop him from getting sick again, and he didn’t go to sleep. But he did eventually get really chill and start to act silly, which Ativan does to him. It was so sad to see him like that tonight. He was really struggling. But he’s so sweet and asked me to lay in bed with him when he didn’t feel well. He’s such a trooper and has been sleeping soundly since we got home so I am hoping that it was just a fluke thing and he isn’t getting sick.
Today, with the news about his counts and also the rough night we had in the transfusion room, made me realize a couple things. The truth is with each cycle it’s taking longer for Caleb’s counts to come back up. His body has taken a big hit from all of the radiation and chemo and it’s starting to show. This doesn’t mean that he’s in bad shape or not doing well. He’s doing SO well! But it is getting harder on his body and the numbers definitely show that. When we first found out about his diagnosis we came here ready to fight his cancer hard. And he has been so brave and so amazing through the entire process. I think we have had more rough days than he has! However I know I didn’t realize how long this battle would feel. I thought that it would get easier not harder. But it has definitely gotten harder the last few weeks. This delay in getting admitted of course also means our “going home” date is farther away yet again. I know it may only be by a few days but it still hurts each time that happens. We were prepared for all of this, but I don’t ever think we were *prepared* for all of this, ya know?!
Anyways, our doctor is wonderful and told us to just enjoy our Easter weekend and come back to check counts on Monday. So, now that we have celebrated Easter already yesterday, I don’t know what we’ll do on Sunday. But, I did save some fun Easter activities that we can do over the weekend. We are used to the unpredictability of our lives by now so we always knew there was a chance this would happen. We will return Monday with bags packed and being optimistic that he will be able to get admitted and get his 4th round of the high dose chemo. Until then, we will take advantage of being able to make more family memories over the weekend. Happy Easter everyone!
You and dad are doing an awesome job with your boys. You seem to make every moment matter and keep Caleb distracted from feeling yucky! I can’t imagine how hard and overwhelming all of this is for you and your family but know that we are all praying for Caleb and your family. ❤