When we left for NYC we were hopeful that Caleb’s counts were on the upswing. They weren’t as strong as we’d hoped but based on past cycles, but we were confident they were on their way up. However, whether it was NYC, attending dinner with friends the night we got back, or open house at their new school, Caleb came down with something and spiked a fever Friday evening. As I write this late Saturday evening, he is still in the hospital, but doing very well. Aside from the fever he really has had no other symptoms this time around. His appetite is still up, his cultures came back negative (so no infection), his rhinovirus swab came back negative, and he hasn’t spiked a fever again. It’s strange, but also great that he isn’t feeling too bad. He did get started on antibiotics right away, so if there was some sort of infection going on we definitely caught it early.
So, I’ll back up to open house at the boy’s new school on Thursday. We had a wonderful time walking around the school and meeting Tyler and Caleb’s new teachers. I had every intention of telling Caleb’s teacher that he wouldn’t be starting school for a while. I had that conversation with her at the beginning of our chat. As I stood in his classroom talking with her I looked around at his name on the board, and his blank art space on the wall just waiting for his creations, and his name on the birthday chart… it just all got to me. I want him to be in school so bad. He deserves this… to be there, to have fun, to be a kid! He’s been acting fine, great energy, etc, so by the end of my conversation with his teacher I said if he gets a good checkup at the doctor on Friday then maybe he can go to school on Monday. We then walked to the Kindergarten building to Tyler’s classroom and met his teacher. She literally said “Welcome to Kindergarten” when we walked in. My little mommy heart wanted to cry. Kindergarten!!! Those words definitely gave me chills as Tyler walked around finding his cubby and his seat at his table. Both of their teachers seem awesome, their classrooms are beautiful, and I feel so confident that they are going to have a great year.
On Friday morning I took Caleb to his regularly scheduled blood draw. I was thinking we’d breeze right through and be out of there in no time with good counts… not so much. His platelets dropped slightly again so they wanted to transfuse. And most shockingly, his white blood cell count and ANC were both 0!!! So, we had taken many precautions in NYC but since we returned home I let him go play at a school without his mask thinking his immune system was stronger than it was. It wasn’t… I immediately started feeling down as I realize once again how hard of a hit his bone marrow has taken. He isn’t going to school. In fact now I know we are on lockdown for the weekend and we aren’t doing anything.
So he gets his platelets and we return home. We have a normal day playing until it’s time to pick up Tyler from school. All seemed great until right before bed time when Caleb got very tired and asked to go to bed early. Uh oh! Red Flag! My kids only ask to go to bed early when they are sick. I leaned over to give Caleb one last goodnight hug in his bed and he felt warm. We grabbed the thermometer and sure enough, 100.4. So we go into hospital mode… James packs his clothes while I pack all of Caleb’s clothes and toys and they head off to the ER.
The strange thing about this time around is Caleb spiked a fever at home, then was a pretty normal temp when they got to the ER, and then spiked a fever over 100 again about an hour after they arrived. I am not sure the cause of this one and we probably won’t ever know. Hopefully the antibiotics killed off anything that might have been attacking his system. I am very thankful he isn’t feeling completely terrible like he was last time, but also bummed that he feels completely good and we are now stuck in the hospital. Super thankful for the Child Life department and the Foundation at TGH spoiling him with toys. They drop in with goodies from time to time and it really helps to brighten Caleb’s mood and pass the time.
So that is where things stand right now… we don’t know the exact cause of the fever but they wanted to observe him and hopefully start to see his counts come back up before they discharge us. I really hope that will be tomorrow but who knows. Every cycle has been different. It’s a hard thing to predict. But Caleb got lots of love tonight as Grandma and Tyler visited AND Nana came into town for a few days too!
I don’t have any regrets about the decisions we have made regarding our activities. I am tired of living this way. I just want to get back to Caleb being a kid and us doing regular activities together as a family. It’s hard, and frustrating. I want Caleb to start school. I want Tyler to be able to play with his brother. But I know deep down it could be so much worse. Our 1 year anniversary of his seizure is approaching very quickly. 1 year ago we weren’t sure if he’d make it, and in many ways he’s now thriving. I couldn’t be more grateful for that. But still, the daily grind of keeping him in a bubble is exhausting, and this has been going on for almost a year!
As we have joined different cancer groups on Facebook over this past year we have learned people have different names for the day they were diagnosed with cancer. Some call it their “cancerversary” or “D-day”. For us there are 2 important dates, August 30th when they found the tumor, and September 11th when we got the cancer diagnosis. I think I’ll refer to August 30th as his “seizure-versary” and September 11th as his “D-day” (Diagnosis Day). I want to find something special to do each year as a family. Something fun that completely takes our mind off what has happened in the past and celebrates life. I’m not sure what that will be, or that we’ll have much chance to do something “fun” this year, but we’ll see… I’m sure I’ll think of something. I know for sure I don’t want to sit around and re-live the events of that day 1 year ago.
We will let everyone know when Caleb gets to come home again. I hope it’s soon! We do hope that with each month, now that we are done with the high dose chemo, that his immune system will do a better job of recovering. There is no way to know for sure, but I do know that Caleb is strong and his little body will fight as hard as it can!!