Steroids, Obsession and Exhaustion (Part 1)

I didn't write a blog post yesterday because it was all too much for me and given I spent the night resting at home with Abby, I just wanted to focus on us.

Yesterday was a hard day. Ollie is on a super high level of steroids as part of his chemotherapy regime. As you've seen from the past few days' posts, they've been causing some aggression in him. Tuesday it hit it's peak. 

Since Ollie had hardly slept for three days and he was exhausted, aggressive and anxious, he had an outburst when his super kind doctors came to talk to us about next steps. We began talking about stem cells and Toronto. Despite us trying to gently explain everything to him, he completely freaked out about going to Toronto (a place he usually likes to go, but this time he intuitively knows it's not for vacation). No amount of explaining could calm him. He became so agitated that he was trying to run from the room so he got out of bed (remember he is still blind) and began trying to rip out his IV lines or grab the pole. I was forced to restrain him as the doctors tried to help and instructed the nurse to get him a sedative. He continued to fight, trying to even bite me and the doctors.

As a mother, I was heartbroken, scared and ashamed that I could not calm him. I understand that this is illogical and both the doctors and nurses later told me how well I'd handled it despite my feeling of ineptitude. 

As they got the sedative I was able to sit him on my lap and rock him and make "shhhhhhhh" sounds to bring him down a bit so that they could push the meds. While he calmed a bit, it was not enough so we finally got psychiatry involved (which I had predicted he'd need when they told us that he'd now eventually need radiation and stem cells). They came over and were able to see him in his agitated state and decided that he needed to stop taking the Atavin as in some kids it has the opposite effect causing rage versus calm. Guess as usual Oliver was atypical. His oncologists also reduced his steroids as they felt the side effect was not worth the benefits. 

One thing I'll say is our oncologists Dr. Abbott and Dr. Pinto really care. Their concern and compassion radiate out of them every moment you're in their presence. During this episode, the very pregnant Dr. Abbott tried to protect him and me, despite my concern for her and then after I'd calmed him a bit and got him back into bed, she sat in his bed right beside him rubbing his head and back, helping me sooth him. Dr. Pinto worked with the nurse to get the meds into him, then helped me to make sure I was okay, rubbing my back and arm. How could I not love these brilliant, empathetic, brave women who are working so hard to cure my son and to help me survive it all too?! What a difficult job they have, but it is one that they clearly consider a calling and they are definitely gifts from God in all of this.

Oliver's obsessive behavior continued throughout the day as he insisted he call Mario and would howl with rage anytime he was denied. Mario finally came over for lunch and fed him, then went back to work where he let Oliver do a video chat with him while he fixed servers and then came back to the hospital to switch with me at end of day as I desperately needed a break and to see Abby to be reminded that he will be well and our loveable child again one day soon. 

Abby and I had dinner with dear friends Maria, Casey and Sofia when I picked her up there and they insisted I come in. It was nice to catch up and be social for a bit. Then Abby and I headed home to snuggle, eat ketchup chips and sleep.