I’ve been working on a really great post that I hope to have finished in the next few days, but in the meantime, I want to take a second to update you on Maddilyn’s second round of Rituximab that she finished this past Wednesday.
We signed in on Monday morning to receive her second infusion of Rituximab, High dose steroids, and IVIG. As always, explaining to our five year old WHY she had to go to the hospital yet again, was just as difficult as it was the first time around. This time, she was a bit more prepared, and knew exactly what toys she had wanted to bring.
I was so relieved when everything went as expected. Maddi tolerated the infusion of Rituximab very well. She was able to complete her infusion in 4 hours, rather than the 12+ it took the first time. She had zero infusion reactions, and was able to tolerate IVIG on Tuesday evening, followed by steroids on Wednesday, then we were discharged. Because Maddi did so well, we were informed that in 12 weeks she could complete her maintenance dose of Rituximab in the infusion room, and would not need to be hospitalized! Yay! We left with a new steroid taper that would have her off of steroids in 25 days and a follow-up with Neurology in a week.
When we got home that afternoon, she complained of stomach pain. I figured it had something to do with the Rituximab making her constipated (TMI- she got constipated the first go around,) so I encouraged her to use the bathroom, and she denied any further pain that afternoon. We decided to celebrate being hospital free with dinner out as a family, seeing as it had been months since the last time we ate in a restaurant (that wasn’t the hospital.) During dinner, Maddi wasn’t very hungry, and declined to finish her meal. The steroids and the risperdal cause her to be very hungry all the time, so this was indication to me that something wasn’t right. She then started to complain of serious stomach pain, to the point of tears. We left the restaurant very fast, and called the after hour peds, who then suggested because of her history, that we should go straight to the ER. So we dropped Jaxon off with grandma, apologizing to the poor baby to be leaving him yet again, for another night, and headed off to the ER, not knowing if something was seriously wrong and would this end up in a hospital stay.
Honestly, at this point, I rule nothing out. Sometimes I feel almost obsessive. I worry about every sneeze, sniffle, groan, etc. It’s my new state of living. When you have a critically ill kid, things can turn in the blink of an eye. I live in constant fear of relapse. When will that change? I don’t know. I try to remind myself that I have no control over this situation, and try to focus on the good things. She’s getting better every single day.
The Rituximab has two pages worth of side effects, and I wanted someone to lay eyes on her and say she’s fine so I could sleep that night. As we were pulling into the ER, Maddi starts to vomit. She said her pain was gone almost immediately. The ER staff ruled out anything serious, and said her bowels and abdomen sounded and felt great. We sat on a stretcher for two hours after a dose of Maalox, then they sent us home.
So far, she’s doing well. No side effects. She seems to have more energy. She is smiling more. Doing things she used to do, more.
I’m very happy so far with the treatment plan and the team of doctors working on Maddi’s case. I have great faith that she will be returned to her former self; with her personality completely intact.