“Mom, what’s Diabetes Insipidus?”

Yesterday we went to the hospital to get Trip’s blood counts and for an eye exam. His counts were great, which is good news but typical on Methotrexate. They are unlikely to go down on Methotrexate compared to the rest of the chemotherapy treatments he’s had. He did great on his eye exam and can even see a little better than I can with my contacts (which isn’t hard). As soon as the doctor entered the room, she exclaimed, “Oh his eye looks even better than the last time!” What a relief!! News we’ve been hoping to hear for so long. The bulging in his eyes has decreased to where he finally is getting a little crease in his right eyelid. The small victories mean so much these days since we went so long without any good news. We don’t have to go back to her until after the next MRI… big change since we were going every week not long ago.

This morning, Trip popped up from watching Tom and Jerry and out of the blue asked, “Mom, what’s Diabetes Insipidus?” We don’t shy away from talking about his disease in front of him, but I was surprised he remembered that specifically and while doing nothing. I tried to explain it so a 4 year old could understand it and told him his body doesn’t know how to hold onto his peepee like it should and it’s what makes him thirsty when his medicine wears off. He sat there for a few seconds to let it absorb and said, “You know what I think it is? Diarrhea.” (He said this because when his medicine isn’t onboard and he consumes large amounts of fluid, he sometimes ends up with diarrhea. He HATES getting diarrhea. It has the potential to ruin his day but typically stops once his shot is given.) I told him diarrhea is definitely a symptom of DI and that he’s one smart kid to even ask. I asked him if what I told him made sense to him and if he had any questions. He simply said, “No, Mom. I’ve got it now.”

Lesson of the day: Never underestimate how smart my kid is and how well he can take honesty even when I perceive it as bad news.

Trip had a very hard time last year when he was first diagnosed with needles, blood, doctors, getting accessed for treatment, etc. He would threaten to break the hospital down with his “magic” sword. It got to the point to where his doctors suggested he go to play therapy. It’s just like therapy for adults but the kids use toys to express how they are feeling. He goes once a week (as long as there aren’t any other more important appointments) and works for 30 minutes. He has missed the last two weeks because of treatment and another appointment. I can see a decline in his attitude when he doesn’t get to go. He has done play that indicates a feeling loss of control, which is totally understandable. Recently he has started doing death play. Colson thinks it reflects what we do at home – pretending to be injured and he saves us or vice versa, but his therapist thinks this is a little more serious than just being the hero. She said what he is doing in there is wonderful and the type of work he needs. I hope she is right and he does feel relief from the sessions. He seems to enjoy them, but a cardinal rule is that I ask him no questions about his session, not even if he had fun. I have no idea how he made the leap from his disease and what he is going through to death. I thought that was a very adult subject that wouldn’t occur to him, but once again he surprises me with his perception.

We go in Tuesday for more blood work and a follow up with the doctor. They want to admit him for treatment again on Thursday and hopefully out by Sunday. These hospital visits sure are going to make the weeks go by fast. We are looking forward to a weekend of doing nothing and everything he wants at the same time.