Rapamune update

So Will has been taking the Rapamune for about 6 weeks now. The first week was a nightmare! Karma has given me a picky child meaning that getting this medicine down him is impossible! It has to be given in water or OJ, not anything else (according to the package insert and the drug company). I first attempted in water, because he likes water. I tried it first and it was terrible! I knew there was no way he was going to take it. And of course, he didn't. There was a lot of begging, crying, and arguing, and I decided day 1 was a failure. The next few days didn't go much better. I brought home some OJ, but of course he said he didn't like OJ so he wasn't going to do that. I tried to explain that this was something that he just had to do, but have you ever tried to reason with a 4 year old? A very stubborn, smarter than he should be 4 year old? It is exhausting!

So I made a post on the Cincinnati Facebook page looking for guidance. Water, OJ, and some even said that gave it straight out of the bottle with no dilution. (The medicine is about 3% ethanol, so undiluted is horrible.) I finally resorted to putting it in his chocolate milk. The drug company is cringing as I type that! That told me over and over again that water and OJ were the only ways, anything else was off-label. Well guess what, the reason we are using it is off-label! So I'm going to do my own thing to get it in him. I even explored the options of tablets, but I don't think he can understand the concept of swallowing a pill. (We've talked about it and shown him, but he isn't willing.) Dr. Snyder said consistency is all that matters, so we do it the same way each day. It is working. He knows it is in there, but he also knows that it is helping, so he can't argue too much.

So I just said it was helping - that's right, it is helping so much! And just in a matter of weeks! The hard bulge on his calf is soft, he doesn't limp, no waking up crying that his leg hurts, and less bleeding in the bathroom. I want to shout from the rooftops how amazing this has been! We didn't think the results would be so fast or so obvious, so we are very pleased!

We haven't found the perfect dose for him yet, so he goes every 2 weeks to have blood levels drawn. He is so brave! He cries when they draw blood (but I want to cry when I have blood drawn too), and then he hops up, grabs a sticker, and continues playing with his nurse friends. His nurses are amazing! They all remember him (and Whiskers) and are just truly special people.

I'm typing this as I am waiting for Will to get out of his MRI. With the kidney ultrasound done a few weeks ago, they found a spot on his bladder. Fingers crossed that it is just the malformation pressing on the bladder, but it had to be checked out. I won't know the results until next week.