We got some good news last week. I took Kallan to the Cardiologist and there is still no change in the function of her heart or the size of the tumors. We wish the tumors would shrink, and they may once she starts her new medication. As long as they stay the same and do not grow she can go her whole life with no heart problems, so we are happy and celebrating some much needed good news.
Kallan starts her new medication on Monday. It has been a long and slightly difficult process getting the medication. First we had to work out the cost and the great news is that Novartis provides help to those starting the medication that are not on government funded healthcare. We originally thought it was going to be costing us over $1,600 a month, but now it will just be $50 a month. That is huge! We are very relieved, although Ben reminds me that even if it costs 100,000.00 a month he would make it work or break into the pharmacy
All the moms I talk to who's children are on the drug say great things about it, thus we are optimistic that it will be the miracle drug for us as well. Our biggest concern is that it is suppresses the immune system which could cause Kallan to be susceptible to getting sick. This worries us because and know that she is more susceptible to having seizures when she is sick. Basically, I will be treating everyone like they are a giant germ. I will go back to greeting Kensley with a hug and hand sanitizers when I pick her up at school just like I did after Kallan's first seizure. The miracle, however, is that this drug will shrink Kallan's SEGA, tumor, so it seems like a small price to pay. While only time will tell the outcome, we are very blessed and optimistic about Kallan's bright future.
Please pray that the medication works and it shrinks her SEGA and that the side effects are minimal. Thank you!!!
