Mady’s Journey with LCH

LIfe the past month has been very hectic since receiving Mady’s LCH Diagnosis. Its been a whirlwind of appointments and testing. 3 weeks ago they did a Pet Scan, Bone Scan, x rays, Brain MRI, and CT Scan and it was the longest week waiting for results to come back. February 10th we met with Madys team of doctors and all her results came back clean except for two isolated areas that doctors are not worried about but they want to do an Ultrasound to check her abdomen as they think she may have a small hernia. there was also a small spot on her femur they want to keep an eye on but it does appearyto be LCH.

The past week or so has been spent trying to figure out which chemo treatment is the best option. Madys Team of doctors presented both options to us and told us there thoughts and it was up to us to decide.

Option # 1was weekly chemo with prednisone which doctors didnt want Mady on die fo the side effects of the prednisone. this would be for 6 weeks straight with new testing after the 6th round of chemo.

Option # 2 was chemo 5 days a week and then 28 days for a 3 month cycle with new testing after 3 months.

Mady was determined she wanted option #1 and doctors and both Dave and I wanted option #2 which would allow her to miss less school and still live a somewhat normal life without being sick weekly for 6 weeks.

After a lot of discussion, we havw finally decided on option #2 which begins on Monday February 27th. Prior to her first chemo dose, shw is getting a port put in which will make the treatments easier.

after we complete the first round of treatment, doctors are going to teach us to administer from home for days 2-3 so we only have 2 trips a month and not 5.

I will keep everyone posted once chemo starts. i appreciate all the texts checking on us as wr begin this crazy year long journey.