Port placement procedure…

Radicava is an infused medication. It is given on a specific cycle, as follows. Ten, 1-hour long infusions in a 14-day period, followed by 14 days off, repeating over and over and over and over and over…forever… this is one of the 2 FDA approved drugs for ALS. Studies from Japan show that this drug *can* slow progression by 30%...Rich started Radicava in April of 2019. This means that from April to August he spent 50+ days with an IV in his arm…for these 4 months a nurse would come to our home 3-5 times in our 14 day infusion period to put in new IVs… each time was a struggle…Rich’s arms looked so sore, so many pokes, so many bruises. This time of my life was very difficult. I was in my fourth trimester, meaning I was healing from just having given birth to our precious daughter. Never did I EVER imagine that my time on maternity leave (on top of caring for a newborn daughter and almost-two-year-old son in a new house) would be spent letting nurses in and out of our house and infusing my husband day after day with IV medications. FINALLY in August, he was able to get a port placed. Following his port placement I was trained to access his port, and from then on we were independent of the nurse visits, but not of the IV pole and infusions. 

Funny story time, though you might not find it funny...

As I mentioned in a previous post, a month after Rich was diagnosed, my mom was diagnosed with stage IV cancer. 

My mom was in and out of the hospital for a variety of procedures related to the cancer. I tell my parents the date for Rich’s port placement—this is the funny part—my mom says, “I have an appointment on the same day, in the same place, at the same time!” So, in my little crazy insane world, that day, we were in the waiting room sitting across from my mother in the waiting room at MGH, My dad by my mother’s side, and me by Rich’s. The majority of the people I love most in the world, sitting in one room—two of which were about to have procedures in one of the top hospitals in the country. Thank goodness for the help and support of our family at home with our two children, who at this point were four months old and 2 years old. My mom’s procedure was quite quick, and they were professionals at this point of her treatment, so they were in and out, back home so my mom could rest. I sat for a few hours waiting for Rich, my breast pump and cooler by my side.  Following the procedure, when Rich was still a little loopy from his medications, he made his first announcement to social media that he has ALS, hospital Johnny and all! 

Please see the images above for our exciting upcoming fundraising events! If you can not attend, please share with friends and family. Thank you again for all of your love and support.

Living one day at a time,

Leah