We took our 2nd trip to Mayo on April 20-21. This was our randomization visit and the girls were given their study medication. Being the curious and OCD person that I am, I am trying to think of ways I can figure out which medication the girls have. There are three options: placebo, low dose or high dose. There's a 66% chance that the girls received the actual medication. So far the dosage leaves me confused and they are both the same red color...but, hopefully a bit of seizure control will come soon and help me out! We are hopeful they are using the girls for a true controlled study by giving one full-dose and one half-dose. We shall see... Praying we will see some good results from this medication. We travel back to Mayo again this week. It's going to be a busy summer making multiple trips up north. The girls are enjoying staying in a hotel and "going out to eating." If Lauren gets her way, we will eat at Applebees every time we go. She was adamant and hangry last time so she won. I have already told her she isn't winning next time. She's not convinced and has already informed me that Dad wants to go to Applebees. (She fibs...) Nothing against Applebees, it's just nice to broaden our horizons a bit! Of course it's better than Lindsey's choice -- Taco Bell.
In other news that unless you live under a rock you have heard of by now, is that our Iowa Legislature passed a medical cannabidiol bill in the wee hours Saturday morning, April 22. I headed to the Capitol after returning from Mayo expecting a vote sometime Friday night. I should have known better... I was accompanied by a couple of good friends I have made over the last couple of years and we ended up entertaining ourselves in the House gallery until 5 am Saturday when we had to leave to get home to get ready for a busy morning with fundraising walks. I fell asleep for about an hour and ended up missing the House debate and vote on the bill shortly after 6 am. I was able to watch the Senate vote on my computer and I don't think the reality of it all hit me until later in the day after I had time to process it all and take a good nap. The bill that passed is not what we had advocated and hoped for but, it is definitely another step forward for Iowa. We will have growing, manufacturing and dispensing in Iowa so patients will not have to bring in medicine from out of state. There are 15 conditions that are covered under the current bill. Many well-deserving patients were left off the list of conditions but, a medical advisory board will be set up which will be able to add medical conditions in the future. The THC limit is very low and unfortunately will not allow for many patients who have a qualifying condition to find relief from their suffering. This is the part of the bill that I find most disappointing. But again, the medical advisory board can increase THC limits in the future. Unfortunately, the legislature added a provision that any changes in THC have to be approved by them. I guess they don't trust the experts... Anyway, it's off to the Governor's desk for his signature should he choose to do so.
As I take off my medical cannabis advocacy hat, it leaves me relieved and thankful to finally have this chapter finished. It has been a very long four years. But, I am thankful for the experience. I have learned a lot about our state government and how it works....the good, the bad and the ugly. I have learned that there are a lot of amazing men and women doing great work for our state and who honestly work for their constituents. I have learned that minds can be changed by gentle persistence, education and the sharing of real life experiences. What has been accomplished in the last four years is nothing short of amazing and there's a lot of people who made it happen. What I am most thankful for is the friendships that I have made over the last four years. I have met some wonderful people who I know will remain life-long friends. I have found families who are walking in the same shoes fighting the beast that is Dravet Syndrome. I know that we will never walk this journey alone and that brings me peace. My girls have gained a life-long friend, Margaret, who is their first real friend that they are able to talk to every day, spend time with and have a genuine friendship that only they can understand. This is a huge blessing for our family. I have friends who I can talk to when I am having a really crappy day and they can truly understand exactly what I am going through. I have met friends who are dealing with serious health conditions and they have earned my utmost respect as they fought to change laws to find a way to improve their quality of life. They amaze and inspire me and I am thankful our paths in life crossed. This has been a long and exhausting journey but, I am so glad to have traveled it.
In 2015 I made a promise to my mother while she was in great pain, dying a horrible death in the nursing home. This was in year two of our journey to bring medical cannabis to Iowa and Mom told me she wished she had the ability to try it to relieve her pain and suffering. She told me she knew she would be gone before it became a reality and told me to keep on fighting so that patients with ALS would have this treatment option in the future. She also wanted nothing more than for her precious granddaughters to have a better quality of life without so many seizures. So I promised her I would fight and I can finally say, we are on the right track to do so. Hopefully within the next couple of years we will have a comprehensive medical cannabis program and patients will have access to whole-plant medication to relieve their suffering. When I was exhausted, angry and ready to quit, I thought of her. She never quit. Ever. She fought the battle until the end. I am sure she is smiling down from Heaven and I hope I have made her proud. I miss her so much.
So as we end one journey and start another, I am reminded that life is precious. You never know when the diagnosis will come, when someone is taken from you in the blink of an eye, when life-changing circumstances leave you helpless. Say I love you to those you love, lend a hand and expect nothing in return, be the positive influence in a world that is hurting and never, ever give up hope.
"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." ~ Margaret Mead
