Journeys and Trials

It's been a busy few months around here...but, it's always busy around here.  We've been keeping busy with school, work, advocating, traveling to Mayo for a new clinical trial and dealing with seizures that strike too often.

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

Life is Hard

I always sit down to write and never know how to start.  I have all of these thoughts and emotions that I want to talk about but always struggle with how to put it down on "paper."  It takes me back to my school days in English class (one of my favorites by the way) when you have a creative writing story to write.  You have to come up with your lead sentence to capture your reader's attention.  It sets the tone of your story and is the make or break statement that controls your story's destiny.  I struggle with that. So here's my lead sentence...  Life is hard.

Yes, life is hard.  Some days just really suck.  Others are just peachy keen and some are just okay.  Forrest Gump's Mama was right...life is like a box of chocolates.  Yesterday was like biting into a coconut cream candy when you are anticipating a caramel.  I went to work like any other Thursday and was having a productive day.  I  had to run some errands and stopped to grab a bite of lunch around 2:15 and my phone rang.  On the other end was the school nurse.  I could hear the panic in her voice as soon as she started talking.  "Kim...I am going to give Lindsey Midazolam. She's been seizing for over 10  minutes and the Clonazepam didn't work."  I'm in Urbandale...25 minutes away from school and stood there in Hy-Vee gathering information and feeling helpless...the world stopped for a moment.  I told her to go ahead and call 911 as neither girl has seized that long in a long time and it's better to have them there sooner than later.  Luckily, Lindsey stopped seizing shortly after receiving the 2nd dose of rescue medication and they didn't need to transport her to the hospital.  Matt was at home and was able to get to the school before I could and brought both girls home.  The paramedic encouraged us to have them take her in due to the amount of drugs in her system, and not knowing our situtation, I would feel the same if I were him.  But as you know, this is our life and we've been down this road many times.  But, this one shook me... We have gotten used to "short" seizures lasting 2 minutes or less and if you can ever get comfortable with seizures, we were.  But, after this one,  all of the "what ifs" started going through my mind.  What if it's the CBD oil wean that caused this?  Did we make the right decision?  Should we stop the wean and go back up?  Did we make the right decision to try to get into the new trial?  What if we get off the oil and the new drug doesn't work?  Is she going to do it again?  Is Lauren going to have one next?  What if it doesn't stop next time?  What if she goes into cardiac arrest because her heart rate is over 200?  What if one dies or even worse, both?  Yep, every single one of those "what ifs" have gone through my mind the last 18 hours.  Riddled with fear, anxiety and helplessness.  Life is hard.

Mom's been gone for almost 2 years.  Still seems like yesterday...  Last week after Dad's prodding, my sister and I met at Mom and Dad's house and went through Mom's things.  We have put it off because it seems so final.  I'm so glad we were there together to support each other as it was hard.  We inspected every piece of clothing, remembering how much or little she wore it and sorted them all into piles.  Some had special memories tied to them and others hung with the tags still attached.  Mom had a lot of clothes.  Some still carried her scent and I found myself standing there smelling them and wishing she was still here to wear them.  We were able to get through them all and then moved on to memoribilia.  We placed those in a box because we just aren't quite ready to go through those yet.  We found another unopened tube of "Vintage Wine" lipstick that I placed in a bag to take home.  If you ever saw Mom in public, she had a fresh application of Vintage Wine on her lips.  It was her signature color and she never left home without it.  I now have three tubes of it and wear it when I need a little encouragement or have a special place to go.  It makes me feel happy to wear it.  We were able to get a lot accomplished that day and each of us left with some precious memories of mom to take home.  My car was loaded with Mom's clothes as I headed back down the highway towards home.  They stayed there until yesterday when I dropped some off at Goodwill and others at the consignment store.  It was hard to let them go...  Life is hard.

I recently found out a dear man with whom our family adores, who has prayed for our family for years, is an ear to listen and voice to counsel any who need encouragement, a godly man who is a blessing to so many, was diagnosed with advanced esophogeal cancer.  I know there are many, including me, who wonder how God could allow this to happen to a man who serves Him daily?  It's hard to wrap your mind around.  But, we all know there's a purpose for everything in life.  Sometimes we don't understand that purpose and we just have to trust that God knows.  Please pray for Chuck and his dear family.  Cancer sucks and we have lost too many friends because of it.  Life is hard.

Two nights ago I had the pleasure of having dinner with three fellow epilepsy moms.  We try to get together on occasion but, it had been a long time since we had the chance.  None of us chose this life as an epilepsy mom and we share a special bond of understanding exactly what the other is going through.  We sat there and gave the low down on each our our kids, shared our struggles, frustrations and fears.  We laughed, smiled and recalled some memories we have shared over the last couple of years.  We let our hair down, relaxed and enjoyed each other's company.  It was a lot of fun and I left there feeling refreshed and so happy to have the time to spend with them.  Would we be friends if our children didn't have epilepsy?  No, probably not.  But, we were placed in each other's lives because of epilepsy and the desire to help our children have the opportunity to have a better quality of life given to so many others.  I am thankful for the journey that brought us together.  We have fought together for three years now and we will continue to fight together until the battle is won.  Life is hard.  But, it's worth the struggle.

Happy New Year.  2017...it will be a year of change and hopefully the year compassion wins.  

"Life is hard.  And it isnt' fair.  And it really hurts like hell sometimes.  But if you focus on what is within your power to change for the better.  You can. And you will."