A New Trial

As I sat down to blog, I saw this:

She made it clear that I was to not be blogging; she needed some snuggles.

Then this happened:

Who am I to turn down puppy snuggles?  Which then turned into a nap. Stella has brought so much joy to our family.  We couldn't ask for a better dog!  

Here we are...almost a year since my last post.  I'm not even sure where to begin.  Everyone is doing well.  We made it through the 1st anniversary of Mom's passing.  It's been tough.  I think about her a lot.  Sometimes I think about her and the tears just start to fall.  Other times I find myself in a situtation and think "what would Mom tell me to do?"  Most of the times I am thinking to myself, "I really wish Mom was here..."  But, she's in a much better place, I know.  No more pain and suffering.  For that, we are thankful.  

Delaney and Mason are doing well.  Delaney is still at Coe College in Cedar Rapids and keeping very busy between school, sorority and work.  She will be home for Christmas break soon!  Mason is a junior at SEP.  He played golf this fall and keeps himself busy going to the gym or playing video games.  L&L are now freshmen at SEP.  I still cannot believe it.  They really like school and the highlight of their day is riding the bus to and from school.  Matt and I celebrated our 20 year anniversary and spent a few days in St. Thomas in October.  It was a very relaxing and fun week. 

The girls finished year one on their clinical trial for CBD oil and we signed on for another year in August.  I would like to say it is making miraculous changes in our girls and they are free from seizures but, I cannot.  I can say that it is making positive changes in certain areas.  Their cognitive/communication skills are the most improved areas.  That makes perfect sense since CBD is a neuro-protectant.  Yes, that horrible drug marijuana is helping my daughters' cognition; can you believe it?  Sorry...I digress. They crack us up and amaze us when we can see the wheels turning.  It's amazing to watch and listen as they communicate with each other and others.  The seizures...not as good of control as we had hoped. The number of seizures are still about the same.  They seem to recover more quickly.  Unfortunately we still live in a constant state of panic if they are up and about as seizures strike at any moment.  We can often be found whipping our heads around ready to jump into action if we hear a strange sound coming from them.  Sometimes they look at us like we are crazy.  There's never a dull moment...and we are always on edge.   

In October, our former Neurologist at Mayo called and asked if we would be interested in taking part in a new clinical trial.  It is for the drug Fenfluramine.  It has been showing great improvement in patients with Dravet Syndrome in Belgium and the FDA has started a clinical trial here in the States.  She said she was excited for this trial and encouraged us to consider.  The girls would need to be weaned from two drugs that they are on or they would not qualify for the new study.  One is Stiripentol, another non-FDA approved drug they have been on for about three years which we were planning to try to wean anyway.  We started weaning the Stiripentol back in October and the girls just took their last dose this week.  The wean has gone pretty well with only a couple of rough patches along the way.  The other is Epidiolex (CBD oil.)   We had an appointment with our Neurologist in Iowa City on Monday to discuss stopping the Epidiolex trial.  We decided to go ahead and will begin that wean around Christmas.  I'm a little torn on this one.  We have seen some really great improvements as I stated earlier with their cognition and communication so I worry we may lose what we have gained.  Once we withdraw from the Epidiolex trial, we will not be able to access it again unless it is FDA approved.  But, at the end of the day, our main goal is to reduce seizures.  Epidiolex isn't doing that.  Plus, IF we can cut down on the number of seizures, we should have better cognition and communication.  So, if all goes well with the Epidiolex wean, we will have our first appointment at Mayo for the new trial in late February.  It will be a lot like the Epidiolex trial in Iowa City except our travel time will be doubled.  The new double-blind placebo study will take about 3-4 months.  When it is done, the girls will be able to enroll in an open label study like we did with Epidiolex where they will both be on the real drug.  There are some possible side effects with this drug, the major one causing heart problems, so the girls will be going through a lot of testing during the trial.  That's the scary part...what if they are harmed?  It's unlikely and with the frequent testing they would catch it early but, you still worry.  

So, that's where our journey is now headed.  Please pray for our girls.  Specifically that the Epidiolex wean goes smoothly.  Please pray for their safety.  Weaning medication is always scary as you really don't know how well it is working until you take it away.  

So this just happened...

I guess that means it's time for me to sign off.  We wish you all a very Merry Christmas and a Happy New Year!  

Happy New Year!

Happy New Year to you and yours.  We hope that 2016 will be a year of great opportunities and blessings. I'm not going to lie, I wasn't too sad to see 2015 go; it was a challenging year. We did have a lot of great events in 2015 like Delaney's high school graduation and Lauren and Lindsey's CBD oil clinical trial among others and for those we are grateful.  In my mind, the year will always be remembered as the year Mom went to Heaven.  We will be coming up on a year since her passing in just over two months.  Some days it feels like yesterday... Thankful she is no longer suffering but, miss her more than words can say.

So I haven't updated since August 31st.  I'm kind of a slacker...but, it's been crazy busy.  I started working from home in July for the Iowa Public Health Association  as a contracted Administrative Assistant.  I have really enjoyed it although the hours are very limited.  In October, I accepted an additional part-time position for another non-profit called Heartland Youth Choir.  I am the Director of Business and work 20 hours per week.  I am able to work while the kids are in school and can also work some from home.  It's been a blessing to have the flexibility we need.  If you have children who love to sing and you live in central Iowa, you should check us out at www.joinhyc.org.  I work with two other fabulous women and have really enjoyed my time there so far.  Needless to say, it's been a transition for our whole family but, we are adjusting well and I like earning a paycheck and getting out of the house.

The girls are doing well.  They are both now on cannabis oil.  I still cannot say much about our clinical trial but, I can tell you that #cannabisismedicine.  What you see below are two girls who are seeing clearer than they ever have before.  Minds that are flourishing and wheels that are turning. Is it giving us total seizure freedom, NO.  Is it giving us a better quality of life, YES.  Does this light my fire to fight even harder for others to have this legal right to access, ABSOLUTELY!  2016 is going to be a pivotal year both at the state and federal level for medical cannabis.  It's time to stop the madness and belief that cannabis has no medicinal value.  Legislators can no longer use that as a valid excuse.  The science is there and so are the success stories.   Please join us in our fight for legal access to medical cannabis!  The state legislative session starts up again on January 11th.  If you haven't reached out to your legislators, please do so.  A simple email asking for their support of medical cannabis is sufficient.  If you have a story to share, please do so. On the federal level, please reach out to our federal legislators and do the same.  You can also sign a petition for Senator Grassley here:  Grassley Petition.  He is holding up a very important piece of legislation and needs to allow for it to proceed.

Please also continue to pray for our girls.  We will soon start weaning one of their seizure meds and that is always a scary time.  Their bodies have become addicted to the harsh pharmaceutical drugs and we always worry about increased seizures as their bodies adjust.  We are very hopeful that someday we will be rid of the pharmaceuticals that are not helping control our girls' seizures.

In other news, Delaney finished her first semester of college and is looking forward to starting her next semester in a couple of weeks.  She joined a sorority and has been keeping busy with that and working part-time.  She really likes college and has made some great friendships.  We are glad to see her so happy.  Mason is not looking forward to his second semester of his sophomore year.  He would like to fast forward to graduation and be done with school.  He turned 16 in September and got his driver's license.  He is also working and enjoys the paycheck. Stella is still bringing a lot of joy to our family.  She cracks us up with her silliness.  She is pretty demanding of attention and when she feels she isn't getting enough, she makes sure you are aware.  I often work on the computer with a 40 pound dog on my lap...

Matt and I were able to sneak off to Las Vegas with some good friends in November.  It was great to get away for a few days.  We had a blast!  We zip lined down Fremont Street, a first for all of us.  It was a cool experience.  We are thankful for great friends and the opportunities to enjoy some much needed R&R.

We are looking forward to great things in 2016.  Spending time with family and friends and treasuring our time together.  Focusing on moments in life that really matter and not getting wrapped up in superficial "things."  In the end when all is said and done, it won't matter what we have in our lives but who we have.  We are thankful for all who have followed our journey over the years and continue with us on this wild ride.  The journey continues...stay tuned.

Kim