New Adventures in Colorado

Oh goodness! I have so much to update since my last post on April 26 about June’s birthday party! I write shorter updates more frequently on June’s Facebook page, so feel free to check that out if you are looking for more regular happenings with June. 

Two days after June’s birthday party we moved to Colorado to start June on "Haleigh’s Hope", a high CBD strain of medical marijuana, and she is doing fabulous!  We started the oil on May 3^rd and so far her seizures have gone down by 50-60% and they are shorter and less intense.  She is better than ever.  June’s holding and controlling her head, interacting with toys, and just overall more alert and happier and calmer. Did I also mention she’s sleeping?! She’s napping twice a day and sleeping most of the night.  Those are a few of the highlights of the positive impact of the CBD oil. Everyday June seems to be making new connections. Yesterday, I was reading her a book on jungle animals, and she laughed when I made a monkey sound! She’s never done that before. It’s little things that make the most difference to us.

I really wish I could end my post here. Just leave you all with the wonderful news and sign out until my next update telling you about June’s new accomplishments and how she’s thriving, but that’s not all.  The good always seems to come with some bad news with us.  In previous posts, I’ve mentioned June’s other health issues. In addition to epilepsy, June also has hearing loss, cortical visual impairment, and nephrotic syndrome. I’ve always focused on the epilepsy because that is the most pressing issue, but lately June’s kidney problems are trying to make their way to the number one spot on our worries list.

As June is doing better on the CBD oil, I was starting to think that maybe all of June’s health problems were neurological.  I was rationalizing that maybe June’s kidneys weren’t growing properly because her brain wasn’t telling them to grow. That was a logical explanation that made sense to me. The brain controls everything, right? And if that assumption was true then if we could stop June’s seizures, she would be healthy and better and all her problems would go away.  See, as a parent of a child with complex medical issues, we want to be able to make sense of it all.  At least I do. Well, then I was sitting in June’s nephrologist’s office telling her my theory and explaning that I thought in no time the protein in her urine would go away now that June is on the oil and her brain is working better.  June's doctor listened to me and when I stopped she calmly said, “It doesn’t work that way. I don’t think that is going to happen in June’s case.”

I shot back, “What do you mean?! Doesn’t the brain control everything? Her brain just needs to tell her kidneys to grow, that’s all! And you guys don’t even know what is causing all of her problems so how can you tell me that my theory is wrong?” I was so angry that I started to get teary. The doctor explained to me that June’s biopsy results indicate a problem in her kidneys that are more complicated than a neurological issue.  Then I just started to hear her voice but didn’t take in anything she was saying. All I could think was this doctor didn’t know anything. I was mad and I left angry and went to my car and called my friend and just started to cry. When I first called, it was to tell her how much I hated June's new doctor and that I wanted a new one.  But then as Hannah listened and I talked, I realized that I didn’t hate the doctor. I hated June’s health problems, whatever it is. I finally let out a big cry and said, “I'm just so tired...This isn’t the life I wanted to live.” I just imagined something so different for Matt and me and our family. Sometimes, I see people at the park or the pool and I think, they are living my life. And that’s just the truth. But then you go on and you keep living because your life is what you make it. Life is better when you stop imaging the way things are supposed to be and you just live them the way that they are.

Well, a few days later we got June’s urine results back and it turns out my theory was wrong and June’s kidney function is actually getting worse, not better.  I was still holding hope that my theory was right and I was disappointed and shocked when the doctor told me how high the protein to creatinine ratio is in June's urine. So now they want to put June back on a steroid to see if that helps her kidneys hold on to protein.  The good news is, for now, June is stable. Her blood protein levels are normal, but we’ve really got to get this under control or eventually they won’t be and no one has told me what to expect when that happens or when that could happen.

When I heard this news I was so upset. I said to Matt, “June is doing so well and she is so happy. Can’t the universe just let me have a day of pure happiness with June?” Matt said that June is still all those things and the urinanalyis doesn’t take any of that away. I am so lucky to have Matt. He is so strong and supportive, and he is my rock. I just hope I ground him like he does me. So, June will likely start the steroid on the week of July 6^th. It is not going to be as strong as ACTH, so I hope the side effects will be less intense.  As always, thanks for your prayers and support.

Happy Birthday Junebug!

Today was the best. We had a birthday party for June and she was surrounded by so many people who love her. Last year we didn't throw a party because she was on ACTH to treat her seizures, which made her immuno-suppressed and very uncomfortable, so this was her big party.

I am happy we are making new, good memories of June’s birthday. Last year June’s birthday was difficult for me not just because June was on ACTH, but also because June’s birthday made me sad.  The night June arrived was so wonderful and then it was followed by the worst day of my life when June didn’t pass the newborn hearing screening. It was the first of many tests that would come back with bad news and more questions.  I left the hospital with our newborn baby girl terrified of what the test meant and no one could give me the reassurance I needed.  So in a way June’s birthday is almost a reminder of a dream that I lost the day after she was born.  But as life unfolds, I’m seeing things are shaping out to be far better than what I could have ever dreamed despite all the hardships we have endured.  We are exactly where we are supposed to be.

Sometimes I imagine talking to myself two years ago as a new mom riding in the backseat of our car sitting next to June as Matt drove us home for the first time. In this image in my mind, I'm whispering in my ear as I hold June's hand, "It will be okay. You will be okay."  That's what I wanted to hear then. I was looking to doctors and family members to tell me that it will be okay and no one could then.  But I can now. It will be okay because you will make it okay.

I could never have imagined the love we feel for June and each second we love her more than the last. I am blessed to be her mommy because she is my teacher on unconditional love, perseverance, and just being present. She is amazing. Here’s to June and new memories of such a wonderful day!!

Oh, and a huge thank you to my sister, Barbara Balossi, and brother-in-law, Matt Balossi, for hosting the get- together as our house is a huge mess since we are getting ready to move to Colorado!  I have so much to update about our trip to Colorado and I am planning to do that this week.

Little Lobbyist

On Tuesday, the Jessees went to Jefferson City, MO so that I could testify before the House General Laws Committee on a House Bill that was introduced last week by Representative Caleb Jones and is supported by Senator Eric Schmitt.  The bill would allow children and adults with intractable epilepsy to legally access high CBD oil, such as Charlotte’s Web. 

June on her way to Jeff City

We are so lucky to have two strong advocates in the House and Senate. Caleb and Matt have been friends for a long time and when he and his wife, Lindsey, found out we were moving to Colorado to access Charlotte’s Web he asked how he could help us and other families in Missouri going through our same struggles.  Matt and I became close with Eric and his wife, Jaime, after June was diagnosed with Infantile Spasms.  Their son also has intractable epilepsy and they have been so helpful to us on our special needs journey.

Below is the text of my testimony that I want to share with you all. I am pleased to report the bill passed the General Laws Committee by a vote of 11-0.  The next step is for it to go to the Rules Committee and then for a vote on the House Floor.

A few people have asked us if we will still move to Colorado if this legislation passes and we will.  We are not sure how long it will take for the law to be implemented and June needs this medicine now.  It will allow us to come back to Missouri though and that makes the move away from our family and friends a little easier. As always, thank you for your support!

Testimony on House Bill NO. 2238 - House General Laws Committee

April 8, 2014

Thank you Mr. Chairman and members of the committee. My name is Genny Jessee and I am the proud mother of June Jessee.  June is almost 2 years old and has intractable epilepsy which means medicine has not worked to control her seizures. We saw her have her first seizure when she was only 2 months old and ever since then we have fought tirelessly to make them stop. June is a sweet girl.  She smiles, laughs, and squeals, but she can’t do things other kids can even though she works very hard – harder than I’ve seen anyone. She can’t sit, crawl, walk, or talk. She spends most of her time in doctors' offices, the hospital, and therapy sessions and has been through much more in 2 years than some people endure in a lifetime.  In short, June is severely developmentally delayed because her daily seizures interrupt her brain from making the connections that come easily to you and me.  June is why I am here today to talk to you about cannabidiol oil, also know as CBD oil, which is made from a strain of medical marijuana that could save June’s life along with thousands of other children here in Missouri suffering from intractable epilepsy. I believe that CBD oil should be legally available to citizens in Missouri because of three important facts. First, it is showing to be safe and effective.  Second, we, and many other Missouri families, are out of legal medical options, and third, its use should be a choice left to a patient or caregiver, and his/her doctor without the interference of government.

CBD oil is a safe and effective option for children with difficult to control seizures. CBD oil comes from a hybrid strain of marijuana that is low in tetrahydrocannabinol also know as THC, which is the psychoactive ingredient in marijuana, but rich in CBD. Its medical potency is due to its high CBD content. High CBD plants have shown results in reducing and stopping seizures in children with intractable epilepsy with minimal side effects. The plant is made into an oil and given to children by mouth either via a syringe or in food. This plant and oil is not smokeable and has no recreational potential because it does not produce a “high.” Additionally, the plant is grown organically and the medicine is tested for dosing as well as molds, pesticides, and solvents.

Pre-clinical data indicates the side effects in CBD oil and related products are very limited or non-existent.  This factor alone is remarkable considering most seizure medications have horrific side effects that could include intense drowsiness, irritability, slowed thinking, dizziness, memory problems, trouble concentrating, problems with speech or balance, kidney stones, acidosis, weight loss, weight gain, sleeplessness, vision loss, irregular heartbeats, feeling like you might pass out, diarrhea, constipation, and even death. In fact, I remember very clearly sitting in June’s neurologist office as he recommended a drug called ACTH that could kill June.  He told us the risk of death was real and scary but he thought the potential benefits outweighed the risk of death.  When a doctor suggests a drug that could potentially be fatal, it puts other drug risks into perspective.  In addition to being safe, CBD oil is showing to be effective. The anecdotal evidence of patients and families is that CBD oil results in remarkable seizure control with improvements in quality of life.

In addition to being safe and effective, CBD oil is another tool for families living with this devastating diagnosis when they have run out of time and options. Children with intractable and catastrophic forms of epilepsy have already tried and failed all the medications available to them. We’ve tried and failed 11 different medications along with the ketogenic diet. As mentioned earlier these treatments come with horrific side effects. Despite the risks, we tried these treatments because the doctors told us the possible benefits outweighed the risks, even when the possibility of a drug or diet working was only 2 -3%.  In addition to these traditional therapies we have also seen a homeopathic doctor and we visit a chiropractor regularly.  Basically, we have tried everything we legally can.

After June’s neurologists suggested we retry medicine June has already tried and failed we decided we needed to move to Colorado to start June on the CBD oil, because we believe we should try something new rather than try a drug that we already know did not work well. Where is the science in that? It is unfortunate that we have to move to Colorado to get June this much-needed treatment but the state of Missouri legally prohibits us from accessing this medicine for June.

My final point I would like to make is the use of CBD oil should be choice left to a patient or caregiver, and his/her health care provider without the interference of government.  As I said earlier June and the thousands of other children here in Missouri do not have time to wait for this medicine to become FDA approved. Science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. We don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government intrusion. The way we have already gone about treating June’s seizures is not science. There was no method behind which medicine or treatment we tried first. When diagnosed, June’s neurologist asked my husband and me which treatment we wanted to try first and subsequently the choice was always ours based on the information provided to us. I believe we have that same right in this instance as well.

Opponents may say, “Why not enroll June in a trial.” Well, it’s not that easy. The studies underway are too small because the Government holds harsh restrictions on the number of patients allowed in the study making it nearly impossible for children to get access to studied medication via a clinical trial.  

Opponents also may say to “stick with the medicines that are approved by the official process and we shouldn’t try to take short cuts.” To that I say, we’ve already tried what there is to offer, and imagine what you would do in our situation? If your answer is different than ours, then if you are faced with our circumstance, you have the right to refuse treatment. I choose to try everything we can to possibly save June’s life and I should have the right to make that choice with June’s health care provider without the interference of government and other public interest groups that have nothing to do with the issue we are discussing. The irony in this argument is pediatric neurologists and physicians routinely recommend substances to their patients that are not FDA-approved medications. ACTH was not FDA approved for Infantile Spasms until 2010, but it is the frontline medication for treating infantile spasms and neurologists have been using it as such for decades. Skeptics also may say we don’t know if CBD oil will work, but we didn’t know if the 11 medications June already tried would work. I understand that is a very real possibility, but I am hoping with every ounce of my being that it will offer some relief.  

Our children are counting on us to do the right thing for them. This is not a difficult decision.  CBD oil is safe and effective, it is giving families hope when they no longer have medical options, and finally, it is putting the treatment decisions in the hands of patients, caregivers, and doctors rather than in the hands of policy makers. Saying yes to this proposed bill would be saving June’s life. Thank you for saving June and thousands of children just like her.

Not Giving Up

Matt and I are overwhelmed by all the support we’ve received from you after my last post.  So many of you offered to connect us with people you know in Denver, advice on where to live, and asked the very important question, what can be done to change this so every child who needs it is able to access medical marijuana?  It’s an amazing feeling to have you all behind us. It affirms that we are doing the right thing for June.

Some of you have also asked what led us to this decision, and rightly so.  I haven’t written for a long time and then all of the sudden I post that we are moving to Colorado to treat June with medical marijuana. That’s a big jump!  Well, it’s been a long time coming and it was a series of several events that led us to this conclusion.

I started following medical marijuana to treat intractable epilepsy in children about a year ago when another family I know from St. Louis told us they were moving to Denver to start their daughter on Charlotte’s Web to treat her seizures that are similar to June’s.  Her daughter is several years older than June, and they have been so helpful to our family in navigating this new world we find ourselves in.  Around that time, a story in the Washington Post came out about how medical marijuana was helping a lot of children just like June.  This was also when June’s seizures had stopped temporarily, so I was paying attention, but I wasn’t jumping through hoops to get the medicine like I am now.

In August, June’s seizures came back so I started researching it more.  I talked to her doctors about it, but they dismissed the claims that it was a viable option.  What pushed us over the edge was what happened during a scary event in December.  I accidentally mixed June’s medicines up, and I gave her 4 times the amount of one medicine thinking it was another. I realized the mistake immediately and called 911.  June was okay, but it was a frightening experience. Matt and I began to feel fed up. At that time June was on six different medicines that we gave her two or three times a day and most of them weren’t doing anything.  It’s easy to get them mixed up, and I did.  I was so scared as I held June in the ambulance on my way to the ER just praying June wouldn’t die from an accidental overdose. That’s when we decided to look into moving.

Finally, we made our definitive decision after June’s neurologists suggested we retry medicine June has already tried and failed. ‘You’ve got to be kidding me,’ I thought, ‘why?! why would we do that?!”  I said I wanted to try something new that could stop her seizures, and they told me their goal was to make June as comfortable as possible but controlling her seizures was unlikely. I just don’t understand how they can say that when CBD is an option. Before we give up, shouldn’t we try everything?  And so we began the process of moving to Colorado to try a different treatment instead of one that did not work well.

I’ve learned that no one cares about your sick loved ones as much as you do.  I used to think when people got sick, a team of doctors sat in a room wracking their brain about the causes and not stopping until they were able to treat the patient. I just haven’t found that to be true. I think they did in the beginning, but I don’t get that sense anymore. At some point you have to choose the direction that is right for you and your family because just like June,

we aren’t giving up.

Colorado Here We Come!

After considerable thought, we have decided to move to Denver, Colorado later this year to start June on Charlotte’s Web, a strain of medical marijuana that is showing promising results in children who have failed all the FDA-approved pharmaceuticals available to treat epilepsy. It is unfortunate that we have to move our family all the way to Colorado to get June this much-needed medication, but the state of Missouri legally prohibits us from accessing this medicine so we have no choice.  

I believe strongly that this medication should be legal in every state for the thousands of children like June who are suffering from intractable epilepsy.  Skeptics may argue that we don’t know if this will work, but we didn’t know if the 10 different seizure medications and special diet that June has already tried in her short lifespan would work.  In fact, doctors recommended treating June with a drug that had a 3% chance of working and one of the side effects was death.  Skeptics also say that we should wait for the medication to become FDA approved because laws will change “eventually.” Doctors’ attitudes are already shifting and small FDA trials are underway, but June does not have time to wait for that to happen because her brain is developing now – not “eventually.”  Every day June has seizures delays her development so we cannot wait any longer.

Unfortunately, we cannot just start the medication tomorrow in Colorado because it is not that easy and many procedural steps are required.  Once we move to Denver we still have to get on the waiting list for the medication, so it will still be some time before June is able to try it, but we are hopeful and excited about this next step.

Thanks for all your thoughts and prayers.  I will update you all through the blog as we know more, but we wanted to let everyone know as soon as we made the decision.  So our journey with June continues…on to Colorado.