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.

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.

Summer of June

June Corley Jessee was born on April 29, 2012 at 6:28pm.  She was 8 pounds 9 ounces and 21.25 inches of pure love.  As with any mother, June’s first few moments in this world will be forever imprinted in my brain.  I remember how June’s skin felt against mine when the doctor placed her on my stomach after delivery.  I remember the sound of her first cry, and I remember how proud and happy my husband was as he cut the cord, took June’s first pictures, and told me her weight and height.  I also remember how blessed we felt as we looked into her beautiful blue, almond shaped eyes.  It was by far the best day of my life. 

Today, I have even more love for June than I did on that rainy day in April, but it is a love that also comes with worry, fear, and desperation.  This summer, Matt and I have taken June from doctor to doctor, hospital to hospital, specialist to specialist.  At first she was diagnosed with "Auditory Neuropathy," a type of hearing loss associated with how the brain processes sound.  Then, when June was a little over two months, she started having Infantile Spasms "IS," a catastrophic form of epilepsy found in babies.  One of the biggest challenges with IS – and there are a lot – is that there are many, many possible underlying causes. This means there are many, many possible outcomes.  I'm told you will see families with children who are struggling greatly, as well as children who have made tremendous progress. Another mother warned me not to compare June to other children with IS and try not to get too hopeful OR too fearful from the stories I’ll read.  

Now, we are focused on figuring out why June is having Infantile Spasms.  She has already been through so much including an MRI, a spinal tap, many EEGs, eye exams, a VEP and several blood and urine tests.  So far all the tests for underlying causes have come back negative, but we are still waiting on the genetic test results (there are about 30 genetic disorders that can cause IS).  At the same time, we are treating the spasms aggressively. So far, we have tried six different medications and while June has stopped exhibiting outward signs of the spasms, the EEG shows that June is still having abnormal brain activity indicating spasms.  June’s neurologist told us that it can be difficult to tell when a baby is having spasms and often the only way to tell is through an EEG.  He also said that unfortunately it is an all or nothing proposition.  June could be having 1 spasm or 100 spasms a day and the concern would be the same. Unlike other forms of epilepsy where the goal is to control seizures through medication, the objective with infantile spasms is to stop them completely so that brain activity can return to normal.  Only when the EEG is normal, can a baby begin to develop normally.    

Next, we are taking June to Dr. Chugani at Children’s Hospital of Michigan who is the foremost authority on IS so that he can evaluate her for surgery.  In the meantime, we are trying different medicines and hoping we will find our miracle drug.

Please keep June, Matt and me in your thoughts and prayers.  I've been amazed at how brave June has been over these last five months through all the tests, doctors, and medicine.  Through all of this, she still smiles, laughs, and squeals.  She is a happy baby even after all that she’s been through, and we can all learn from her strength.  I know we will get through this, but we need your continued prayers and support to help us.

About This Blog

Matt and I decided to create this blog so we could update our family and friends on June’s progress.  June has Infantile Spasms, a catastrophic form of epilepsy found in babies. Feel free to subscribe via email and check back often for updates and pictures.  Thank you all for your support and prayers for June.