It's been awhile since I posted on here. When we realized the CBD oil did not work for June, it got to be too painful to post updates. Many of you know that June passed away in February of this year, but I wanted to update the blog to show that.
Here is her obituary:
Below is what I said about June at her funeral:
You are my darling, my angel, my star, and my love will find you wherever you are.” These are the closing lines of my favorite book to read to June, “Wherever you are my love will find you” by Nancy Tillman. I’ve said those words a thousand times to June, and I could never mean them more than I do now as I send my love to June in heaven.
When we realized early on that June had significant health problems, and we didn’t know what her future held, I told myself that no matter what, I wanted June to feel and know love. And, boy, did she ever know it. Not just from Matt, George, and me, but from her grandparents, aunts, uncles, cousins, friends, therapists, teachers, doctors, nurses, and people all over the country who did not even know her. I am in awe of how many people June touched. For someone with limited physical abilities, her impact on this earth knew no bounds.
June was easy to love. She was so sweet, and her smile and laugh were contagious. But what some people may not know about her is that she was also very sassy. She had an air of importance that we often referred to as her diva complex. She just expected everyone to do things for her, and she didn’t care if it was her parents, her therapists, or the neurologist… she was going to have you at her beck and call. One of my favorite things about June was how she used to trick her therapists into thinking she was asleep. As soon as they arrived, she would close her eyes and pretend she was sleeping. Every so often we would see her peek with one eye open and then quickly close it if she saw we were looking towards her. Then, without fail, as soon as the therapists closed the front door, June would perk up and was ready to go.
June was also a fighter. She faced incredibly difficult circumstances from the moment she came into this world. She went to countless doctors’ appointments all over the country, had every test in the book, and she tried numerous treatments with horrible side effects that would be uncomfortable for any adult yet alone a 4-month-old baby. I’m not going to say she did it all with a smile on her face, but she did manage to smile through it all and that is remarkable and something about her that I will always carry with me.
June was and always will be my teacher and my inspiration. She taught all of us to see the beauty in the hardships, to look for the helpers in the world rather than focus on the tragedy, but most importantly, she taught me about unconditional love. I love that little girl with every ounce of my being and not a minute will go by where I do not think of her and her beautiful spirit. I am so blessed to be her mommy.
Thank you all for coming today and honoring our baby girl. Goodnight my sweet angel. Mommy loves you.
...
Thank you all for your thoughts and prayers for June and our family. We couldn't have made it through without all of your love and support.
Loving Our Junebug
A glimpse into our family's journey with June and intractable epilepsy.
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Tuesday, June 14, 2016
Saturday, June 21, 2014
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 3rd 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 6th.
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.
Saturday, April 26, 2014
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.
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.
Thursday, April 10, 2014
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.
Monday, March 24, 2014
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.
Tuesday, March 18, 2014
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.
Sunday, October 13, 2013
Here we go again: Tonic Seizures
Last week we took June to children's for an EEG because we thought she was having seizures again. It turns out she is having tonic seizures. These are different than infantile spasms. Doctors tell us they are not as catastrophic to development as infantile spasms, so we are taking that as the silver lining. But I'm still in the beginning stages of researching to learn what this seizure type means. The brain is so darn confusing! Right now, we are trying to get them under control with medication. Here we go on this crazy roller coaster again. Please send healing prayers/thoughts/vibes to June. She's already been through so much. She started a medication for her kidneys last week too and we are hoping that works as well.
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