Couldn't or wouldn't? There is a difference.

Sticker on Abby's Water Bottle

Over the last several months I have thought many times about the common sentiment that has been shared with me. When it came to Elise, so many people have said, "I couldn't do what you do." That sentiment never sat right with me, and I just never quite knew how to respond to that.

As we talked with palliative care and hospice near the end of her life, I finally got much more clarity after all this time. The social worker for hospice care said something like, "What you have done with her is amazing. The sacrifices were huge. It is a lifestyle. You made a choice to live your life in a way that would help her the best that you could while she was here."

As I pondered what that all meant to me, I landed on a belief that I have held for many years. "I couldn't do what you do" really isn't a true statement. I have always told people that I am just an average Joe in a very not average situation. If you have ever spent any time with me, you know that I do not have any superpowers. God didn't pick me because I could handle so much more than anyone else. That is simply something we have adopted in our society that is grounded in little to no truth what so ever.

So, if anyone could do what we did, then what? It boils down to "would you" rather than "could you". What if the statement was, "I wouldn't do what you do"? I'm sure many people have thought that over the years, but nobody is going to say that. But, at the crux of the statement, that is what it boils down to right? It isn't a matter of "could" but really a matter of "would". You could absolutely do what my family and I did. It would NOT be easy, but you could do it. So, the question really is would you do it? It is a rhetorical question. Until you are faced with that decision, you likely have no idea what you would do. At least that is how it was for me and many others that I have spoken with about this.

Elise has been gone now for over a month. My every day is so much different that it is sometimes unbearably uncomfortable. The quiet and lack of activity is unsettling. For people that spent so much time at home, we have been used to be SO busy that we could not take on more activities outside of the house. I now find myself with so much free time, I don't know what to do with myself.

When talking with palliative care back in November, the doctor said something to me that I have been thinking about ever since. She said, "Medical advancements over the years have been amazing and have allowed children to live longer at home. But, what we have failed to ask ourselves is, just because we CAN make it so that these medical interventions happen at home doesn't mean that we should. We have not thought about the burden that has been put on the family unit when kids are living at home with extreme medical conditions and not a lot of help from the medical community." This is incredibly true. As things got more and more challenging for Elise, we began to ask ourselves some of those very questions. What was "too much" for her, and also too much for us. I can tell you, these are not easy conversations. I'll probably delve into that more on another day.

We have several friends raising complex kids like Elise. We know intimately the struggles that they face. Telling them "I couldn't do what you do" isn't really helpful. Give them a hand up in whatever way you can. Send a card, phone call, text, make/buy a meal, sit with them, whatever that might be. Just be there. That is all that I wanted, and I'm sure that many others have felt the same way.

Searching for My Place

When I first starting blogging several years ago, there were many people that had been encouraging me to write a book. I understood the reality at that time and knew that it wasn't going to happen right then. It is not out of the question for the future. It is just a matter of doing it. 

Do people want to hear what I have to say? Will it be helpful to me and/or others? What would I even talk about? All of that has been a barrier for getting started over the years. And, more than anything, time was the biggest barrier.

Since Elise passed away on Christmas Day, all I have had is time. Elise took around the clock care for almost the entirety of her 15 years of life. There was very little time that wasn't filled with feeding, drinking, toileting, changing, transportation, medication, seizure management, etc. It was A LOT! I know that, but not providing for all of her needs was not an option.

On Christmas Day, all of that changed. Suddenly, the vast majority of the way my time was spent came to an end. There was no longer a need for all of the above items. I know there should be tremendous relief that all of those responsibilities are no longer a part of my life, but it WAS my life. That is how I spent almost all of my time. Now she is gone. What am I supposed to do with my time?

I am so far removed from the profession that I trained for, the hobbies that I used to do and the things that used to occupy my time before kids that I am completely lost. I am struggling most days just to figure out what to do with myself. Over the last couple of years, many of my days were spent texting back and forth with Elise's teacher during the school day, communicating with doctors and nurses, communicating with caregivers that worked for us and communicating with Kelly about whatever was going on. Many of the constraints put on my time had become so overwhelming that I was barely able to keep myself afloat. Yet, somehow I managed.

I know I will figure it out. I know it has been less than a month since Elise passed away. But, neither of those sentiments make the lost feeling any easier. I'm not going to start writing that book yet. But, I am going to go back to blogging as I work to figure myself out.

It Shouldn't Have to End Like This........for Anyone

In April of 2021 Elise almost died. There, I said it. It is not something I have really spoken about with anyone outside of a very small circle of people. This was not a first, and not likely to be a last close call occurrence, but it was different for sure. It has been a number of years since I stood on the outside wondering if this was the end of the line. Just like the other times, it was kind of a surreal experience. 

Elise was admitted to the hospital the day before. As she has experienced many times, we were not able to get a handle on her seizures and we could not get them to stop. 36 hours of trying various things ultimately resulted in her stopping breathing. At about 2:30 a.m. I was standing beside her bed and she was getting sick and having strange seizure like activity. She settled, closed her eyes and I tried for the 10th time to go back to bed. A couple minutes later some of her monitors started alarming. This also is not uncommon. There is a lot of false "alarming" when you are staying in a hospital. A couple of nurses came in, did a few things with her to try and change some positioning, but that didn't work. They called for respiratory who was in the room in about 30 seconds. She also tried a few things but that wasn't appearing to improve the situation either. 

At this point I don't think I was grasping how dire the situation was becoming. Not five minutes before I was standing next to her bed and talking with her. A moment later the decision was made that intervention was going to be necessary. They called a "Code Blue" and the room and hallway were filled with people almost immediately. A team of people arrived and immediately jumped into action trying to save her life. The hallway is filled with backup and people that are around to run for supplies when needed at a moments notice. They also send social work, a chaplain and security. The social worker and chaplain were my new babysitters and there to tend to whatever I needed. This was not the first time that I (or we) have been chatting with social work and a chaplain in the middle of the night. It does not get easier, but it is not as scary when you know what to expect. Several times they said something to me like, "You seem awful calm. Do you understand what is going on? Is there anything we can get you?" After talking with me a bit, it seemed they were able to figure out that this just wasn't my first rodeo. I understood full well what was going on and what most of the likely scenarios were that were playing out in front of me.

After they were able to determine that she was stable enough to be moved, they transferred her downstairs to the Pediatric ICU (PICU). Something occurred there that I was not prepared for. During these times of the COVID pandemic, they had established a new protocol that ALL new patients coming in to the PICU needed to be tested for COVID. While they were awaiting those results, only a small number of people were allowed in the room and no parents. All hospital staff was dressed like those that you see in the picture. This is a stock image that I pulled off the internet. But, it is indicative of what I could see in Elise's room.I wasn't really caught off guard that they would be testing for COVID, but I was more caught off guard by the fact that we had been in the hospital more than 24 hours already. No testing was needed before and nobody was wearing the "space suit" as I liked to call it. But, they were all wearing them in her room. Those were complete with their own respiratory units that ensured they were only breathing in filtered air of their own and nothing from the room they were standing in. I'll skip the rest of the hospital stay as it is less important to the overall story. Obviously, Elise was eventually discharged from the hospital and has been doing pretty well since then (knock on wood!). 

I have thought a lot about why that hospital stay was "different" in my mind. What about it has been eating at me? In the end I think that it comes down to the COVID protocol. I get why they do it and have no issue with how things were handled, don't misinterpret what I am saying. What hit me as I was sitting outside her room watching all of this transpire was how lonely this entire experience was for her. Was she awake and aware enough to know what was going on? If so, was the only thing she could see is a bunch of people in space suits zooming around the room? Was she going to die on that table without anyone from her family by her side? I was 10 feet away!

We have spent the past couple of weeks talking with various doctors about the COVID vaccine and whether it is appropriate for Elise. Like most parents, I worry about the long term effects of my kid getting the vaccine. But, I worry about the long term effects of them not getting it as well. We still have at least one more doctor to talk with, but it appears that the recommendation for her is to get the vaccine. As I wrestle with the consequences of her getting the vaccine or not, my mind instantly goes back to those images of me sitting in the PICU watching them work on her through the window while she was completely alone.

To vaccine or not to vaccine is not a political decision in my house. It is a purely medical decision that needs to be made with considerable thoughtfulness and conversation. The prognosis of medically fragile kids is so unpredictable. One thing I do know is that I do NOT want her to die on a table without her family around her if it can be avoided. Life should not have to end like that for Elise. Really, life shouldn't have to end like that for anyone.

Will She Outgrow These Seizures?

As I mentioned in my last blog post, Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure.

Seizure disorders can be so varied among people and their treatment can range from simple to extremely complex. Over the years I can't tell you the number of people that have said something like, "my sister had a seizure once when she was 8 years old. It scared my parents to death. But she outgrew them and never had them again." That is a common story and the way many seizure journey's end. But, that is not the case for Elise.

A Typical EEG

The image on the left is what a typical EEG (electroencephalogram) reading looks like for the majority of people in the world. EEG's are done by putting electrodes onto various locations of a person's scalp. I won't get into how to read it too much. But, most importantly, you can see how the brain waves are very similar to each other across each wave pattern. Doctors read EEG's to determine if there is seizure (or abnormal brain) activity, what is occurring before and when something abnormal happens, and where in the brain this abnormal activity is happening. A lot can be determined in a relatively short reading.

A Textbook LGS EEG

During Elise's last hospital stay, the neurologist told us, "Elise's EEG is a textbook example of a Lennox-Gastaut patient." That has never happened to us before. Elise's struggles rarely ever fall within the realm of what doctors see in textbooks. Unfortunately, I don't have a screen shot of Elise's last EEG. But, I did find a "textbook example" on Google. You can see it on the right. Really, need I say more? Isn't it fairly self explanatory?

This image on the right is Elise's brain 24 hours per day 365 days per year. She is in a constant state of over activity in every area of her brain. "Most" seizures are localized to a specific area of a patient's brain. Elise's seizures are in all quadrants of her brain and are crossing over quadrants constantly. In periods of rest her brain activity looks like the EEG directly above this picture.

Seizure activity of an LGS patient

During an actual seizure, which happens several times per day, her EEG reading looks a bit more like the reading on the left. She can go through several minute periods where that increased activity in the middle of the image is most predominant. Then, after a moment of recovery (usually), her brain activity will resume back to the "textbook LGS patient" reading.

When Elise's seizure journey started about 11 years ago, we were told to expose her to as much as possible and treat her as we would any typical child. When a child develops seizures, there is always the possibility that the brain will "re-wire" itself and make new pathways to deal with any injury or insufficient activity. As a child gets older, the likelihood of that rewiring taking place gets less and less. The female brain is believed to not be fully developed until age 21 (it is older for males). However, when there is significant damage done to the brain, cognitive function certainly does not continue to improve to age 21 and beyond.

After so many years of trying SO many things, I am trying to come to terms with what the future holds for her. It has been made very clear in this past year that we will likely see more regression of skills and progression of the seizure disorder. Each hospitalization is a set back and an establishment of a "new normal" in her life and ours. There has always been a cause and effect relationship to her seizure activity. But, this past year has taught us that this will not always be the case in the future. Sometimes she will just struggle because she has LGS and the seizures dictate so much of her life.

Summer time generally brings a bit of better health for Elise. We are never quite sure what to attribute that to, but we'll take it. Like most of us, she doesn't really enjoy the Kansas heat in the summer. But, she enjoys floating in the pool on hot summer days and long naps when inside. In the grand scheme of things, those are not all bad attributes to have.

A Visit from the Notification Officer?

I grew up in a military town. I like to say I was an Army brat by default. My dad retired less than a year after I was born. My siblings moved all over as part of his Army career, but I did not. I was born on Fort Riley, KS and never left the area until after I was 18. Interestingly, I live less than 15 miles from where I was born again today.

My childhood was filled with many of the normal military things. I had lots of friends over the years that moved in when their parent was stationed at Fort Riley and then moved away within a couple of years to move to their next duty station. While my dad no longer reported to work on post, I understood many of the aspects of military life. I can recall my dad telling me at some point that you never wanted to have someone in a dress uniform show up unannounced when the soldier was deployed. That was never a good thing. That is exactly what happened in my house in 1991, but it was not at all what I thought.

My brother was in the United States Marines and was deployed to Iraq during the beginning stages of the Gulf War. There was 24 hour media coverage of the war, bombing of buildings, and coverage of the killing of many people. He was in the Force Recognizance unit. Generally this meant that we didn't talk much. When he did call home it was usually to talk with one of my parents and it was also relatively short. He was back in the US at his base for a short amount of time and was talking with my mom on the phone. During that call he received some kind of notification that he had to hang up immediately and get moving. Whatever was said didn't set well with my mom. She had sent her own husband off to deployment many times. She was a veteran. But, however this went down just didn't set so well with her. She was uneasy. The non-stop media coverage of the war effort, and my dad's obsession with watching ALL of it, did not help either. It had been several weeks since we had heard from him. Then one day the doorbell rang.

I believe it was a Sunday afternoon. I looked out through the window in the doorway and there were two soldiers in dress uniform and a black car at the end of the driveway. I couldn't even begin to comprehend what was in front of me. All I could think to say was "Dad! There are soldiers in uniform at the door!" He moved quicker than I can recall seeing him move and opened the door himself. I sat down on the couch and began to cry. I heard about this stuff and saw it in movies. But, I never thought it would be something I would have to handle myself. Fortunately, I did not.

Those "soldiers" at the door were actually a couple of kids from the local ROTC program and they were out selling door to door to support their program. I did not know them, but I suspect they were two high school kids and the guy in uniform at the car at the end of the driveway was simply their ride to sell whatever they were selling. My dad didn't really like door to door sales. But I remember him standing there talking with those guys for several minutes. I think he even bought whatever they were selling. But, I do remember him saying when they were finished, "maybe you guys shouldn't wear your dress uniforms when you are going door to door during a time of war." I couldn't agree more! He knew disaster was averted for our family, but there were also no guarantees for the future.

I have thought about that day hundreds of times over the years. As the war has continued on in the middle east, I have thought about the thousands of families that received a visit from the "notification officer". Always while just going on about their lives doing what they can to support their service member from afar. Just like that an entire branch of a family tree has been altered. I have thought many times about those moms and dads and husbands and wives that have received that devastating news. I had one small glimpse at the fear of that visit, but truly cannot comprehend the way my family would have been impacted if we got a visit from someone else.

Fortunately, in my family, we have several veterans that we honor on Veteran's Day. Also, just as fortunately, we do not have anyone in my immediate family that never made it home from a deployment.

"I am an American fighting in the forces which guard my country and our way of life. I am prepared to give my life in their defense." -- Article One of the Code of Conduct for members of the armed forces of the United States.

It is one thing to say the statement above. It is entirely different to have lived it and have paid the ultimate sacrifice. My prayers are with those families, and brothers and sisters in arms, that have been impacted by the the death of a service member. Peace to you all this Memorial Day.

Our Journey with CBD

Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure. As I always say, "it is what it is."

Five or six years ago Elise was having a really rough spell with seizures. Honestly, there have been so many rough spells I couldn't really tell you how long ago it was. But I do know that I called my brother one afternoon and said, "What are you doing this weekend? You want to go with me to Colorado?" Prior to the CBD craze, there was a company in Colorado that was one of the first to make CBD oil started by the Stanley brothers. They were approached by a desperate mom who thought that marijuana could have a positive impact on her daughter's quality of life. The little girl's name was Charlotte Figi and she and her family are thought to be the catalyst that started the movement for CBD treatment of seizures. Their family experienced good success with the CBD oil made by the Stanley brothers which they eventually named "Charlotte's Web". You can still buy this today. Sadly, Charlotte died in April of 2020 from what was suspected to be COVID-19.

When I made that call to my brother 5-6 years ago he was instantly skeptical. In his line of work there were A LOT of people being arrested in Kansas for bringing marijuana back to Kansas. But I didn't want marijuana, I wanted Charlotte's Web! At that time, and still a great deal today, there is quite a bit of gray area in the law about CBD. At that time, you could be arrested for bringing it across state lines, and CBD was not available in many stores like it is now. In the end we decided it was too risky for our family. I was not willing to risk being arrested and them taking Elise away from our family. You can look it up. There are a lot of instances of that sort of thing in the last 10 years. I am thankful that much of this has changed.

Fast forward to about three years ago and the FDA approved a CBD oil named "Epidiolex". With that FDA approval came regulation of the quality of this product and also insurance assistance! I was on the phone within days of it becoming legal trying to get Elise an appointment. When we met with our neurologist he told us that getting Epidiolex was VERY difficult and getting approved for it was nearly impossible. The only way we were going to get approved was if Elise was deemed to have Lennox-Gastaut syndrome. That was not something we had ever heard of before. "There is no consensus in the medical literature on the exact definition of Lennox-Gastaut syndrome. Generally, three findings are necessary for the diagnosis: multiple generalized seizure types; a slow spike-and-wave pattern (less than 2.5 Hz) on EEG; and cognitive dysfunction." (source raredisease.org)

We knew that Elise had multiple generalized seizure types. She was experiencing those every day. We also knew she had cognitive dysfunction. That was pretty obvious to all that encountered her. A simple EEG scan showed without a doubt that she had a slow spike-and-wave pattern. And like that, we were approved for the FDA approved drug Epidiolex! All of my prayers had been answered and a "cure" was just around the corner. Well, if you have followed our family at all over the last many years you know that was not the case.

Just like with all new anti-epileptic drugs, the CBD was great right away! In only a matter of days we started to see improvement in her seizures. There was some tweaking of the amount we gave her and some adjustments to other medications and she was doing pretty well. The seizures were not gone, but they were far improved. It was more hope than I could recall in the few years prior. Then, everybody's friend puberty came into our lives. Let's just say that puberty and epilepsy don't play nicely with each other. From what I understand of girls, this change in hormones is a doozy for the average female teenager. For someone with epilepsy it is horrible. Maybe I'll write more about that in the future.

I have received more questions in the past month about some of the conversations going on in the state house of Kansas where they have been debating medical marijuana and its approval. Everyone wants to know my opinion. As I have been telling all that have asked me, I really don't know what is going on. Once Elise was able to get on the FDA approved drug, I knew I personally didn't have to fight that fight any longer. However, I do know that it is a fight that deserves to be had. But, I don't have the capacity to do it right now. I'll leave it to those that are most affected. 

Like all anti-epileptic drugs, Epidiolex has been found to be successful at eliminating seizures in about 33% of patients, found to reduce seizures in 33% of patience and have little to no impact on seizures in the remaining 33% of patients. We are in the "found to reduce seizures" group. It has not been a miracle drug, it certainly did not bring a cure with it, but it has brought on some improvement. There are currently more "good" seizure days than there are "bad" seizure days. But, there are rarely ever seizure free days.

In the end, CBD for Elise is one more tool to try and treat a debilitating condition. CBD has little known side effects which makes its use very attractive to many. The one thing I like about this FDA approved version is that it is regulated. All the other CBD products that we can find in the general public are not regulated. It is the wild west in CBD land. Manufactures can claim whatever they would like to claim and do not have to provide evidence. The products that you find could have trace amounts or no true CBD at all. To me that leads to way too much false hope and disappointment. I don't know if CBD is right for everyone, but I do know what it has done for my daughter. I'm always glad to talk about it to anyone that asks.

It's Always the Little Things

 

My mom passed away a little more than 10 years ago. Time flies for sure. I think about her a lot. There aren't many days where something doesn't trigger a memory or a thought about a time from my childhood. I guess that is a blessing of getting older.

During most of my childhood my mom worked for the Kansas Social and Rehabilitation Services (SRS) now known in our state as the Department of Children and Families. She was an 8-5 worker. Often she was leaving the house a little before me in the morning and she got home after I did at the end of the school day. If she had to take me to an afternoon appointment, she might take me back to her office while she worked the final hour or 2 of her day after the appointment. She would generally set me up in an empty cubicle to work on homework, draw/color or keep myself occupied in some way. One of those days she set me up in the break room where I could spend the last hour or so of the day. 

While sitting in that room, the vending machines caught my eye. We had junk food around our house, but neither of my parents were soda/pop drinkers. We just didn't have it around. I had seen the commercials for all of the usual brand names, but there was one drink in there that I was not familiar with. Always curious, I asked if I could try a bottle of Squirt. To my surprise, I loved it! Who knew that a "grapefruit soda" would actually be great!

When I moved up to junior high school, the school was located only a little over a block away from my mom's office. On days when I didn't have practice (which was rare), I would generally spend the last hour of the day at her office. It was not a daily occurrence, but I got to enjoy Squirt more and more over the years. It has become increasingly hard to find over the years, and I quit drinking soda about seven years ago myself. But, every now and then I have something.

Yesterday I stopped in the convenience store on my way to pick up pizza for dinner. Thinking about my mom throughout the day, I just had a hankering for a Squirt! They only had two left, but I was glad there was one in the cooler. I thought about my mom as I drank it. I thought about her making space for me in the midst of her busy work days. I thought about her parading me around her office each time I came in so she could "introduce" me for the 100th time to her coworkers individually. Each time telling them that I was her "baby". Even as a 20+ year old college kid that was 6+ inches taller than she was. She was always proud.

It is a random childhood memory I know. There is nothing of significance attached to a single event involving Squirt soda. But, each time I see it I think of my mom. Each time I drink it I think of her office and those days of my childhood. Mother's Day is not the same when your mom is no longer with you. There are lots of people that come through to fill in the gaps, but there will always be a space that my momma held. 

Happy Mother's Day to my mom in heaven, and to my many friends that are mothers. Remember it is the little things that your kids will remember 30 years from now.