Bad year...go away

>> Thursday, May 26, 2016

I haven't blogged for a very long time.

Because Dad died.

In December he came for Christmas, by January he had a cancer diagnosis and began chemo and was dead mid-March. Our world turned upside down. Again. I miss him more than I have ever missed anyone before. He was a great man. A great man that everyone knew but no one ever knew. That helped everyone yet no one helped him because he wouldn't ask. He was a quiet man with a loud voice, at times. And he loved his children, grandchildren and great grandchildren. My heart is broken still and while Dad was dying...

Bug got worse. He developed gagging episodes. We talked to his Doctor and suspected new seizure types but he eventually stopped responding to rescue meds. Rescue meds at triple the dose still did not work. It was a very rough time. So we had another option for the cause of the gagging and we decided to treat him with Zantac. It helped. Nearly immediately. And his nightly seizures seemed to stop. For almost a week we had no gagging and only four seizures.

Until today.

Today he had 4 seizures in 4 hours. And it made me miss my Dad even more. Bug is better now, seemingly happy and energetic, but for how long? I hate waiting for that show to drop.


All In.

>> Friday, January 29, 2016

What do you do when you hear of an injustice?

Bug is doing well, he is happy and playful and not having more than 2 seizures in any given day and almost ALWAYS sleep dependant. No really big ugly tonic/clonics so we are pretty pleased. He also saw his new Doctor.

And I warned him about us, about how we are tenacious but do not require hand-holding, how we are always researching but also ruling out before we present an idea. He was cool with it and we were cool with him. We are working on getting Bug going with IVIg again, which makes me excited and sick at the same time. Bug gets so sick after the treatment but then he doesn't seize so is it worth it? We will see how that goes but we expect it to go well, even with the puking that may follow.

So what of this injustice?

In 2006 the Utah State Legislature passed SB8: Care of Students with Diabetes in School. It passed all committees unanimously and then both the Senate and the House. It is a smart bill, it is a good bill that was supported universally. We took this bill and changed Glucagon to Doctor-Prescribed Rescue Medication to ensure that students with epilepsy can now get blanket access to their medications no matter in what Utah District they reside.

And no one will touch it.

Now, we have other avenues we are using to ensure that the student with a Health Care Plan gets the medications they need, and we have great hope that will help, but there is ONE thing that makes me shake with anger.

The bill that is CURRENTLY sitting in rules that is a bad bill, is an admitted bad bill by its own sponsor. What do you do when you hear: I know it's not ADA compliant and there will be a lawsuit and it will cost millions of dollars and a decade of time but if that what has to happen then that's what has to happen. What do you do when you hear that the student with diabetes gets their medication but the student with epilepsy should 'wait for EMS to come because it's not like they know what is happening while they are seizing'? Yes, that is a DIRECT quote, darn near verbatim. Made by a 'professional' tasked with ensuring the safety of these children.  A 'professional' in a position to exert great pressure on anyone daring to support an effort to make this right, to stand in support of the ADA.

What do you do when you hear that YOUR child is NOT as important as the Doctor Group getting what they want finally at the expense of children? This same group supported SB8, and didn't support Charlee's Law. It seems they don't like children with epilepsy, that they have something against children having seizures being helped in a timely manner and receiving an education. There is no other conclusion to draw. If you have allergies or diabetes then we see and recognize your need but if you have epilepsy you will have to sue us to get the same services.

It's sickening and I won't take it anymore. I am giving my notice, I am ALL IN.


What is Seen and Unseen.

>> Sunday, December 27, 2015

This last week has been rough, not for Bug. Bug has been doing well. Averaging less than 2 seizures a day still, even with getting sick, this is great! He is smiling and engaged, following simple directions and he is playful. Playful in a way he was when he was very young. He has that: Oh yea? Look about him.

I will ask him to sit down and he will give me a wry little smile as if to say: Make me. If I force him to sit down so I can change him, it's a battle. If I smile back and tease him, he sits down. Tell me, is he yanking my chain or what?

So, what has been the rough part? Watching my father struggle with his...whatever it is. We know what is there: two masses where his stomach and his upper intestine meet and 'cancer' cells in his lymph nodes. They found the one mass a month ago and biopsied it. It was benign. They did NOT operate to take it out. Why? It 'seemed' to be responding to antibiotics. Seemed to, until last week that is. Then, the symptoms started up again and he went back to the Doctor. The week before Christmas. Oy. We know what that means: No action unless absolutely required. Sadly, we have seen that first hand with injuries before Christmas. It's as if the world stops and the misery continues unaided. It says: here have some pills to mask the pain, sorry if it makes you puke, take some more of these pills to help counteract the others. And sorry, neither one of them will remove the problem causing the symptoms, we will address that in a couple of weeks...have a good Christmas.

But, this time, they found another mass. He now has two. Two tumors. Having an additional intrusion in his stomach makes eating, sleeping, walking, and sitting unpleasant. Difficult. This makes life mostly miserable. Instead of staying home, the Doctor told him: Why NOT travel and spend time with your family? And he did. He toughed it out and made the airplane ride 1300 miles with one layover. He's my hero.

There have been joys, and there has been watching Dad be silently miserable for days. After spending 13 years watching our silent little boy go about his life, I have learned a thing or two about body language and a thing or two about what can be happening based on that body language. Dad's body language says: I hate life. But his mind and his mouth say: I'm ok, sorry to be a bother. As if. I re-assure him that it's not a bother, in any way, to love him and to help him. I get him drinks, ask him if he needs anything and he responds with the same thing: Don't go out of your way. I told him that it's OK for him to take it easy, to be miserable for a bit and to need help. I told him that we will be sure to take care of that causing all of his pain and misery as soon as we can, and until that can happen, he gets special treatment. I watch him hide so his pain is not our pain. His misery is not intruding on our Christmas. All I see is my Dad, being my Dad and needing to know he is a big part of our family and we are always here for him.

And so I asked him:

Would you ever consider Medical Marijuana?

What I expected to hear, I did not hear. I heard instead: Yes, I would.

I went into the bathroom and cried. I cried because he really would benefit greatly with just this ONE medicine. Medical Grade Cannabis would help with EVERYTHING he has going on. And that is FACT. NO ONE disputes that Medical Cannabis helps with nausea, would help increase his appetite, and helps shrink certain tumors. With this ONE medicine he could have a greatly improved quality of life and he could enjoy his grandchildren at Christmas. The toddlers who shriek with delight at the lights on the houses, the presents under the tree and taking pictures of Grandpa. He smiles for her, for his little granddaughter with the glowing red hair, who says: Smile! He sits on the floor and plays trains with his little grandson, while they both make train sounds...whoot whoot...chugga, chugga, chugga. I watch him pause, to gather his strength, which is lessened because he can't eat well, somedays he can't eat anything because of the pain and nausea. But even on those days he still smiles with his Grandchildren.

I have watched this play out every day since he came to stay with us the day before Christmas. He starts his day with Zofran and Hydrocodone, if he forgets the Zofran, he will throw up the Hydrocodone. Then he won't want to eat and he won't want to 'bother' anyone. All I can see is that he could have had Cannabis a month ago and been in a different place. Proven fact he would have been doing better with at least the pain and the eating even if it hadn't shrunk the tumor.

I sat in the bathroom and cried, as I have so many times the last two years. I have watched parent's bury their children, I have attended funerals of parents that have died too young, and I have watched 'broken' people be made whole.  I thought: it's my proximity to this reality of life among death, that makes Cannabis such an easy treatment option for me. I am in the trenches, I am talking to people wanting to die, and speaking with them months later living life after adding Cannabis to their treatment plan. It's this caring for the people that most would rather overlook that makes it so easy for me to see that there is NO decision here. It's a simple thing: if it helps, let it help, let these people suffer no longer. Those children you are worried about, the ones that want to hide from their lives in the drugs they ingest, they will NOT be made worse, but my Dad will be able to enjoy his Grandchildren.  You are telling me, and the rest of the world that MY Father, the man who fought for his country, who worked 3 jobs for his family and was a 44 year federal employee is not as important as your teenage drug user? Something is very wrong with this reasoning.

The decision to be made is not about drug use, it's about how best to ensure that we are helping those people that DESERVE help, those people who ARE contributing members of society and are dying while you cry tears for what MIGHT happen with NO proof that it WILL happen. Are you ignoring what is happening now as you sit far away and pass judgement on whose life is worth saving and who should die in pain? This, is all see. Because I have put myself in the position to see it, I open myself up to the pain of helping those that need help. And so, there is no decision for me. You make sure men and women like my Dad get the best medicine for what ails them. What I have seen, makes this an easy decision. Maybe that's the difference: what I choose to see.


The upheaval of Christmas

>> Sunday, December 20, 2015

14 seizures in 18 days...not a bad average. Last night threw it off a little, 2 in 3 hours. :( But a restful night and he is getting sick, so we would expect at least 10. Holding my breath for the rest of the day.

Working on the KBG Foundation is very daunting and yet, has the potential to be very rewarding for a number of people. 60+ in fact.

I downloaded the abstracts for all 43 PubMed research papers and as I was reading through them, I got sad, and happy, and sad again and slipped into the: remember when he was typical?

This holiday season has been exceptionally brutal on that front. Not sure why. Maybe it started with a video Glenn found of the kids opening and playing with the Christmas presents and each other. I watched Bug tugging on Taylor and her squealing with delight. He would tickle her and let her get away, only to go grab her again. She loved it. We loved it. We were that happy, normal family. One boy, one girl and clueless.

Maybe it started with me listening to Ava and Aiden getting better at speaking, at swearing and being adorable and me...always looking for what may signal something is amiss.

It's the bane of having an oldest child with a different, more complex, medical need. Especially one that, seemingly sprang from nowhere. One year he was eating his birthday cake with a fork, very carefully, with little to no mess and then next...he wouldn't even look at the cake. Or his presents. Or his sister. Or me.

Every Christmas, I torture myself and think that maybe this is year he WILL open his presents again. Maybe this is the year he will hand people their own presents with a smile. I think MAYBE this is the year for....a Christmas miracle.

And then Christmas morning arrives, the littles gleefully jump up and down at their treasured presents (for hopefully at least a week or two) and then I go get dressed and cry. Yep, I admit it. Every Christmas since he was 5. I will try not to that this Christmas, I will try to keep my eyes on the joy of the children, the family, and Bug. I will try. I guess, that would be my Christmas miracle, the only one it seems I will get a shot at for the next few years.

Don't get me wrong, I love watching all of my children enjoying the magic of Christmas, and in the moment, it is all about their excitement, their happiness at watching people open the gifts they picked out for them, not just what they received. There are a lot of laughs. It's just that ever-constant ache at missing my boy still, the ache I haven't ever truly gotten over it seems.



What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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