Just when we start to feel good about where we are headed with Kaden’s treatment, we have to go see genetics. Today we had one of those appointments that we could do without. We met with Kaden’s genetics doctor today and the entire appointment was doom and gloom. It’s a vicious cycle that we can never seem to break. Upbeat and hopeful at one appointment only to be brought back down at the next.
I’ve learned over the last few years that you cannot take every doctor’s opinion as gospel. Today, the genetics doctor gave us several updates regarding Kaden’s care. First. The medicine that they put him on last summer that is supposed to stop or even reverse the affects of a mitochondrial crisis is probably ineffective. So we are now taking off that medication. That’s actually not bad, one less thing Kaden has to suffer through twice a day.
Second. There have been advances in how they understand the mutation that affects Kaden. It’s all very scientific but the gist is that Miki and the other three kids will all likely have this mutation. However, in Kaden there is a much higher concentration of cells that are affected. That is the reason he has had damage to his brain and Miki and the other three have no effects. This does mean it will be important to get the other kids tested just to know where they stand. This disease can appear at any stage of life if the level of cells affected is high. Boy, I can’t wait for the anxiety of awaiting those test results.
Third, and this is not news to us. Kaden’s disease is progressive. Meaning it is likely to advance and cause further damage to his brain and possibly other systems in his body. Yeah, thanks for the reminder! This is the one that obviously sets us spinning, especially Miki. The one thing that we hold onto is the possibility that Kaden will not have another episode that does further damage. With only six known cases in the world there is no way to know if and when he will have further complications. My philosophy is “Why dwell on the negative.”
That’s what fires me up about the genetics doctors. Every time we see genetics there is a new drug, or a new method, or some knew insight that in a year from now they back off from or completely reverse their opinion on. FRUSTRATING! What I learned today is that, at this time, there is just no way to know what lies ahead for Kaden. All we can do is keep plugging away, work hard to keep him improving, and enjoy the time we have together.
Nothing in life is certain. No one knows what tomorrow brings. Right now there is no cure for Kaden’s disease, but that doesn’t mean there won’t be one in the future. Genetics is a young science and I think we have to remember that on days like today. I think I’ve come to terms with the fact that Kaden’s disease may progress, but it serves no purpose for me to sulk about it and it certainly doesn’t help Kaden. Miki has a much harder time coming to grips with Kaden’s disease being progressive. Days like today are so difficult. It’s like being slapped in the face.
Well, I’ve decided I’m not gonna take it. I refuse, we refuse, to give up the hope that Kaden can overcome this disease. We’ve heard the same doom and gloom speech so many times in the last 5 years. When Kaden first went to the hospital with infantile spasms (seizures) at 7 months old, they told us there was only a 5% chance that he would come out of it. Three days later he beat it and not a seizure since. They told us he would have cognitive issues from the damage to his brain. He’s in Kindergarten and doing great.
I say bring it on. Kaden has battled his whole life. He’s faced and defeated challenges that I would have never believed possible. You know, I hear a lot of people talk about faith. Faith in God. Faith in religion. I’ve never been an overly religious person and in the past I’ve yearned to find my faith. Well, I have found my faith and it lies in my son and in our family. The faith that I have found keeps me believing he will beat this disease. He’s “The Battler” and he will overcome!
Hey Quebe. Why can't doctors be more positive?? Kaden is the happiest little guy and he deserves some breaks. But, like you said, he will overcome this. I love all of you guys very much. Wen
Grandma Finnestad says “hi” Kaden. I'll bring you a cookie the next time I come to visit Danielle and Ryan. Love to you all.
Hi Kaden and Dad,
I found your site today and just thought I would share that I am battling dystonia and mitochondrial disease too. I also have a son who will be 6 next month so you guys are about the same age. I hope that you are feeling ok today. You can read more about me on my site at http://www.caringbridge.org/visit/jenelle