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change, children with heart disease, children's loss, chronically ill children, emotion, kid's medication, letter to my daughter, MS symptoms

"It’s Just Not Fair!"

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To my daughter,

I’m sure every parent feels like they hear “It’s just not fair!” from their kids a thousand times a year.  The hard part is when I find myself agreeing.

“Honey, you have no idea how much I agree.  No seven year old should have to take as many meds as you do first thing in the morning or in the evening before bed.  Then again, no young kid should ever have to live through all you’ve made it through or fear you will go through.  Try to remember you are the miracle.  What life gives is some times unfair, but what you do from that point on, is on you.  Take the meds.  I know it’s unfair, but do you want to be miserable?”

Saying all of this leaves unsaid your need to go through it all while in the process of  losing so much of the life you have known from visits with Blue a child you heard reunited with a biological family he feared… to your therapists with whom you took 4 months to open up… to your best friends (leaving for 2 years in a month)…With all of this on your shoulders, you begin a new school year.  Yes, life is unfair some times.

Maybe it’s because I had these thoughts, but for the life of me I just couldn’t get you to take your meds this morning.  Forty five minutes of silence (ah golden…if only the others complied too), stubborn refusal, deal making and finally deal breaking.

I get it, Dear.
Believe me!
I get it.

As much as anyone in the house, I get it.  Sadly the cocktail of meds is the best we have for your heart, emotional, and colon issues.  For what it is worth, I take my own cocktail of meds.  Your most common complaint is “You just don’t understand me!”  When you says this this, I almost always find myself wondering if you will mean it more or less as a teen.

Then I think how little I want my family to understand my symptoms and how different we are in this.  You long for understanding and seem to despair when nobody does.  I fear my family will understand because I don’t think they can without going through my ringer of symptoms in the worst moments on bad days.  I could never wish understanding on my family or any whom I love.

I do understand the original sentiment though.

It’s just not fair…and through it all, I am amazed at your will to give.  When you are down on days you have to take meds you just do not want, your biggest fit was reserved for not being able to give a gift to your friend leaving at the end of the month. When your biggest tantrum was a mere 20 minutes over having to wait a day to give her a gift you knew she would like, a gift to remember you for the next two years until back in America…that’s when I realized.

I have so much to learn from my kids.  Sometimes, there are things worth a good fuss.  Waiting till tomorrow seems an eternity to make happy someone about whom we care. After all, who knows what tomorrow may bring.

Love,
Dad

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MS, MS cognitive function, MS symptoms, pumpkin, red leaf branch, roses, Tysabri

80th Tysabri Infusion – What Happens When We Go Beyond the Studies?

Tomorrow afternoon, I will have my 80th infusion of Tysabri, a drug taken by infusion every 28 days to slow the progression of my MS.  For the past 2 years, I’ve been beyond the time period for which there is published data from any peer reviewed studies.  Heck, I just saw data released for likelihood of getting PML in your 6th year on Tysabri released in July.  This isn’t the most useful information as I go for infusion number 80, but I figure I will hear more about the 7th year in July next year.

Going through the garage today, J found some emails back and forth with my neurologist from back in my first year after being diagnosed.  Sometimes, it’s useful to see where I was to understand how much better I am now.  I was emailing about my massive headaches, coordination problems, neck sensitivity keeping me from wearing tee-shirts, and swallowing problems.  So with my following flare only two months away putting me in the hospital, this was actually a pretty close look at my life prior to MS.  I was dropping oatmeal in the cafeteria, unable to run, gagging with tee-shirts and any dry food, and miserable with headaches.  It was not my finest year.

Now, I am working full time, running, going to the gym, writing by choice, and generally in a much better spot.  I attribute much of this to Tysabri, and reading back how I felt before makes the odds of PML less concerning.  PML is one of the biggest risks when taking Tysabri as it leads to more disability or death.  Only people who have been exposed to the JC virus (60 percent of people in the U.S. have been) are at risk for PML.  I am in the 60 percent.  Still, when I started Tysabri, my wife and I agreed, “Give us 5 good years over 30 crappy ones.”  Eighty infusions into this treatment, I’ll re-sign the same agreement. 

This isn’t to say there has been no progression.  I am slower than I once was, and it feels like more than just age.  My ability to multi-task has taken a beating too, but all I have to do is look back to see a glimpse of what could have been.

Speaking of what could have been and may still be, I recently ran across mention of a study about cognitive decline in MS patients over 30 years.  http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-decline-over-30-years.html

As I read through it, all I could think about was interns syndrome where psychology and medical school students become convinced they have every symptom they read about.  I think I have some of the symptoms in terms of executive functioning and processing speed, but hopefully I still fall in the normal range.  The study does argue for treating MS aggressively to halt progression.  To date, Tysabri is still the gold standard for aggressive treatment of MS.

On the cool tangent side, we have a spot by our door where two rose bushes grow incredibly fast.  For years, I have told anyone who comments on them to feel free to cut any bloom they want because its replacement will arrive in a few days.  The bushes grow so fast we are always having to cut them back to clear a way to our front door.  We don’t fertilize them or anything like that, but we have thought of removing them.  We just can’t get rid of something which blooms nicely with no work on our part.

Last Halloween, O threw some pumpkin seeds from his the carving of Jack-o-lantern down off the front porch.  We thought nothing of it.  How many kids have spit seeds from various fruits?  I’ve never seen anything come of it until this pumpkin plant.  We’ve cut it back once already this summer, but the ground around the rose bushes most have some sort of magic.  I think Charlie Brown will be coming to our pumpkin patch next.  Maybe it just goes to show, one should be careful where one plants their seed (a lesson our son will need in a few years)….here’s what the plant looks like now:

Of course, I find the pumpkin plant to be the second most interesting plant in our yard right now.  At the beginning of this post, I had a picture I took looking up at a tree in our back yard.  I want to know why one of the patches of leaves is so bright red in amongst so many other branches of green leaves?  Magic?  Ours is a strange house some days. 

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