Kjursten Is 12!

Birthdays have abounded lately… In late May I turned 30 and a week after that my mother turned 62 although she still manages to look decades younger than her real age. Our nephew just turned 2 years old a couple of weeks ago and we found a very cute (and probably annoying) toy and card to send him but didn’t get to actually visit him this year. My uncle Chip turned 62 and retired, and I think my other uncle Rick had a birthday too. One of my nieces is officially a tween. And we had birthdays for Will, his mom, his sister, and his brother. Am I missing anyone? Probably.

In late August, my oldest niece, Kjursten, turned 12. She celebrated with an Alice In Wonderland themed tea party. I have to confess, I may have looked forward to this more than she did. I made a sad attempt at creating a giant queen-of-hearts playing card. I really should have known that red glitter glue would drip as it dried no matter how stable it looked when I went to bed.

At my parents’ house there is a big mystery tree in the middle of the field. We all love it and they setup a long table underneath it with cute chairs, heart-shaped balloons, a ton of mismatched teapots and teacups with saucers, and an Absolem blue butterfly hanging overhead.

Kjursten's Party Guests

Felix showed up as the cheshire cat. He doesn’t grin, but he also has never closed his mouth in all of his 14 years, so I guess it’s similar.

Since it was about a million degrees out there they served Shirley Temples in the teacups instead of hot tea (thank God). Lots of children showed up in costume, but by the party’s end the heat drove some of them to switch out to normal clothes and no makeup.

It was a really cute party. Kjursten got lots of gifts including a  Nook. I think all the kids enjoyed it and possibly even the parents. The teacups and saucers were given to the guests as party favors when they left which I thought was a really great idea.

The party itself didn’t exactly convince us to have children, but we managed to not flee from the party guests either.

Kjursten's Cake

Most guests were served cute little square cakes labeled “Eat Me” but  Shannon also surprised Kjursten with a really cute topsy-turvy birthday  cake.

Somehow Kjursten found a perfect Alice-y dress for the party, and my youngest niece, Haley, put together a Mad Hatter sort of outfit.

My personal bias has nothing to do with the fact that they were both gorgeous.

We didn’t know most of the adults there as they were generally friends from their home-schooling co-op, but everyone seemed really sweet. Somehow my parents had created an adults’ table out of a slice of an ancient tree that must’ve been at least 5 feet across.

All in all, everything looked picturesque.

Haley As A Mad Hatter

My fingers are crossed that in January Haley will want a birthday party with the same theme so that I can redeem myself with a better giant Queen Of Hearts card. Hey, you try doing that in 2 evenings on a big piece of foam core with shaky hands and see how well it turns out.

Plus, hot tea (or hot chocolate) would be really nice in January versus August. Especially hot chocolate.

It’s so hard for me to believe how much they’re both growing up.

Of course, in addition to the Alice party, Aunt Judy also had a cookout at her lake house on Labor Day for both Kjursten and for Will. It was a fantastic day – especially since I somehow convinced my Uncle Rick to stand still while I soaked him with a water gun….

Oz Bookmark

For Will’s 31st birthday, we also had an amazing family dinner at my aunt’s house later and a lunch and movie with his parents over his birthday weekend.

He finally got some really nice headphones for work from my family (and they really are great). His parents were finally able to give him a set of beautiful reproduction hardcover Oz Books that they had been hiding since last March.

I covertly came up with the least-girly Oz-themed bookmark for him possible and I think it turned out nicely. I shouldn’t have been surprised that about 99% of all “Oz” charms are ruby slippers.

He also got to spend a ton of time with our friends Matt and Laura working on (I’m not joking here) a stormtrooper helmet for a costume. When all is said and done, he may just be one of those guys who goes around to children’s hospitals dressed as stormtroopers to somehow cheer them up. As a child I took things to seriously and probably would’ve thought we were being invaded and tried to organize everyone to fight back against them. I was a gullible, gullible child.

Anyway, the costumes are coming along great so far and I think/hope he had a great birthday even though I had to work weekends all month leaving him mostly to himself..

PS. The Double Chocolate Devotion ice-cream cupcakes at Cold Stone Creamery are second only to the carrot cake my aunt and uncle made.

Will’s birthday is just a week and a half before his mom’s. While we took her out, her evening was interrupted with some bad news. Grandma Byrd, who has just had radiation and was soon to undergo chemotherapy had fallen and broken her ankle in 3 places, requiring surgery.

We’re still waiting for the surgery to occur — the doctors say that it can’t be done yet due to swelling. However, something along the line caused her to have some heart issues requiring her to have a pacemaker installed. Will and his dad managed to make it down to Camden to see her before and after the surgery which went very well.

By all accounts she is still her optimistic, cheery, good-spirited self. Hopefully she’ll recover from this quickly so that her ankle surgery can be completed soon. We’re all anxious for her chemo to start so that her cancer can stay in remission.

Vlad's Portrait At UVS

Will’s birthday also coincided with a bittersweet phone call from Upstate Veterinary Specialists. Before he passed away this time last year, Vlad had received cancer treatment there for a very long time. We can’t recommend them highly enough.

After Vlad’s death, they requested some photos of him and a few weeks ago called to tell us there is now a framed portrait of him in the exam room he used most often.

It took awhile for us to get to the point where we could go look at it, but it’s nice that it’s there. He visited so often that he had started to think of the place as his own territory. He’d like that it’s now permanently marked with his name and face.

Birthdays really are always a little bittersweet anyway. Here’s hoping they get sweeter every year

Tysabri : A picture is worth $6900!

My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.

Last night I trekked down to the basement of a branch of the AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.

In my opinion, it is a questionable ethical choice for a neurologist to invite his patients to a deceptively named seminar to be pitched to by a drug rep with only negative statements about alternatives and without providing a forum for the other MS DMD manufacturers to respond to allegations leveraged by the doctor and rep or to the questions posed by the attendees.

Tysabri is a relatively new drug, and I doubt my neurologist has more than a few patients on it. This neurologist does not specialize in MS but still drew what appeared to be at least 40 Medicare patients all on Tysabri out on a Wednesday night to wander around a hospital until they found the basement conference room. He said he organized the meeting (I wasn’t aware he had organized it until it had started) to eliminate some questions floating around. In other words, to get his Medicare patients to shut up about taking “medication holidays” and switching from Tysabri.

When we showed up, we were asked to fill out additional paperwork for government records. This raises another question – did taxpayer money go to fund this virtual sales pitch? It seems as though this doctor just got Tysabri to put together a thing for all his medicare patients so he could get them in a room together and tell them there is no hope on any drug other than Tysabri.

The meeting started with him saying no one can tell you what drug to take, but the message that followed was very different. Essentially, the message was that interferons and betaseron are bad and don’t work and that the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms and that people just like to get high. We were all but promised that people don’t die from PML and that MS patients no longer have any attacks once they’re on Tysabri.

Following the doctor/patient bullying session, the sales rep came over to give me his expert medical advice. The whole event left me seething. If I decide to take the risk and go on Tysabri it isn’t going to be the result of the 3 questionable men running the show last night. PML is a scary thing and no one should be mocked for fearing it. The statistics presented last night (if you can trust them) are that only about 1/4 of people on Tysabri who develop PML will die from it, but the rest will be left with permanent disability ranging from mild to the need for life support. 1/1000 Tysabri users will develop PML and your chance of developing it increases with use.

None of our options for Disease Modifying Drugs are great. They all have drawbacks. Rebif is only supposed to reduce my relapses by 30% and no one can say what the last 18 months would have been like if I had not been on it. I have less options for neurologists than if I lived in a more metropolitan area, but I now know another doctor that has made it to my never in a million years list.

I understand that pharmaceutical companies are businesses expecting to make money. Sometimes they fail spectacularly in creating a drug and future drug prices make up for it. Sometimes they are spectacularly successful, but it is still incredibly expensive to develop the drug and prices are affected by that. Even so, when Rebif representatives call me they want to know how my health is. They don’t want me to die from liver failure just so that they can sell more Rebif.

I have nothing against Tysabri. I may even have to switch to it soon.

I have been on Rebif for over a year, but I’ve had several attacks (although I don’t think I’ve had any new lesions). According to the sales reps there, Tysabri doesn’t help prevent MS attacks following viral infections, although he was adamant that if I had an MS attack for any reason on Rebif that it’s not controlled and I should switch to Tysabri. With Rebif, sometimes the injection pain is terrible and sometimes I hardly feel it. The real issue at hand is liver function. I’m borderline and monitoring this is becoming increasingly difficult.

As of 2010 my insurance company, Cigna, has decided that blood tests ordered by a neurologist do not follow normal coverage guidelines and must come out of my deductible. Therefore, one simple blood test for liver function cost me nearly $400. I’m not sure I know anyone who is willing to spend $1600 a year on blood tests if they can avoid it. There were years in college when that’s all I spent on rent!

If my liver function deteriorates and I decide to shell out another $400 to find this out, then my options are Copaxone and Tysabri. After last night, I’m leaning toward Copaxone, daily injections and all.

Interferon injections are more than unpleasant.

I am so glad I make a habit of reading BBC News daily as US news agencies frequently skim over important things in favor of the shocking or violent. Today they published a story about new oral multiple sclerosis treatments that are likely to be available in England in 2011. As someone whose liver does not particularly like Interferon and is afraid of the risk of death from Tysabri infusions this might be a godsend. Since interferons are not available as generics (they contain living organisms and are exempt from status that would let them ever become generic) this could open inexpensive and more successful treatment options to a host of people who have no option but to live with the effects of the disease untreated. The full article and link to it are pasted below, but here is the basic information you want:

• The oral drugs in question are Fingolimod and Cladribine
• The drugs are considerably more effective at reducing relapses than current available treatments
• The drugs may increase your chances of herpes and cancer

Trials spark hope of pill for MS

Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.

Drug licences have been applied for and the MS Society said it was “great news” for people with MS – current treatments involve injections or infusions.

The trials of the drugs each involved 1,000 people in over 18 countries, the New England Journal of Medicine says.

Cladribine and Fingolimod, which come as tablets, cut relapse rates by 50-60% over two years compared with placebos.

Fingolimod was also tested against the widely used injection, beta interferon 1a. The trial showed the new drug was twice as effective in reducing the number of relapses over a year.

“ The evidence is now there and we will be working with the relevant authorities to make sure those who will benefit can get access ”

- Dr Doug Brown, Biomedical Research Manager at the MS Society