Tag Archives: TS Alliance

Traveling to the Novartis Blogging Conference for TSC

I haven’t blogged much over the last year, except to rage over my pet political issue, so imagine my surprise when I was invited to the Novartis Blogging Summit for TSC.

*Insert legal disclaimer here–While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.* They also gave me a box of kittens. No. I’m kidding. Only one lousy kitten.

Four other moms to kids with TSC were also there.

Tina of Captain Jacktastic, who I initially met around the time I started this blog through WordPress and later Facebook.

Heather who has written several pieces for Huffington Post, and I met for the first time last year in DC during the TS Alliance’s March on the Hill to continue funding for the Tuberous Sclerosis Complex Research Project.

Laurisa of Land of La, who was one of my early stalking victims when I was finally able to do TSC research for more than two minutes at a time without “breathing” into a paper bag.
IMG_8972 And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.

The day I left, Connor seemed to have a bit of cold and Chris thought he was coming down with it as well. This is called foreshadowing — but I’ll get into that later.

I was picked up at the Newark airport by a man holding a sign with my name. I am accustomed to such a lifestyle as I force my husband to stand in the driveway most days and greet me in this manner when I come home. It turned out Laurisa had shared my turbulent flight that wasn’t quite in a “luggage bins popping open” category, but definitely required gripping of the arm rests and the parents in front of me to intervene with their 10-year-old who was launching a panic. The driver whisked us to the Short Hills, New Jersey Hilton where I luxuriated briefly in the softest king bed ever then headed down to the hotel bar to meet the other ladies.

We had dinner with several Novartis employees and shared our stories so they could have insight on what it’s like to live day-to-day with TSC. For those that don’t know, Novartis produces Afinitor, a medication that can shrink certain types of tumors that occur in TSC. Connor, fortunately, does not have a need for this medication at this time, but it would be a likely course of treatment should he ever develop a SEGA in the brain or large AMLs in the kidneys.

It’s weird to sit and talk about your kid and TSC without having to give a bunch of background information, explaining what certain acronyms mean or why a particular medication might be preferable to another. They already know and they’ve already been there.

When dinner wrapped up at 8, we caught the train into NYC to meet another TSC mom who lives in the city.

Correction, four of us went. Tina’s no fool. She wasn’t about to let a king bed, personal hotel room and a long, luxurious shower without the door cracked listening for shenanigans pass her by.

We met fellow TSC mommy Naomi at Haymaker Bar, a few blocks from Grand Central Terminal, ordered drinks and appetizers and talked about some more acronyms that needed no defining.

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Heather revealed that Times Square was on her bucket list and since I was pretty much intent on spending every minute I could squeeze out of this 24-hour trip in NYC, I was fully supportive of her checking that item off. We trekked through the tourist mecca, which was hopping on this Friday night. As we passed by the Disney store, we were drawn inside by the sheer number of people inside at midnight. Apparently a large number of tourists venture all the way to New York and decide, as one day rolls into the next, that they simply MUST HAVE AN ELSA DOLL RIGHT NOW. It was amazing. And a little sad. But mostly amazing.

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We caught the train back to Short Hills where we bonded further as we almost spent the night in the station. The hotel didn’t offer much hope of a taxi and their shuttle service had stopped. Our first Uber driver was too stupid to find the train station. No we are not shopping at Trader Joe’s at 2 am. The second one found us, but appeared to have only been a licensed driver for a day or two. At any rate, we made it back to the hotel where it took me another hour to fall asleep, still high off neon and LED lighting (did you know that the Times Square district is the only district with a requirement for businesses to have illuminated signs and that there is a minimum, rather than maximum, lighting requirement)?

The next day was filled with discussions of TSC, diagnoses and, most importantly, what kind of resources would we have liked to have had when we received the diagnosis. We spoke of the fear of what was out there on the Internet and at least one person had been told to stick to TSAlliance.org and not to Google. Period. Novartis unveiled some new informational pamphlets for our feedback and said they are revamping their informational site.

There were some other resources they want to be sure the TSC community is aware of.

  1. The Afinitor $25 co-pay card. This only works with commercial insurance (not Medicaid). If your co-pay is more than $25, print this out and take it to the pharmacy.
  2. Afinitrac. This support program offers financial and educational support, deals with your insurance and provides other resources. Please note they are only allowed to offer it to patients who are using Afinitor on-label. If you are using it off-label (meaning for something it has not been officially FDA-approved for yet, like seizures or cognition) they are prohibited from providing this support.
  3.  Turbo & Scott. Previously the story book about a kid named Scott who has TSC was only available online, but it is now in print. It goes into a lot of detail about TSC in more kid-friendly terms. It’s a bit complex for younger kids or kids who are cognitively affected, but for older kids, siblings, or friends, it can be a great resource. There is also a comic book about a teenage Scott on a quest to meet others with TSC.

I was not required to share these resources or blog about the summit in order to attend, but I wanted to make sure people know about these resources as for many of us, the use of Afinitor (Everolimus) could very well be on the table one day, if it isn’t already.

I’m sad to say that I had to leave just before we wrapped up to catch my flight so I didn’t get to spend more time with my mommies, but perhaps my suggestion, as I exited, to do this again in Vegas will be heeded by Novartis 😉

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And so I headed home where I would soon learn that the cold was not a cold…but more about that in my next post. A full update on Connor to come and the reasons why I’ve dropped off the mommy blogging planet.

 

 

 

 

 

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Another milestone! And costume problems…

Last night Connor cruised the furniture for the first time! He took three side steps to move down the couch, and a little later, got up and did five in a row. I’m itching for him to walk! My back needs it for one. All his doctors concur that he’s right around the 27-pound mark, but apparently they all buy same defective brand of scale because I can tell you he weighs 80. There will be so many more places that we can go to fill our days. I mean, we have fun at the zoo and Tanglewood Farms, but it’s a bit of a work out. A few more months and I’ll be much more excited to receive invites to bouncy house parties because I won’t find myself facedown suffocating in the corner of a castle, being trampled by toddlers. We’ll probably go broke from me buying season passes to everything in a 50-mile radius.

Last week, Chris had to go to NYC for the day for a business meeting. He happened to stumble upon the taping of the Today Show — the last hour with Kathie and Hoda. They pre-tape Friday’s show on Thursday, and that is the episode you can see him wandering around the back, texting me to ask if he’s on TV and poking his head in to see what’s going on. It’s pretty funny. Here are some stills (yellow tie and briefcase strap criss-crossed):

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We had a busy weekend. Saturday, Chris and I made the day trip to Birmingham for the TS Alliance regional conference. I took this picture at the Alabama welcome center because it gave me the warm fuzzies.

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We got to hear about the latest in clinical studies, surgical techniques and dealing with schools and IEPs — having been on the other side of IEPs as a regular ed teacher, I dread the possibility Connor could need an IEP. Let’s say I’m just a little jaded in that area, having seen first hand what happens when the law requires schools to provide a “free and appropriate education” but doesn’t provide funding or support. Fingers crossed he won’t, but we have to be prepared for the possibilities. The reality is he will most likely start school with one, given his delays. It’s unlikely by pre-k that I won’t feel he needs one, but I can still hope that won’t always be the case. Only time will tell.

My parents got to spend the whole day with Connor from waking up until almost bed time. Everyone survived so I’m booking a trip to the Caribbean.

On Sunday, we met up with the Cruz’s and the Weathersby’s for Boo at the Zoo. We had two pirates, a monkey and a cow. The cow was SUPPOSED to be Cookie Monster, but the manufacturer and I have a serious difference of opinion on what constitutes a 2T. We had to make a last minute dash to Target on the way for a new costume, where we very nearly added a third pirate to our crew.

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I wasn’t really sure how the zoo would go with Connor, being that he doesn’t walk yet, and while he loves animals, I wasn’t confident that the distance between him and the zoo animals would intrigue him. For the most part I was right. But the one place I thought he’d be least interested was one of the best. He loved the aviary because every few minutes the birds would all swoop the enclosure together, which he found hilarious as they whirred past his head. He perked up again at the petting zoo, but getting him to look off into the distance to spot the gorillas and giraffes just wasn’t happening.

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Zoo Atlanta also put up a tent with a costumed dj, furry dancing animals and loud music. Babies first rave.

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This is what happens when you want a picture of all four boys together:

Where's David? Catch him!
Where’s David? Catch him!
Look at you? Ain't nobody got for that.
Look at you? Ain’t nobody got time for that.
Next time I'll bring duct tape.
Next time I’ll bring duct tape.

Afterward we picked up food and went back to eat at the Cruz’s where Connor continued his doggy guilt trip on us by expressing his extreme delight over their dog Bacchus. And it was super adorable when David, who is one day older and fully mobile, got down on his knees to crawl along with Connor.

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Forgetting Yourself…and Finding Yourself

Day 23 of Guest Blogging for TSC Awareness

By guest blogger Susan McBrine

Being a mom  is the hardest job any woman ever has. No one prepares you totally for the complete neediness of a baby, or the way you suddenly know for the rest of your life you will love this baby with a love you didn’t know you even knew how to give.

You are in awe of this feeling and overcome with joy every morning when you stagger sleepily into your baby’s room and see her tiny face light up when she sees you.

No one  can prepare  you for the absolute wave of grief that hits  you, however, when a few months later, a strange doctor tells you that  baby has tuberous sclerosis .

The baby you envisioned watching graduate from school, get married, become an adult… All those dreams of normalcy seem to vanish with two words spoken from a person you now want  to slam your fist into and call a liar! You ask why, why? And you are angry, sad, and finally determined to fight this disease. You also know that nothing will change the love you feel and nothing will stop you from getting this child the medical help she needs to live a happy life.

As the years go by , perhaps you have other children, perhaps your marriage fails or gets stronger, perhaps your friends you thought you had fade away from your life because your every waking minute is consumed with caring for the child who now has brain tubers, seizures, too many medications to count, kidney tumors, behavior problems, autism  and major developmental delay. Those friends have been replaced with, perhaps, other moms of a special needs children, who are  the only ones who understand your devotion to this special child. The child, who despite driving you mad several times a week,  is so endearing when she finally can say ” I love you ” and finally can interact and play with other children .

Your heart breaks for her every day and your heart celebrates every day at her slightest progress because it is a huge long-awaited accomplishment. You  stay awake at night wondering how you will pay for her medication, whether you are being a good enough mom to your other children, a good enough wife, a good enough teacher, worker; and you worry, most of all, if your child with TSC will live, have a quality of life , a future. And what will happen to her if something happens to you?

What you don’t worry about is yourself. You’ve forgotten to worry or even think about yourself most of the time because there is no time for you. Doctors’ appointments, IEPS, hospitalizations, blood tests, therapy appointments, more doctors’ appointments, medical tests, MRIs, EEGs, sonograms, surgeries, psych evaluations, teacher conferences, trips to pharmacies …

It seems endless and every few years another body part or organ pops up with a TSC symptom and you grieve all over again for the healthy  child you  dreamed of and you cry for the suffering  one you have now and love so much. The tears are always there just below the surface.. But so is the joy  that she has defied the doomsday prognosis, the life expectancy. And she has taught your other children compassion, kindness and tolerance. You are so proud of them and grateful they are healthy and normal.

You thank God for every day she lives and beats TSC and you thank Him for making you strong enough to raise her. One day you realize she has made you a better person! But your marriage may not have survived the strain because he was never really committed or never really dealt with his grief. It’s too late to wonder why. The marriage is over. It ends when you understand he isn’t capable of  standing by your side and never was.

Or your marriage and bond grows stronger, if you have the right  man, because of this special child.

Your child is now an adult with, perhaps, a child’s mind, and  you have spent your adult years in a career working with teens and children in regular and special education while raising your own and you realize you’ve  still forgotten yourself.

You’ve spent many hours explaining to friends, relatives, doctors, teachers and strangers what tuberous sclerosis is and helping other mothers  cope. And insisting to them that you are neither a saint nor a martyr for choosing to raise this child despite the many people who say,”I don’t know how you do it.” Sometimes they say that because they are secretly wondering if they could do it if it was their child. The answer is simple . You have no choice. Your child needs you.

One day you also realize that finding yourself will be the healthiest thing you can do. You meet and fall in love with a real man, just when you thought they didn’t exist (as I did) if your  first marriage has failed. Eventually all your children, except  your TSC child, leave home to successfully live their own lives. And then your worst fear comes true. TSC has won the battle. And in my case the following happened:

Your TSC child’s second kidney is failing after endless hospitalizations and medical complications, including a year with a feeding tube. Dialysis and transplant are considered, agonized over, and then your trusted pediatric neurologist and you make the decision that she would not tolerate either successfully, only prolonging her suffering. You can no longer care for her at home and work also, which you have to do, so you reluctantly, sadly, place her in a group home  with a nursing facility where she is surprisingly happy and social for a time. Meanwhile, you continue to work and travel two hours one way to visit her on weekends when you can get there.

About a year later she is facing complete and total kidney failure and you are facing hospice care for the child you fought and battled for 30 years to keep alive. Now you realize you have to allow her to die and end the suffering…it seems impossible to bear the grief  this time.

Even though you are finding happiness in life, your world is collapsing again because your baby, your first born special child is dying and you have to let her go after a lifetime of helping her to live. How does a mother endure this pain after you were chosen to learn all the lessons raising a special child has taught you? You lie awake at night wondering and  greiving all over again and you ask why? Why?

There are no answers…but you know after burying this child that the hardest thing a woman can do ever  is to be a mother and watch your child die.

Your other children continue to bring you great joy, pride and love in your life. You are so thankful you were able to experience the joy of raising other non-affected children to adulthood. Yet  you will always grieve for your special child and miss her unconditional love, total innocence and uncanny sense of humor in spite of all her suffering.

Yet you have found yourself finally…. Because you realize you were meant to be her mother to become the person you now are. This was my TSC journey and one typical of so many other TSC moms who have made similar journeys. But their journey will be more hopeful and less lonely because of the Tuberous Sclerosis Alliance. I hope all the moms find themselves because I know we all forgot ourselves for a time.
Global awareness has increased today. And there WILL  be a cure.

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