Monthly Archives: December 2017

HoliDAZE

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Anyone else exhausted? I keep looking at the calendar to see what day it is and almost hoping that this holiDAZE season is over. Between the cookies and the wine, I’m in much need of some New Years resolutions and looking forward to getting started.

Shame on me. Three more days and I need to enjoy every minute of it!

Our holiday got off to a rocky start. My in-laws arrived for our Torrey Christmas celebration on the 22nd, and by early morning on the 23rd both Jack and I were vomiting. After cleaning up a stinky mess (thank you PopPop and Sue) they escaped from  our house to meet the family elsewhere – no need to spread the germs around. We sent them out the door with the food we had been preparing for days. If I hadn’t felt so terrible I would have felt REALLY terrible. Luckily we managed to avoid the hospital (the stomach flu often requires an ER visit for JAckO) and by the next day we were on the mend.

We’ve been celebrating every since!

Lots of festivities with family and friends and lots of time being lazy around the fireplace. Except for the tummy issues, it’s been great AND IT’S NOT OVER. New Years Eve is tomorrow before reality finally sets in.

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2018 is a big year for our family with Anna heading off to school in the fall. Johns Hopkins University is lucky to have her and we are thrilled that she is headed to a school that feels like home to us. Dan may have received a JHU diploma, but I spent a good part of my college years in Charles Village pretending to be a Blue Jay. As hard as it will be to drop our girl off in August, at least it feels familiar. AND we all know that we will be finding any excuse to drive down for a visit;) Sorry Banana . . .

The adjustment will be difficult, but we will find a new rhythm. The house will be quieter, but we will figure it out. That’s what we do. We figure things out.

Until then, I’m going to work on keeping my New Years resolutions and enjoy our time together.

Here’s my list:
1.     Not just to pay for Weight Watchers, but to FOLLOW Weight Watchers (the stomach flu did help me drop a few pounds, but it’s not a great diet plan)
2.     Limit my vino intake – I’m too old for hangovers
3.     Encourage Jack to use his iPad. We need to get him talking before Anna leaves
4.     Up my yoga to two days a week . . . maybe three                                                             5.     Continue sharing THIS is ALD – please contact me if you are willing to share your story jctorrey@mac.com                                                                                                                                  6.     Start my next book                                                                                                                         7.     Move to Baltimore;)

Wishing everyone a Happy New Year!!!! 2018 is going to be amazing!!!

Love, Jess

 

THIS is ALD # 5 — Mason

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We are busy celebrating Anna’s big news and preparing for the HoliDAZE, but wanted to take some time to introduce you to another ALD champion, Mason.

I met Mason’s mother, Tina, this fall and she agreed to share a bit of their ALD story. Tina is a remarkable mother and, I’ve not met Mason in person, but I’ve fallen in love with his smile.

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THIS is ALD #5 — Mason

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        Mason was the best baby.  He developed all milestones at or before the age he should.  He was riding a bike without training wheels at 3.    We had no concerns with his development until second grade.  He had a hard time with multiple step directions and with math (common core).  He would have a concept and then it would be gone. He would bring his math papers home and I would erase them and give it to him to practice.  He didn’t remember ever seeing these papers. 
        Mason was diagnosed with Adrenoluekodystrophy (ALD) in April of 2016.  He was 8. We were told there was really nothing that could be done.  We have an awesome support system and everyone started researching and found the team in Minnesota (University of Minnesota Pediatric Blood and Marrow Transplant Program is a leading program for treating ALD) .  We made our first trip to Minnesota in May where they decided Mason was a candidate for a bone marrow transplant.  His Loes score (the scoring system to evaluate the evolvement of X-ALD) was on the high side, but Mason’s doctors said he was compensating very well with what the disease was doing to his brain.  They were hopeful.  We were so scared but this was the first time someone gave us hope. 
        Mason had his bone marrow transplant on July 11th, 2016.  We spent 30 days in the hospital and then we had to be in the area for 3 months (some hospitals release transplant patients to rehab centers/other local facilities once they have reached a certain milestone. In Mason’s case it was to a Ronald McDonald House near the hospital).  By this time, he lost a lot of vision, hearing and processing skills.  When we left the hospital, he was in a wheelchair and couldn’t see.  Even then he had goals…goal 1 was to get rid of his NJ tube (feeding tube) and goal 2 was to be home for his birthday. 
        They discharged us to go home on October 19th (his birthday is October 24th) and he was NJ tube free! 

        Mason is an incredible fighter.  He told a therapist when asked about how he felt about his vision loss that he’s not going to let it get him down.  That’s the kind of kid he is.  He is a very friendly guy and loves to tell jokes and make people laugh.  He does get frustrated with things he use to be able to do that he struggles with now, but he usually has a smile on his face. He is currently back in his school which he loves.  He kind of regressed a little with social skills since he couldn’t be around kids his age and was very scared around them.  Once he got back in school, he gained a lot of his confidence back.  He is learning Braille and the use of the white cane for mobility.  After stopping a few of his medicines, he got some of his vision back.  He can see and read but at a slower pace. We are so blessed, grateful and amazed by his progress.  We had no clue this disease even existed.  Awareness is so important.

(I’ve added a few details to explain terms that the non-ALD reader might not understand – Jess)

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Thank you Tina for sharing this piece. Mason’s story is similar to Jack’s in that there was not an early diagnosis. It’s important for everyone to remember how hard it is to diagnose ALD – why newborn screening is so vital to changing the future of this disease. Luckily, Mason had a successful transplant and is doing quite well. Life is complicated for him, but he seems to have the same great attitude and electric smile as JackO.

Love, Jess

 

Two-Armed Sister Clutch

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You’ve heard from me for ten years. Now, it’s Anna’s turn. When it came time for her to write her college essay I was excited to help, but like all things academic, she insisted on doing it on her own.

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        I have to hold his torso carefully so that he can’t bite me. For years, as my brother has gotten stronger, my technique has evolved from a simple shoulder hold into the now perfect “Two-Armed Sister Clutch.” My dad takes care of his head to keep it propped up—after all, the neck is the most important part. After ten minutes of very cautiously carving away at his beard, the world’s brightest smile emerges from his newly exposed face. I’ve just shaved my nineteen-year-old brother for the third time this week; my favorite chore with my favorite person.
        A sharp automatic razor and Jack—that’s my brother—make for a very interesting endeavor. But despite the chaos of the project, it always gets me thinking clearly. I think about the disease that forced its way into Jack’s brain ten years ago and made him this dependent on me, and about the fact it has been TEN years. I think about who he was before his disease—my typical big brother, goofy and in love with life. I think about who he is now—my silent and disabled big brother, goofy and in love with life. And finally, I think about who I am, and who his disease has made ME.
        Shaving my brother is a difficult task. I start off by trimming the top layer of the every-so-gnarly hairs. The first layer of Jack’s story is one very long word (the first word with more than six letters that I ever learned): Adrenoleukodystrophy (ALD). That is the neurodegenerative disease that turned my family from one straight out of a J. Crew catalog to the very quirky, “special” family that we are today. I was six, Jack eight, when he was diagnosed with ALD and his brain function slowly unraveled. Suddenly, my brother’s voice wasn’t around to fill up my house with jokes and curiosity. Suddenly, I had to be the athlete of the family…and the social butterfly… and the nerd. And now, a decade later, I am a hop skip and a jump away from being a professional groomer, too.
        After I trim Jack’s beard, its time to crank the razor up and dig down through all the brush, rounding the jawline and inching in to each crevice. Shedding that hair makes Jack look so presentable,… so professional… so normal. I get flashes of Jack Torrey as an adult (Doctor? Lawyer? Artist?), walking the streets of a big city, wife and kids by his side, living a normal life. I see myself meeting him for a bagel and talking about our careers, our friends, or our families. Sometimes I just picture us talking. It has been ten years since Jack last spoke.
        Luckily, my feeling sorry for myself is quickly interrupted by the most amazing laugh to ever exist. The disease that stole Jack’s words and independence did not manage to steal his laughter. I look at him and see what that sweat-inducing work out really uncovered: a giant, radiating smile. I let go of him and he wanders around the kitchen, slowly making his way back to me, tongue out and eyebrows raised, to give the best hug any sister has ever gotten from their big brother. That is Jack’s way of saying thank you.
        I’ll never have a typical sibling to show me the ropes of life and gossip with when I’m older, but Ill always have Jack. I’ll have his smile to tell me to always work as hard as I can. I’ll always have his laugh to encourage me to give back to other people and other families. I’ll always have his hugs after a lacrosse game or job interview gone wrong. And, I’ll always have an escape when I want to think about these things all over again—after all, that boy could always use a shave.

Anna Cappello Torrey
Johns Hopkins University Class of 2022 (we just got the news!!)

 

Love, Proud Mom

 

 

 

THIS is ALD #4 – Jon

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“When you hear hoofbeats, think of horses not zebras”

It’s a quote by a professor at the University of Maryland School of Medicine in the 1940s. A reminder to his students that, when searching for a diagnosis, not to think of the obscure until you can rule out the likeliest possibilities. I will never forget hearing it for the first time when a pile of medical students came into Jack’s room at Columbia Presbyterian Morgan Stanleys Children’s Hospital ten years ago. One of the students tapped the young man next to him and whispered, “Dude – THIS is a zebra!”

If Jack is a zebra, then Jon is a unicorn, with purple and cyan stripes. I met him this fall at an ALD event and I kept finding myself staring at him across the table. He’s in his mid-twenties, has his degree from the Milwaukee School of Engineering, is a comedian, and has ALD.

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THIS is ALD #4 – Jon

        This posting on Smiles and Duct Tape might have a different tone than most personal ALD stories. First off, I was diagnosed with ALD at the age of 1 due to the late diagnosis of my brother at age 6. It’s a common story. One that many of us have heard before, but did you catch what was odd? Maybe you did? I did, mainly because I’m the one writing this. There it is again.

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        The story keeps going with a bone marrow transplant at the age of 6, still a pretty common age range for those who are familiar with ALD. The transplant was at Minnesota which is synonymous with ALD. I came home after the transplant, and lived a normal life. Give up yet? I, me, the one writing the article had the bone marrow transplant. After hearing everything that happens to some boys with this terrible disease, I sometimes forget just how amazing this, THIS, is.
        It may even come more to a surprise that the journey started in 1992, when I was born. ALD would hit the silver screen a few months later with the movie Lorenzo’s Oil. Six years later, and an incredibly experimental treatment lead and here we are. So this article will take a different turn than any other ALD article and I’ll share with you everything I’ve done since the transplant. Everything, that is now achievable, by any other boy who is prescreened.
        As far back as I can remember, I’ve always wanted to be an engineer. Love designing ideas in my Inventor’s Notebook and building with Legos. Even during my transplant I was building Lego kits that were 12 years old and up. I was 6 at the time. It kept me busy. Models surrounded my hospital and Ronald McDonald House rooms. The passion for engineering continued after the transplant, as I excelled in math and science classes. Getting straight A’s in grammar school while being active in Boy Scouts. Scouting let me explore many different subjects, experiences, and knowledge which I still used today. In High School, I enrolled in Honors Math and Science classes. Doing my best to continue my streak of mostly A’s with the occasional B. I had the opportunity to take a few AP classes and a college level chemistry course which helped ready me for college. Furthermore, after class, I joined the Theatre Club and found joy in performing and speaking on stage. Fell in love with it and did as many plays as I could. Boy Scouts became a large part of my High School career. I served on Summer Camp staff for 3 summers and came to earn my Eagle Scout. I was selected to be a part of the Order of the Arrow ( Boy Scouts National Honor Society). Eventually becoming the youth leader as Lodge Chief, giving service to all members in Waukesha County, WI.
        Before I even started High School, I knew I wanted to attend the Milwaukee School of Engineering. Everything in High School worked towards that goal, and my senior year, I received my acceptance letter, though I had a feeling I would. College was the best years of my life. I continued all my passions of math and science, except now it was set to 11. I kept up with theatre joining the MSOE Theatre Troupe. There I acted in 6 plays, and directed 2. But the best decision I made in college was joining Triangle Fraternity. It’ an engineering fraternity and I became best friends with all of them. I may have lost a brother, but gained 100s I know I can lean on. Still staying in touch with them and even helping me secure my after college job at Affiliated Engineering in Phoenix Arizona. Today, I design the HVAC systems for colleges campuses and health care facilities. It may not be the same as a doctor treated young boys with ALD, but the buildings I’m designing may someday find a cure for this disease. And I’m okay with that.

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I’ve read this piece a dozen times and each time I’m in awe of how little Jon references ALD. He’s just a kid who loved legos and the Boy Scouts and learning and building and theater, and friendships. ALD is part of Jon, but it’s way down on the list of things that define him.

Jon was a pioneer. Like the boys going though gene therapy now, in 1998 stem cell transplants for ALD were experimental. Jon’s family had already lost a son and chose to try something new to save Jon’s life. Not only did it work, but it worked before ALD took over. Honestly, meeting Jon you would not see any hints of our disease. It’s amazing. Inspiring. A little heartbreaking  — I can’t help but wonder about Jack and who he would have been had ALD not touched every single part of his life. It’s crazy how random this disease can be, BUT I’m thrilled that Jon has enjoyed such an incredible life and it’s just the beginning of his story!

Thank you Jon for sharing your ALD story. My dream is that, as the years and research move forward, your story will become the standard — boy gets diagnosed, boy gets treated, boy lives life.

Until then Jon — you are the ALD unicorn!

 

Love, Jess

 

THIS is ALD #3 – Dalton

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The response to THIS is ALD has been remarkable (If you missed post, check it out). I’ve spent much of the last week corresponding with people in the ALD community — hearing stories and sharing our own. It’s been emotional, but it does have me thinking that I’m onto something good.

I was working on a post about Goucher College and The Grateful Dead (including some marriage advice), but that’s going to have to wait. I have another ALD story about an amazing boy named Dalton.

THIS is ALD #3 — Dalton

I met Dalton’s mom, Jennifer Lindsey, in person this fall at an ALD symposium. I’d followed their ALD story since the beginning, and I was glad that I got to turn her from a stranger-friend to a friend. She is smart and loving and dedicated to the ALD community. As soon as I reached out to the ALD world asking for volunteers for THIS is ALD, she sent me a note. She agrees that the more people share, the brighter the ALD landscape will be.

Thank you Jennifer for your words.

        Dalton was a very laid back, easy going kid.  On a normal day, he wanted to wear jeans and a t-shirt.  In fact, if I ever had a polo or button-up shirt set out for him he automatically assumed it was picture day.  He kept his hair short, but did have a Mohawk a couple times, which he thought was awesome.  Dalton was a hot mess, but he was my mess.  One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever. 
        I always thought Dalton was destined to be a comedian.  He could always make you laugh, even if you didn’t want to.  Sometimes it was genuinely funny and other times it was just so downright stupid it was funny.  Even when he wasn’t trying to be funny at all, it just came naturally to him.  At times he didn’t know when to stop.  He just liked making people laugh so much that if it worked he would keep it up, which at times was just fine and other times could be so frustrating.  Like most kids, he didn’t have a filter, so there was no telling what was going to come out of his mouth.  Dalton was a very sweet, loving boy who was robbed of everything possible by this monster we call Adrenoleukodystrophy. 
        Dalton was diagnosed on July 13, 2016 with Adrenoleukodystrophy, a genetic metabolic disorder that attacks the myelin sheath of the neurons in the brain. It literally robs these boys of their vision, hearing, motor skills, mobility, speech, ability to swallow, and eventually leads to death. A bone marrow transplant can stop the progression of the disease if successful, but does not reverse the damage already done.
        He was a perfectly normal 10 year old boy before. We had no clue. The only reason we had an MRI was because he was having hearing issues in May, 2016. I was thinking it might either be a brain tumor or a processing disorder so we did the MRI to be on the safe side. Second worst day of our lives. At that point they sent us to Riley in Indy, who more or less gave us a death sentence. We were then several days later pointed in the direction of the University of Minnesota Masonic Children’s Hospital, where we spent almost 5 months.
     Dalton had his stem cell transplant on August 29, 2016 which went beautifully, but he contracted the Epstein Barr virus in October, had to undergo more chemotherapy, and then was diagnosed with acute grade 4 gut graft vs host disease around mid-November. They tried several treatments, which were unsuccessful, and he was sent home on his birthday, December 1. We were under home hospice care until December 13 when he passed. I believe with all of my heart that newborn screening and gene therapy would have saved Dalton’s life. 

 

Watching Jennifer’s Facebook feed over the last few weeks has been difficult. She has been reliving/reflecting/sharing (not sure of the right word, but it’s been both heartbreaking and beautiful). “See your memories” is a feature on Facebook that should be about fun memories of silly times over the years, but when you’ve lost someone, it can be upsetting. Jennifer’s Facebook page has been sharing the last few weeks of her son’s life as well as who he was before ALD crept into their lives. Dalton’s radiant smile before ALD is beautiful, and that is the boy that I chose to picture here. I love how Jennifer describes him, “One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever.” Sounds like an awesome boy!

Unfortunately, Dalton’s story is not uncommon for ALD. Stem cell transplants have profound risks and if the disease has escalated passed a certain point, many boys lose skills quickly during the process. And, like in Dalton’s case, a transplant can leave a person vulnerable to infection, rejection of the new cells and Graft vs Host Disease (where the new cells – the graft, attack the body – the host).

As Jennifer says, Dalton’s story might have been different if they had had the luxury of newborn screening for ALD and had had access to gene therapy. Newborn screening allows families to prepare and monitor their child’s health so that treatment is provided in a timely fashion. Gene therapy does have risks, but Graft vs Host disease and rejection is avoided. It’s a game changer for ALD.

For more about Dalton and his journey, check out: In the Blink of an Eye: Dalton’s ALD Journey

Thank you Jennifer for sharing Dalton’s ALD journey.

Love, Jess

Please contact me at jctorrey@mac.com if you are interested in sharing your ALD story for THIS is ALD.

THIS is ALD #2 — Sean

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The odds of winning the Powerball lottery are one in 175 million. The odds of being born with the Adrenoleukodystrophy gene are one in 17 thousand.

And yet, everyone has heard of the Powerball, while most people give me a funny look when I share Jack’s diagnosis.

My go-to response is, “It’s that disease from the movie Lorenzio’s Oil.”

When that doesn’t work, I say something like, “It’s a genetic disease that effects the adrenal gland and destroys the myelin in the brain. It’s worse when it starts advancing as a child. That’s what happened to Jack. Yes – he was totally fine until he was eight-years-old and then . . . well, he kinda fell apart. He did have a stem cell transplant and it stopped the disease from progressing, but he lost a lot during that time. He can’t speak anymore and needs help with just about everything – eating, bathing, getting dressed, even walking down the street. He can eat. He does need to be fed and he has a tube in his belly for hydration. Oh, and he also needs a whole lot of medicine to keep him going. Steroids for his Addison’s Disease – did I mention that his adrenal glad doesn’t work? THAT is pretty common with people with ALD. Not everyone, but most. Jack also needs medicine for his seizures. That’s another thing a lot of the boys deal with. I’m not sure about the men with AMN. AMN is what older men with the ALD mutation get — if they get anything. Some men seem fine. And, most women are fine, at least until they’re older. Then they seem to have trouble walking and with their bladder and bowels. Yea, I know that’s scary. I sure don’t want to deal with any of that. Good news is that my mom’s doing well and she has the mutation. Oh, but that doesn’t really mean anything. Not with ALD. ALD doesn’t seem to have a memory when it comes down a family line. Anyway, Jack has Adrenoleukodystrophy.”
As my description demonstrates, ALD doesn’t always look the same. As readers of Smiles and Duct Tape, you know Jack and you know Jack’s ALD, but, there are many phenotypes – Childhood Cerebral, Adolescent Cerebral, Adrenomyeloneuropathy (AMN), Adult Cerebral, Addison Disease only, Carrier’s Syndrome and the lucky few who are completely asymptomatic. There are also several treatments (no cures): dietary therapies, transplant, gene therapy, treatment for adrenal insufficiency. I could show you charts and explain all the science surrounding the disease, but instead I’m going to introduce you to ALD through it’s people. It will be a chance to get to know ALD — our not-so-rare disease.
A couple of times a month I’m going to share a story about someone (or a whole family) with our disease. Don’t worry – you’re still stuck with me posting stories about JackO and our not-so-special family. THIS is ALD will be a little extra treat.
THIS is ALD #2
Sean Suppan
(Jack was #1)
One of my ALD stranger-friends (now friend) is Ellen Suppan. She and I met years ago when her son, Sean, was starting the transplant process. I remember getting off the phone with her almost breathless. Even though our family was two years ahead of them in the process, it was hard for me to imagine what they were going through. Their ALD journey seemed so much more complicated.
She shared their story with University of Minnesota Pediatric Blood and Marrow Transplantation Center in 2009. These are her words as Sean was going through transplant:
“In 2003, after a lot of doctor visits, we were told that my other son David
had ALD. He was 7. I had no family history, but it has to start somewhere.
Back then, there was nothing we could do for him. Within 3 months, he was
in a bedridden state, and then went to a vegetative state, and he was like that
for 4 years. David passed away in October 2006. We miss him but were
relieved he was no longer hurting.
Shortly after David’s diagnosis, I found out that we were expecting and later
learned I was carrying a boy. And yes, he carried the gene, but had a 50/50
chance of not developing symptoms. With Sean, we were very proactive. We
have known since he was born that he has ALD. When Sean was only 3, he
came down with a high fever and we did an MRI, and everything was clear.
We did another MRI 4 months later and there was a spot there. We were
shocked. David was 5 when this happened.
My main concern was to get Sean where he needed to be. There are good
hospitals. They have done a couple of transplants, but not as many as the
University of Minnesota. The most transplants for ALD have been done here,
pioneered here and they are still working on it.
The downside of going through the transplant is that the chemo may bring
on more advancement. It’s a no-win situation. If I don’t do anything, I have
seen the course it takes. But, we at least know that he will not get to the stage
that my other son had to endure for four years. We are thinking positive.
I am thankful and grateful that Dr. Orchard came up with this treatment. It is bittersweet for me. Back in 2003, they did not do transplants for symptomatic
kids like David. The progression with David was very cruel for a parent to
watch. We are doing for Sean what we could not do for David.
Don’t expect anything to be normal. It’s a new normal. It’s a new way of
doing things. Be ready. I always keep my gas tank half full, because I don’t
know when I’ll need to go to the hospital. Live in the moment. All the other
things will fit into place.”
What isn’t mentioned in this piece is that while the Suppan family was losing their son, David, in the fall of 2006, their daughter Ashling was diagnosed with AML Leukemia (she has just celebrated 11 years in remission). They were still mourning David as they went through treatment with Ashling and were diligently monitoring Sean. Then, as Ashling was enjoying life after her treatment, it was time for Sean’s transplant. Ellen shared with me that she missed her daughter’s high school graduation because she was in Minnesota with Sean recovering from his transplant. ALD often steals a lot from a family.
Eight years after our first correspondence, I finally had the pleasure of meeting Ellen, her husband David and Sean in person. I tried not to, but I couldn’t help but watch Sean closely and compare him to Jack. Sean has the same engaging bright smile and is eager to be part of the conversation. He is able to speak and to the untrained eye appears very typical. I did see a few hints of ALD, but needed to ask Ellen for specifics.
Ellen shared that following transplant they were most concerned about Sean’s vision, but gradually it seemed to improve. He does have difficulty processing new surroundings and has issues with his depth perception. Other challenges include short term memory problems and some behaviors like making odd noises, chewing on shirt collars (THAT is so Jack) and shrugging his head almost violently. He is able to feed himself, but needs help with other activities of daily living. Sean is currently in the seventh grade and moves between a special needs classroom and a few mainstream classes.

Overall Sean is doing great. The Suppan family is grateful that Sean was able to be monitored closely and received his transplant early. Ellen shared a note she received from his teacher. I think it says it all.

 

Hi Mrs. Suppan,
I wanted to share with you that Sean is doing terrific. I am so proud of him. Today he came up in front of the class and shared with him things he is thankful for. What an accomplishment for him – we appreciate him everyday and are thankful to know him. Happy Thanksgiving to you and your family.

 

“ . . . we appriciate him every day and are thankful to know him.” THAT is how I feel about Ellen. I hate ALD and the chaos it’s created in our families, but I am honored and grateful to have Ellen as a friend AND to have met Sean. Stay strong little man and I look forward to meeting you again soon – next time with JackO!!

 

Love, Jess

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THIS is ALD