Ten Years and Counting . . . Special Thanks to the Little Lady from Detroit

I’ve been trying to find the right words, but I’m at a loss. There are no words to really describe how we feel today. I’ll keep this post short and sweet.

Ten years ago we put our son’s life in the hands of doctors and donors and maybe even a higher power (I know, I know – I have a terrible relationship with God, but I’m working on it). Ten years ago we didn’t know of any boys who were ten years post transplant for ALD. We didn’t know if there was a chance that Jack would reach this milestone.

Jack has reached this day – HIS TENTH TRANSPLANT BIRTHDAY – and I fully expect he will exceed every dream we’ve ever had for him. He’s just that kind of kid. He’s a silent boy who speaks.

We had a party this weekend to celebrate our boy. We filled our yard with greasy food and many of Jacko’s favorite people. Jack spent the day hugging, and dancing and enjoying every second.

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Please take a moment today and think about our boy. Think about how amazing life can be.

Happy Birthday JackO!!!

Love, Jess

In honor of Jack’s TRANSPLANT BIRTHDAY we asked people to make donations to Boxes of Fun and Horizon High School. Over $2800 was raised for his school and have a HUGE pile of toys for the Boxes of Fun. Our duct tape is amazing!

 

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FYI – “The Little Lady from Detroit” was Jack’s donor;)

Ten years ago . . .

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2007

What were you doing ten years ago?

Ten years ago our family was in limbo. We had just been transferred from our local hospital to Columbia Presbyterian Morgan Stanley Children’s hospital in New York City. Our lives were standing still as we waited for doctors to figure out what was going on in Jack’s brain.

Seven days earlier, we had gone for an MRI so that we could rule out any significant neurological issues. We were told immediately following the “routine MRI” that it did not rule out anything. Instead, the MRI had confirmed that Jack had significant damage to his brain.

That was April 20th, 2007.

It would be ten days before we were ushered into a small conference room and introduced to the word Adrenoleukodystrophy. Those ten days were surreal.

Waiting is brutal. Although we tried to be optimistic, the doctors were not able to mask their concern. We knew that a diagnosis was coming and that it likely would be bad news. Jack was only eight-years-old and Dan and I both needed to play the role of calm parents, but in the stillness of night our fears would crawl out. There was very little sleeping for us during that time. The “unknown” causes the imagination to spin, often landing on the horrifying or the absurd.

We all know what happened. That we did get a terrible diagnosis and then lived through a nightmare before finding our way to a new life full of challenges. As we approach the tenth anniversary of Jack’s diagnosis and stem cell transplant (his other birthday), I can’t help but relive those days. I can’t help but remember where we were ten years ago. Who we were ten years ago. Bear with me as I spend the next month remembering and sharing.

Sharing has helped me survive the last ten years and reliving these memories is actually helping me to appreciate that we didn’t just survive that period, but we have moved incredibly far since that time. Of corse, I have my moments wondering what life would have looked like without Adrenoleukodystrophy crashing in, but mostly TODAY I am feeling grateful.

Jack survived. His life is complicated, but his quality of life is wonderful. He is happy and stable and manages to bring joy wherever he goes. Anna survived. She runs through life like she runs down a lacrosse field – determined and strong. I’m not exactly sure where she is headed, but her life is going to be extraordinary. Dan and I survived. We are not living the lives we imagined, but I can honestly say that we are closer now than we’ve ever been. I know it sounds cheesy, but he’s my best friend.

Our family has also managed to surround ourselves with friends who hold us up when we need it and encourage us to celebrate the good times (wine and dessert flow often). And, our extended family is incredible. We’ve just gotten to share time with both the Torreys and the Cappellos and we are all feeling incredibly blessed.

For a VERY unlucky family, we are really f*cking lucky;)

Ten years ago our family was living in limbo. Waiting for news that would forever change our lives. Today we are in control. Perhaps not able to control what tomorrow will bring, but in control over how we will face today — AND today is a great day!!

Love, Jess

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Today (not really today, but this year)

Michael and Hans (I mean, Pierre) Part 3

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Eight years ago our family hosted a party to celebrate Jack’s second transplant birthday. There was a cake and balloons and (like any good party) a table so that people could sign up for the Bone Marrow Registry. 79 people signed up that day. One was a friend of a friend, Michael Steiner. I’ve shared his story before, but it continues — here’s the update:

So I did the marrow (“Drill baby! Drill!”) donation back in September 2015. Then a few months after that I did the white blood cell donation (“Spin baby! Spin!”) for my cousin, … because we’re all cousins. #ScienceIsReal

I knew he was in Europe, but I guessed he was in Germany (biggest country, my dad is ethnically German… so odds were on Deutschland over all others.). But it turns out Hans, is not Hans; he’s Pierre. Yes, he’s in France. I was thinking I would call him Francois, but I can never be sure to spell that with i-o or o-i. Oy!

Anyway, I found out the France part because Be The Match called me again in December 2016 to do another white blood cell donation, but this time a nurse would jack me up with some filgrastim over 5 days before the “harvest”. The filgrastim would make my body over-produce the white blood cells so the machine can spin out a better dose for Pierre.

The procedure was set for February 1st (aka “February Fools’ Day”).

I didn’t have many side-effects from the filgrastim. Only some sleeplessness and a low fever because the body gets confused with all those white blood cells around. “What’s the matter? What’s with all the white blood cells? Are we sick? What the heck?” HA! I got to stay in a hotel in the city the night before the harvest because my appointment with the needles was at 7:30am.

Since white blood cells only last a few days, Pierre got the “booster pack” within 24 hours of the harvest. I thought that was pretty cool.

Unfortunately, I’m very unlikely to be able to help Pierre again, at least with regards to his Leukemia. My handler at Be The Match told me I’m “getting to old for this s**t.” (Roger Murtaugh – Lethal Weapon). But seriously, I can be in great shape, but I’m already 45, and my cells aren’t going to be helpful to Pierre after a certain age. (I imagine the bag of white blood cells arriving in France and them saying “Ça sent un vieil homme.” Don’t you love how “old” in French looks like “vile”?)

I probably won’t get an update on how Pierre is doing, and I don’t need one. I hope he hangs in there for a long time, but I know how it all ends!

A big merci beaucoup to Jesse Cappello Torrey who had that “swab party” those years ago.

Merci to you Michael!!!!

Love, Jess

Birthday love

 

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Today our family celebrates John Redmond Torrey’s 9th birthday. Yes. I know that Jack was born nearly 18 years ago,  on August 5th, 1998. But on May 30th each year, we celebrate the day that Jack was given life – again. Today is his “other birthday. “

Nine years ago, Jack was living at Morgan Stanley Children’s Hospital in NYC. He had been diagnosed with Adrenoleukodystrophy just one month earlier. Thanks to our team of amazing team of doctors and nurses, he received a stem cell transplant from an anonymous donor. The entire procedure took less than 15 minutes. In keeping with Jack’s relentless attitude and irrepressible spirit, we played Aretha Franklin and danced and laughed in his hospital room as the stem cells slowly dripped into his arm…. and eventually gave him a new life.

That was nine years ago. Now my son is a happy and healthy teenage boy. The same old Jack – just taller, and with more and more with facial hair. I am so so proud to be his father. And so thankful for every day that we have him in our lives.

Jack — I love you very much!

Love, Dad

Wandering through middle age

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Back from our trip, trying hard to hold tight to my mexican mood. It’s so much easier to define yourself as content and happy when your biggest worry for the day is where to go for lunch and whether you want a swedish or a deep tissue massage. I’m just hoping that my new outlook doesn’t fade as quickly as my tan.

My mood has improved dramatically since Dan and I went on our anniversary trip. Time alone with my husband in beautiful Tulum is just what I needed to bounce out of the hole I’d found myself in the last couple of months. Allowing others to take the reins also reminded me that we are not alone – we have people in our lives more than capable of helping out. Thanks Nonno, Mymom, Maria and Jeremy for holding down the fort.

During the quiet moments on the white sand beach, I had a lot of time to count my blessings and to contemplate what has been bothering me. The list is rather long, but the simple answer is CHANGE. We’re starting a new chapter. Anna is becoming increasingly independent and Jack too is growing up and requiring us to adjust – again. I need to prepare myself for this next stage so that I don’t get caught in another landslide. But how do I prepare? Making a plan is a good start, but that has me a little lost.

What/where/who/how do I want to be when I grow up?

I’d always thought that by 46 I would know who I was and would have all my ducks safely in a row. My life has taken some major detours, but I’m starting to realize that most people our age seem to be wrestling with similar feelings as they wander through middle age. I’ve been focusing so much on “poor me” that I hadn’t appreciated that most of my peers are going through similar issues. Knowing we are all going through this together makes me feel better.

The lives that we all envisioned rarely come to fruition. And, even if they do, they often look very different through older eyes. Besides, even if life took us just where we expected, we all have periods of change. Change can be exciting, but it can also be daunting.

Middle age comes with so many life changes. Preparing children to leave the nest or not (in the case of many special needs families and friends who didn’t have children). Career changes or the realization that projected careers never materialized. Grappling with how long to keep our homes full of memories but with taxes high enough to pay for a few European vacations a year. Whether or not to cover the gray or let nature take over.

All this crap is hard, but for me the realization that I’m not doing this alone is rather liberating. There’s safety in numbers. I’ll keep you all posted on any great ideas of how to soften the blow of middle age, but for now only one thing is for sure — Dan and I need to plan for more trips. There is something magic about having your feet in the sand.

 

the talking dream

I remember the first time I heard my voice on my father’s mini-tape recorder. I was about four, singing Itsy Bitsy Spider. It sounded so strange. He’d taped me just minutes before, but I still questioned if it was really me. Although we live in these modern times full of videos, I’ve managed to avoid them. Not even our wedding made it to VHS or DVD or HD or whatever they’re calling it today. So, imagine how I felt when I sat down and watched myself sharing my story,  The Talking Dream, at Listen to Your Mother.

A few comments:

1.) Bangs don’t translate well with overhead lights.
2.) My hands move in a way that makes me uncomfortable.
3.) I play with my wedding band obsessively.
4.) I’m not a pretty crier.
5.) All this, and I’m still proud.

Check out the rest of the cast — I shared the stage with a talented crew!
Love, Jess

happy birthday jackO!

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Day + 2922 (417 weeks/8 years/half of Jack’s life) . . .

Most of us have one birthday, but Jack likes to be different. He has two.

His first birthday marks the day he came into the world. Eight years later, Jack was born again (not in the Christian sense of the word – THAT he hasn’t done yet).

Eight years ago, we sat in room 505 at Columbia Presbyterian while doctors added a small bag of cells to Jack’s huge tower full of medication. It took less then 30 minutes for those cells to enter his veins. We watched and waited, while listening to music (Dan has a playlist for every occasion). It was remarkably uneventful, but it was the beginning of Jack’s life post-ALD.

Like so many life-altering moments, I remember every second of that day. I can’t tell you what I made for dinner last night, but I can tell you what I was wearing eight years ago and I still gag when I recall the smell of stem cells (who knew?). I also have that confusing feeling that it was just yesterday that we sat in that room, but I can’t really remember much before that day — as if our family started on May 30, 2007.

Eight years ago, if someone had sat me down and tried to describe what our lives would look like now, I would have strangled them. I was so sure that we would somehow return to lives that mirrored our lives before ALD took hold. It didn’t matter what I read or who I spoke to, all I could imagine was a family that looked like a family should. Now I know that families come in all sorts of different shapes and sizes, and that happiness is attainable under the most complicated of circumstances.

So, I’m glad I didn’t know. I would have been heartbroken and would have wasted time worrying that we couldn’t manage. Instead, we grew into our new lives and little by little have found a way to make it work. We are strong and happy and thriving. We celebrate Jack’s 8th Transplant Birthday today with plenty of smiles and grateful for all the duct tape that holds us together.

HAPPY BIRTHDAY JACKOOO!

Love, Jess