THIS is ALD #25 — Grady

Ten days ago I got a text from a dear friend from MA, “Watching the news on NBC – it’s about newborn screening for ALD.”

I stopped what I was doing, went to the computer and Googled — NBC, MA, ALD and this popped up.

CLICK HERE

I thought, What a great ALD story! I should reach out to this mom. Within a day, we found each other — ALD is a small world (and thanks to social media, it’s getting smaller every day). We exchanged notes on facebook, emailed back and forth, and then spoke on the phone. For me, it’s like talking to an old friend when I find another ALD mom. I asked her tons of questions and let her share and vent. Of corse, I also asked her to please let me share her family’s story on THIS is ALD.

THIS is ALD #25 — Grady

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I thought he had too much wax in his ears. That’s how this started, wax. My boys always have gross waxy ears, no matter how much I clean them. Pretty gross right? I thought Grady couldn’t hear me well because of waxy ears. 

So after about two weeks, I decided to bring Grady to his pediatrician. She checked and they were clear. We proceeded to do a hearing test. He passed. Gut punch #1. 

His pediatrician suggested we follow up with ENT. I asked if it could be neurological. She didn’t think so, everything else was perfect. About an hour after we got home, she called me saying, “You are not an alarmist with the kids, let’s see an ENT today”. 

She got us in and he passed most of the exams. Gut punch #2. I knew something bad was coming. My husband and I took Grady to Boston Children’s Hospital right from the ENT. I felt like we had to push to really get them to listen. Neuro came and did a consult. Grady’s so strong. A crazy NATURAL athlete. How could it be his brain? Physically he checked out perfect. Then, the doctor asked, “What is 3×4…” Grady said, “Football”. Now we were crying. Something was really wrong. 

They came back and said they felt he was fine to go home, and out came Mama Bear. We told them we did not feel comfortable bringing him home. Twice. We told them SOMETHING is wrong with our son. I begged to scan him then. Sobbing. They felt a scan could wait and would book it in the weeks to come. 

So we went home. Sick to our stomachs. 

The next morning I woke up, called the pediatrician, and told them that I was bringing Grady back to Children’s and I wasn’t leaving until they scanned him. Long story short, a few frustrating hours later, they did. Gut punch #3…….and the death of the “old me”

They told us that they believe that Grady had ALD. What the hell is ALD?!? I Googled it, alone in the “quiet room” after an ER doctor told me not to. Google was obviously lying because there was no WAY my football and basketball obsessed boy was going to die in 1-5 years — slowly deteriorating to vegetive state, to death. No way. Someone was was wrong, and they wanted me to call my husband and tell him this?? Part of me died then. 

We lived 5 days — well not lived, we walked around somehow and tried to take care of the kids, while in the back of our minds we were thinking about losing our son. Then, we met Dr Eichler and Catie Becker. Two angles who told us that we would not lose Grady. With a Loes score of 10, they felt that perhaps Grady might lose some hearing, some vision, he might have a change in his gait. We could handle anything as long as he was with us. With newfound strength we got ready to fight. 

We met angel #3 a short time after — Dr Christine Duncan at Dana Farber. Grady ended up with an amazing 10/10 unrelated bone marrow match right away. Grady’s brother Colin tested negative for ALD and everything went just so fast from there. 

Admitted to the hospital on 9/11/18 and met what came to be some new “family” members (his loving nurses) and chemo started the next day. Grady was a rockstar. Me, not so much – I dubbed myself “the neurotic mom in room 613” . He was transplanted 9/20/18.  Celebrated his 8th birthday on 10/2/18 and also started engrafting that same day. We were home 10/11/18.

The fear really set in when we got past transplant, but there was still this ALD we had to process. Every little thing Grady did I was so scared…is this progression?  He blinked 3 times more than he did 5 min ago….is this progression? Every single day that kid was outside throwing the football. Making one handed catches. Working out to get his strength back. I still panicked over everything, even though I was told by his NP, “If he is out there making one handed catches, you have no right to worry about progression “. 

I still did.

We were also trying to come to terms with some signs of ALD that presented post transplant, like an Auditory Processing Disorder. Grady can hear us, but he stuggles to understand language. Luckily – that’s his ONLY deficit. He is a miracle boy!

Other than not really looking like Grady from all the prednisone and stupid hairy cyclosporine, he is still the same Grady, but he is angry.  So angry, and rightfully so. Some days are better than others, but he is here and doing amazing. 

Grady’s follow up MRI was also a miracle. Not only was there no progression, but his lesion has also gotten smaller. They are not sure why, and have only seen this once before, but smaller. Miracle. We also found out that I am not a carrier. Grady spontaneously mutated. More crazy to add to our story. 

We still have a long road ahead of us. We have had a couple readmissions that seem to come with the BMT world, but he is doing amazing. There is hope – so much hope.  

This disease is awful, but if he has to have it, I’m glad to have found the people I have in this ALD community. The Smiths might be one small family, but we are joining the cause and going to help do big things!!!

#NBS #ALDawareness #toughtimesdontladttoughpeopledo #yougottabelieve 

💙

— Jillian

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Jillian is amazing. Without her determination to get answers, it would have taken weeks or months to get the proper diagnosis. If you have followed any THIS is ALD stories, you know how important an early diagnosis can be. I’m not actually sure of when (or if) Jillian sleeps, but Grady is one lucky kid to have her as a mom and the ALD community is lucky to have her on board. She’s only five months into this journey and already she’s determined to dive into sharing her family’s ALD story and raising awareness for our (not so rare — about 1/15,000) rare disease. Since she sent me this story, her family was on the news again. 

With the Super Bowl just days away, all you Patriots fans will love that Julian Edelman is a fan of Gradys — just like the rest of us!!

CLICK HERE

Jillian — Thank you for sharing your family’s story and we look forward to watching Grady’s progress as he moves on with his beautiful, sports-filled life.

Love, Jess

 

 

the future is bright(er)

A few times a year I have the opportunity to spend a couple of days in a room full of people who know what the letters ALD stand for and what it means to live with them in your home. This week I attended the Aidan Jack Seeger Foundation – ALD Standards of Care meeting. It was exciting to hear about the continued progress being made with newborn screening and the latest treatment options for this next generation of ALD boys. There’s not anything that will benefit Jack, but I hope in a small way, our boy (and his story) is helping the progress move forward.

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I know it’s not for everyone to sign up for juggling their real-life responsibilities to attend conferences highlighting the worst part of their life, but I never regret attending these meetings. I’d be lying if I said I understand all the medical talk, but the connections I’ve made over the years have been invaluable. I still get a little star-struck when I meet people that I’ve been following for years, but I’m always pleasantly surprised by how welcoming everyone is. These conferences are filled with doctors, researchers, and ALD parents who have become hard-core ALD advocates (trust me – I’ve done nothing compared to these folks). Everyone is always willing to answer questions and share their experiences. And, now there’s a new generation of ALD families recently diagnosed through newborn screening – they are the strongest people I’ve ever met. I’m not sure I would have been ready to dive in 12 years ago. 12 years ago ALD was a different disease.

12 years ago, when we first heard the word Adrenoleukodystrophy, a diagnosis usually meant that your son was already symptomatic – often too far along to treat. Even when you were lucky enough to find doctors willing to move forward with treatment, the outcomes (if successful) often lead to a new life, full of challenges. And, when you looked for other families for support or guidance, our community was hard to find. It was pre-Facebook and all that Goggle could tell us was horrific statistics and old information. Today, the ALD community is strong and the future is bright(er) and I want our family to be part of the future. I’ll keep attending any ALD conference I can get to, put on my fancy name tag, and enjoy some time with our ALD family.

For more information about ALD, please check out the Aidan Jack Seeger Foundation and ALD Connect.

Love, Jess

THIS is ALD #23 — Mason

Are there any GOOD ALD stories? I guess we need to define the word GOOD.

good
/ɡo͝od/
adjective
“a good quality of life”

 

Jack (THIS is ALD #1), as a GOOD ALD story. He’s happy and can walk and see and hear and laugh. Although his life is full of challenges, we’re grateful that he’s enjoying a wonderful quality of life. If you look through the previous 22 THIS is ALD stories we’ve shared, you will find other GOOD stories, but sadly ALD is not a disease known for GOOD stories. As Newborn Screening spreads across the country (the world), GOOD stories will take over. Until then, a determined family, curious doctors and a lot of luck needs to come together for GOOD to happen. Mason had all three.

 

THIS is ALD.jpgTHIS is ALD #23 — Mason

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Mason was born on March 19, 2011- completely healthy according to doctors. When he was 4 years old, he was admitted to the hospital for the first time. He had gotten sick out of nowhere — started vomiting and could not get out bed on his own. In the hospital, all the tests they ran were negative, so after a few nights we were sent home with no answers. They said it was just a virus.

Everything went back to normal for close to a year when the same thing happened, but this time with a fever. Mason started vomiting and became weak and dehydrated and refused to get out of bed. He was admitted to the hospital for a few days and again all the tests came back negative and we were sent home being told it was just a virus. Three to six months later, it happened again and then again in December, 2017. It was the forth time he was admitted to the hospital with similar symptoms. Luckily, that time an endocrinologist was asked to come see him. The doctor reviewed Mason’s charts and immediately ordered an adrenal test. Mason was diagnosed with adrenal insufficiency and put on hydrocortisone. Before we left the hospital, the endocrinologist mentioned the word “Adrenoluekodystrophy” (ALD), but didn’t give us many details. All he said was that Mason was not showing any signs of the disease (other than the adrenal insufficiency), but to be safe, he ordered an MRI to rule it out.

The MRI was scheduled for January 25, 2018. After Mason had his MRI, I started Googling ALD, and convinced myself he did not have it because we had no family history of the diseases and he was not showing any symptoms. His appointment with the neurologist to review his MRI was on February 19, 2018 and I was calm leading up the meeting. February 19th arrived, and we got the news I thought for sure we would never hear — Mason had ALD.

I broke down and was terrified that Mason would start showing signs of the disease quickly. Our neurologist called Dr. Lund at University of Minnesota Masonic Children’s Hospital (Dr Lund is a leader in ALD treatment). Within a couple of weeks we were heading to Minnesota for our consultation for a bone marrow transplant (BMT). We were there for a week and found out Mason’s LOES Score (a determination used to rate the severity of the progression of the disease – it ranges from 0-34) was between a 3 and 4 and he was a good candidate for a BMT.

Instead of starting the process right away, they sent us home to wait for insurance to approve the treatment. That was the longest and most stressful month of our lives. Waiting on our Michigan Medicaid to approve an out-of-state BMT that was considered a “trial or experiment” (BMT, if successful, stops the progression of the disease, but is not considered a cure). For a month, a day did not go by without me crying on the phone with the insurance company or the doctors in Minnesota.

 

At the beginning of April, we finally received approval from insurance and were told that our doctors found and 8 out of 8 cord blood match. Mason had his transplant on April 26, 2018 and it went better than doctors expected. We were discharged from the hospital only 12 days post transplant.

I know Mason’s story is a miracle and I have not heard many other ALD stories as positive as ours. We are very blessed to have had the transplant in time and that Mason continues to be symptom free (with the exception of adrenal insufficiency). Michigan does not do the ALD newborn screening yet, but will soon hopefully.

-Erica

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Reading Mason’s story gave me chills. My hope is that stories like his will be the new face of our disease. An early diagnose, treatment, followed by a healthy life.

I’m by no means saying that ALD will ever be an easy diagnosis. Even with the “luck” of having that endocrinologist being wise enough to test for adrenal insufficiency and then following up with the MRI which properly diagnosed Mason, his family faced a lot of challenges. Fighting with insurance companies, financial responsibilities connected to treatment/travel/etc, the pain/discomfort/agony of a transplant — all these things will never make ALD an easy diagnosis. Still, the future looks bright(er).

And, Mason’s smile is super bright!

Thank you Erica for sharing Mason’s ALD story.

Love, Jess

THIS is ALD #21 — Jack M.

I have known Kerry for many years through social media. We both have sons named Jack and we both know how ALD can effect every inch of every life in an entire family – even when it only takes over one body.

Thank you Kerry for sharing Jack’s story.

THIS is ALD — Jack M.

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Jack was 8-years-old when our family was at my older son’s boot camp graduation at Parris Island. Jack suffered what look like a seizure — months later we figured out it was caused by an adrenal crisis. He was taken from Parris Island to the hospital and then we took him home to Miami the next day. The doctors refused to test for anything specific, simply saying he had Epilepsy. It took several months, and lots of doctors, before Jack was diagnosed with ALD and adrenal insufficiency.

Although the doctors in Miami told us there was no hope, I put Jack on a plane and went to University of Minnesota Hospital (a leader in ALD research and treatment) to see if he would qualify for a bone marrow transplant. They agreed and Jack was transplanted using the precious cells from his brother, the Marine.

After transplant, Jack continued to decline because the cells needed time to get to where they were needed. I’ve homeschooled him his entire life and have been able to adapt all curriculum to where he is at any given time. It also has allowed us to be flexible while we continued to pursue other treatments for him. Over the next several years I took him to North Carolina to see a rare disease doctors and several other states for answers which I eventually figured out on my own. Jack’s disease finally stopped progressing 2 years post-transplant, and he was left requiring full-time care. I am his full-time caregiver. Respiratory issues and adrenal issues keep me on my feet.

ALD has not been the only complication our family has faced. We recently went through hurricane Irma and YES we are still fighting the insurance company to repair the house so we can safely live here. Three times over the last year I have had to travel to take care of my mother who has heart condition and breast cancer. All of this has been the worst case scenario — like the board game, except I don’t hold any cards. I just do whatever is needed at the moment. One step forward, two steps back. I try to just keep pushing forward. My Marine son says I would have made a great Marine — I have been through The Crucible and back.

Since my Jack’s diagnosis and transplant there have been 5 babies born in our family and one expected this July — my grandchildren. All of my grandchildren are healthy. Jack’s ALD was a spontaneous mutation (meaning it was not inherited). ALD is now part of the newborn screening panel in Florida. I often imagine if ALD had been part of the panel when Jack was born – so much of this pain could have been avoided.

So much has happened since ALD struck our family and it’s effected a lot of our lives. I have had children graduate from college numerous times and missed their graduations. I’ve missed grand babies being born. Everything is on the back burner while I care for my son 24/7. It’s also changed the lives of my seven other children. My 23-year-old is my constant help. My 29-year old Marine just receive his third degree from college in bio medical and he also runs a tutoring company that caters to Veterans and hopes to raise money for research to develop an auto injector (to administer steroids) for those with Addison’s Disease. All seven of Jack’s siblings have been contributing to ALD awareness. They have learned first hand how ALD can effect a family. My ex-husband has moved on since Jack’s diagnosis. He is remarried and started a new family and we have no contact. Another dirty side of the storm no one talks about. 

Jack is now 18. When Jack is doing well he has a good quality of life — bowling and baseball, he has even played soccer in his wheelchair. When he’s not well I count the moments and do everything I can to keep him out of the hospital and give him comfort. Sometimes I question putting him through chemo and transplant, but I know I tried and did everything possible at each step of our journey.  Jack is still here. He is still fighting and I will fight with him. I know the Lord has the last say. 

— Kerry

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Kerry is also a children’s book writer and has been a very active volunteer with political campaigns, adding to the bone marrow registry and raising awareness for ALD and newborn screening.

Thank you Kerry for sharing Jack’s story and helping the ALD community spread the word about our not-so-rare disease.

Get Swabbed

Eleven years ago we were told that Jack had Adrenoleukodystropy and that the only way to stop the progression of this hideous disease was a stem cell transplant (bone marrow transplant). Anna, who was 6-years-old at the time, would have been the best option, but she was not a match. Our doctors were forced to look on the bone marrow registry for a potential donor.

Imagine being told that the only chance of saving your child’s life is if a stranger is willing to make a donation.

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At the time I didn’t know much about stem cell donation. Online research did little to calm my nerves. At any given time, over 7,500 Americans are actively searching the national registry for an unrelated donor and only 2 % of our population is on the registry. And, what are the chances of finding a donor? Caucasian patients – 75%, hispanic patients 45% , asian patients – 40%, african-american patients – 25%, and multi-racial patients are faced with the worst odds. Over 3,000 people die each year because they can’t find a match.

Jack was lucky. Although there were no matches on the bone marrow registry, a stranger had donated their daughter’s cord blood (another option for a stem cell transplant) and Jack received those precious cells which stopped his disease and saved his life.

We’ve helped host many drives in the last eleven years and there have been at least three lives saved by spreading the word and helping people register. We are doing it again this weekend thanks to our friend, Elizabeth Sarkisian, and our local YMCA.

If you would like to learn more about bone marrow donation or would like to add yourself to the registry (and are between the ages of 18-55, not active military, in good general health, and over 105 pounds) please join us on Saturday 12pm-3pm at the YMCA in Maplewood.

Love, Jess

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Please keep in mind we are looking for people to register that are committed to donating if called. Otherwise there is false hope and wasted time for patients. Thank you!!!!!!

GOOD > BAD

Enough with the hard stuff – let’s celebrate!

A crazy few weeks around here and most of it has been WONDERFUL.

Last week, Jack and I had the honor of speaking at an event for CPNJ (the parent organization of Horizon High School). 150 employees were celebrating 5, 10, 15, and 20 years of service to CPNJ. We were asked to speak representing CPNJ families and sharing a bit about how their team has helped us. My nerves still cause me to jitter a bit when I speak publicly, but overall I think I’m doing a better job. And, looking out at a room full of so many people who have helped our boy, I felt extremely grateful. I did the majority of the speaking, but when Jack joined me on the stage, he really did steal the show. His smile is electric.

 

Then yesterday, we shared our story in a whole different way. Through Jack’s school, we were approached by a Taiwanese television station that is making a documentary about children with special needs and adaptive equipment. A large crew of people and cameras arrived bright an early to catch our morning routine (I took care of some early morning messiness before they arrived – THAT would have been a little TOO real). The crew followed JackO around throughout his entire day, and by the time they arrived back from school, they all seemed like old friends. It’s amazing the connections our silent boy is able to make. The documentary is following children with disabilities from four different countries, discussing different approaches cultures have towards the special needs community. It’s scheduled to air in Taiwan in the Fall. They promised to send us a copy. I can’t wait to see our boy on the screen (and to see if my need of highlights is distracting;-).

 

It’s not just our boy who has been getting some attention. Anna received a wonderful invitation last week. On Monday, Boxes of Fun is being recognized as a recipient of the Friends of Child Life Award at New York Presbyterian Morgan Stanley Children’s Hospital. We’ve been making Boxes of Fun for the children on the Bone Marrow Transplant floor at the hospital for eight years. Last year, Anna asked to take over and started a club at her school with her dear friend, Jane, to help raise money and fill the boxes. No surprise, they dove right in and have not only raised enough money to extend the program to Hackensack Hospital, but they have raised awareness for both Boxes of Fun and paying it forward. Kids these days . . .

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Our lives are complicated. Big things like fighting with Social Security and little things like Jack developing a habit of soiling his bed overnight. Some days I feel like we are dealing with more than our share of sh*t, but when I step away and look at the big picture, I am reminded that the good still outweighs the bad by a long shot.

I am beyond proud of both of our children. Each with such different lives. Each extraordinary.

 

Love, Jess

 

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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

May the force be with you.

IMG_4310Entertaining is one of our choice pastimes. Sometimes the cocktail hour is extended and dinner gets a little held up, but our guests never complain (at least not to our faces).

Dinner parties for eight are a favorite over here, but we’ve also enjoyed a few full houses — celebrating 40th birthdays, college reunions, etc. All good times, but only one party resulted in lives saved. Six years ago we hosted a party that we called Jack’s Bone Marrow Birthday Bash. It was just after Jack’s 2nd transplant birthday and right before his 11th traditional birthday. We made hundreds of sliders, had coolers of juice boxes next to a keg of beer, and my mother made a beautiful cake. The only price of admission was that you needed to walk through our front door and consider joining the Bone Marrow Registry.

Several of our friends helped manage our dinning room filled with information. We had the necessary paperwork and were ready to swab the cheek of anyone 18 or over. We didn’t put undo pressure on our guests, but we did remind people that Jack was celebrating his birthdays because of the kindest of a stranger. We registered 79 people that day.

Yesterday I got a note from a friend of a friend , Michael Steiner, who stopped by that day to give his DNA. Last month he donated bone marrow to a boy in Germany who is fighting leukemia. Michael is the second person from our party who has given hope to a family. Statistics show that 1/540 people will be a match in their lifetime. Our statistics seem to be more like 1/40.

Here is a note from Michael. I think you will enjoy his honestly and sense of humor.

There’s a scene in STAR WARS (1977) where Obi-Wan Kenobi gets the message from Princess Leia: “Help me Obi-Wan Kenobi, you’re my only hope.”  What a terrible movie it would have been had he said “Nope.  I’m fine here in my cave.  I got my Tusken Raider (Sand People) neighbors and those creepy, feely, midgety Jawas all over the place.  I got a good situation here, and I’m staying put.”

When the call came from Be The Match (“Leukemia … some teenager somewhere … very, very sick … you’re the best match … more testing … you might be able to help him … “)…  My immediate feeling was I had won something.  Like the numbers on my lottery ticket matched the numbers in the newspaper.  (Nice branding, “Be The Match”)  

And I couldn’t say no, no more than Obi-Wan could have said no.  Had he said no, that would have been the end of the movie, the end of the franchise.   We live for sequels.

… 

Some time mid-June I got a call and letter from Fran from Be The Match.  Fran prepped me for the following:

— Some teenage boy in Europe was sick with Leukemia, and I was found to be the best match for a marrow donation.  Turns out, the organizations don’t share more information than that.  Before Fran shared the little bit of info about the recipient, I tried to tell her I’d rather not know anything about him/her; the idea was that some people, like my wife, would never be satisfied with any level of detail.  Plus I was just happy to help someone.  Who the person was was completely irrelevant.
 
— I can’t just walk in and donate tomorrow.  I need to have a battery of tests and clearances, and I needed to donate a pint of my own blood, which I would get back after the “harvest”.  (Love the word “harvest”.)  None of the prep was very interesting, but I did get to take my shirt off a few times in front of doctors and nurses, and that was nice.

— Gunter (my name for him because I figured he was likely German) would have 10 days of aggressive chemo before my donation that would just about kill him.  This was the only frightening part of the entire process for me.  They were sharing this information with me because if I bailed at the last second, Gunter would perish shortly thereafter.

— The “harvest” would consist of general anesthesia, me on my belly, tube down throat for breathing, doc drilling above glutes into pelvis in 4 places and sucking out about a liter of marrow.  None of the details were very interesting to me.  I was just looking forward to having some scars on my ass that I could justify dropping my pants for people to see.  

When I told my friend Joe that I was going to do it, he said, “Don’t.  This is a horrible idea.”  Then I said, “Wait, you don’t understand.  I’m going to be almost completely naked, unconscious, lying face down, with people standing around me in white gowns and poking at me…  It’s going to be just like college.”  And he said, “Wow, that does sound like fun.  You should do it, and see if they can get some good pictures of you while you’re out.”  

When I told my wife, she said, “You know I don’t like driving in New Jersey, so you’re going to have to find your own ride back and forth to the hospital.”  She admitted that she would do it too, if she got the call, but she’d be very uncomfortable with the whole thing.

When I told my neighbor Ford, he said, “I’m so jealous,” and I said, “This isn’t about you, you know!”  HA!

When I told my neighbor Dina, she just said, “Sounds fun.  You need a ride?”

When I told my parents, they were very happy for Gunter, and for me.

Another time when I was sharing the Obi-wan reference with Joe, he said, “Yeah, but you know Obi-Wan dies, right?”  And I said, “Duh!  Everyone dies, stupid.”  And he said, “Good point.”

— My recovery would take from 2-10 days … but count on 7 days of ice, rest, pain medicine as necessary, taking-her-easy, no heavy lifting etc.  This is not because the bone is weakened.  It’s because of the trauma to the muscle in the harvest area, and the achy pain there could throw me off my game of whatever I was doing.  My eyes got very tired very quickly from all the rolling.  I knew an up-sell when I heard it; Fran and the doctors and nurses had to make sure I was prepared for the worst.  My recovery was easy: 3 hours of sleep immediately after getting home from the hospital, the next day I could walk albeit slowly, but by 48 hours after the procedure, I could walk up stairs two at a time.  The only things left were a sore throat and a stiff neck from the tube, and a dull ache above the buttocks. 

I cannot remember who or what brought me to the Torrey’s house 6 years ago.  Most likely it was one of their      neighbors who invited me to stop by her house party to do the swab, and I’m not one to go to a party and pass on putting something in my mouth, especially if everyone else is doing it.

And I’m glad I did.  It’s nice to think about a part of me living on and helping out a relative (we’re all related if we go back far enough).

It’s one month since the surgery.  According to Fran, different countries have different rules about what they will share about the recipient.  But every country that participates in the registry is required (at a minimum) to tell the registry if the recipient dies after receiving the donation.

So “no news is good news” as they say.

And as they say, “May the force be with you, Gunter.”

May the force be with you, Michael!!

Love, Jess

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