HaPpY 19th!

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I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)

 

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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jack knows how to party;-)

DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

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With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

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Jack’s school mom, Monica. We love her.

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Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess