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Updates on Zach from January 25, 2012 to December 27, 2012

December 27, 2012

As always, Zach's spirit is soaring. This month Lloyd and I spent a week in Florida, and while we were gone, Zach had another seizure.  The docs at Hopkins readjusted his meds and he is continuing with his physical therapy to resolve the deficit on his left side which resulted from his prior seizure.  The docs said there is no increased deficit from this most recent seizure.
Zach is interested in everything - reading and discussing a wide range of issues. He is doing his job as assistant manager of the University of Maryland's Terps basketball team and loving it, possibly almost as much as the coach and players love him.

For the past few months, Zach and I have gone out to lunch once a week.  We have beautiful lively conversations about everything from good food to poetry to inspiration to sports to world events and on and on.  I have talked with him about my upcoming travel in India and read him the following words of Gandhi because they so remind me of Zach.

“Your beliefs become your thoughts Your thoughts become your words
Your words become your actions Your actions become your habits
Your habits become your values Your values become your destiny”

At the end of our lunch this week Zach looked across the table straight into my eyes and said "Grandma, I have never been happier."  He says that often.

Tweets; Once again in reverse order from oldest to most recent

Watching National Lampoons Christmas Vacation with the family

Merry Christmas

All giddy for tomorrow morning. christmas

Well, we woke up. Means no end of the world

Great day. livingthedream

Good appointment at Hopkins

Had a seizure on Thursday. recovering

Home from the hospital grateful

Heading to an appointment with the radiologist

Good morning world #12/12/12

My therapist told me today that I can "take it easy" Nope, never. gettingbettereveryday

Picking out the Christmas tree. decisions decisions

2 doctors told me this week "that I may never run again, and if I do it'll be in at least a year"... I ran today. provingpeoplewrong

Watching the ravens game with the family

Thank you God for waking me up today. Another day to get better

At a Zaching Against Cancer event in College Park

Going into therapy already tired. notgood

Zach LedererZLeds

Letting the hair grow out. patches slowlybutsurely fuzz

Just finished the morning workout, now heading to a doctors appointment

Tough day of therapy. goodstuff

Just taught myself how to run in place and chug my feet.

 

 

 

 

 

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November 29, 2012

 Zach and I have gone out to lunch one day each week for some time now.  What a joy it is to talk with him. We talk about books we are reading. He recently finished reading “Blink.”  Zach continues to work hard at physical therapy several times a week to recover from the damage done by the seizure back in September.

Last month Zach delivered the main speech at Coaches Against Cancer luncheon, held at the Comcast Center in College Park.

He continues to receive messages from people of all ages all over the world who are praying for him as well as those he has inspired.

Attached is a letter from a recent college graduate telling of Zach's impact on his life. 

Tweets - Once again in reverse order from oldest to most recent

"Cancer cannot touch my mind, it cannot touch my heart, and it cannot touch my soul" JimmyV

Hearing Christmas music on the radio. goodstuff tistheseason

I'm thankful for sooo much. livingthedream

Already thinking/dreaming about the food tomorrow.

Going straight from physical therapy to Comcast for the game today. longday

First words of the day: "gonna get better today." truth

I always enjoy my lunches with Grandma. greatconversations

Mom gets so happy when the doctor gives us good news. It's all the same to me. evenkeel nothing's changed. I'm still me.

Just raked the leaves off of the church property with mom. therapy

Lets go Terps! comeback

They told me that I'm their only patient that can fall asleep during an MRI. I know, I'm weird

Heading for an MRI. For some reason I love these things.

If it weren't so hard, it wouldn't be worth my time. therapy gettingbettereveryday

Good appointment

Heading to Hopkins for an appointment. early

Gave it my all at therapy today. gettingbettereveryday improvements

Heading to the Comcast Center to give a Coaches vs Cancer Speech

October 23, 2012

During the past month, Zach has been working very hard at physical therapy to recover full use of his left side after the deficit caused by his massive brain seizure on Labor Day.

He has received the results of two recent MRI's of his brain - both clear and cancer free.

His appetite has fully returned and he is regaining weight and his eyebrows are beginning to grow back in.

This week the two "ports" which were used to administer his chemo treatments were removed from his chest after having been there for almost nine months.

As always, the most beautiful and amazing aspect of Zach is his unflagging spirit which continues to inspire everyone around him and far beyond.
The Huffington Post Magazine featured Zach as their Man of the Week a few weeks ago. Zach enjoyed that and took it all in stride.

"Even keeled" is Zach's current favorite word, and he certainly perfectly personifies it through thick and thin.

Here is a sample of Zach's tweets since my last message beginning with the most recent.

So much good food. Mrs. Debbie you are the best. potroast

Nike and Livestrong dropped Lance Armstrong. crazy

Bad hair day. Ugh

Happy birthday to the greatest guy I know. johndlederer

There isn't a more satisfying drive than the one home from therapy. gettingbettereveryday

Didn't deserve it. toocloseforcomfort

ravens

Always feel good after church

Good season orioles playoffs

Went so hard at therapy today. early gettingbettereveryday

Watching the O's with mom. keepdreamalive

Had a beautiful lunch with Grandma, then got to go visit Millie Bailey. goodday

Great day of therapy. gettingbettereveryday

For the first time, I'm pumped for therapy today. recovery. Getting better every day

It's getting cold out. It's gonna be a rough winter. baldboyproblems

If you ever see me around, call me out. I'm the goofy looking, bald kid

Recovery day 2's morning is complete. 30 push-ups done. On to the rest of the day. recovery

A girl is doing a presentation on "zaching" in my health class. Damn ZLeds you really are an inspiration to all."

Great report at the doctors. thankful

Was just surprised by my nurses, doctors, etc with a cake for being officially done with chemo.


I eat Ramen every morning just to feel like I'm still in college. itsthelittlethings

sleep

Early MRI

These interviews are getting easier and easier. Same questions, differentday

Went to lunch with Gramps and the "old geezers" today. I was the most bald by a longshot. winning

Homecoming. memories

Another day of therapy done. grateful

Just got the stitches removed from my head. Hopefully I'll be able to sleep now. pumped

Trying to put weight back on. noteasy

heading to church with Mom. givingthanks

Holding my line/port in hand. Surgery went very well. pumped

Last picture with the line removal pumped

Here we go! surgery pumped

September 20, 2012

Friends,

To add anything to this message from Chris below could only diminish it. We spoke with Zach from Saint Petersburg last night. He could not have sounded better.

Liz

Hello everyone. I have some very good news to report. The pathology report is complete on Zach's most recent tumor. Given that we already knew from the frozen sections during surgery that we were dealing with a cancerous tumor, the outcome could not have been better. The tumor that the surgeon removed 2 weeks ago is a grade 1 astrocytoma. The treatment for this type of tumor is surgical resection (which has already been done) and follow up MRIs. In 90% of cases of this type of tumor, the tumors do not return. If they do return they are very treatable with very low dose oral chemotherapy.

We, including the doctors, were all very surprised by this diagnosis. There will be no additional treatments necessary at this time. A follow up MRI will be done in 2 weeks to assess the remaining surrounding brain swelling which they are continuing to treat with steroids. Zach still has a deficit on his left side due to the seizure, but the doctors feel sure that he will regain all strength and abilities that he has lost. Zach is going to physical therapy 3 days a week and continues to get stronger every day. A surgery is still planned in about 3 weeks to remove the hickman catheter in Zach's chest which they used to administer his chemo treatments for his January tumor.

Zach's spirits remain as high as ever. The doctors have assured us that a complete cure is still a real possibility. Thank you all so much for your continued prayers. Having wonderful friends and family has made this ever changing situation so much easier on Zach, John, Julia, and me. I will continue to update on Zach's progress.

Thank you again,
Chris

August 30, 2012

After Zach's surgery to remove a malignant brain tumor last January, his medical team at Johns Hopkins Hospital developed a six-month treatment plan for the parts of the tumor they had been unable to remove. Two weeks ago, that six-month treatment plan was completed.

Zach tells us that the first four months of alternating chemo and radiation treatments was not that hard on him. He worked out every day and kept in touch with countless friends and family members. The last two months of very strong chemo treatments were more difficult, and yet, Zach held up remarkably well physically to the puzzlement of the docs. His spirit has remained indomitable throughout.

Zach's mom Chris, dad John, and sister Julia have been true pillars of strength and love.

Zach has clearly been a young man on a mission through these months. He is in touch with many kids around the country who are also living with brain cancer. These kids often tell him that they were close to giving up before they were in contact with Zach. He continued to walk the halls of Hopkins wearing his Superman cape. In a recent interview on NPR, in response to a question about this cape, Zach replied, "when I am wearing my Superman cape and talking with one of these kids, for that moment he is happy." Such wisdom and compassion.

Zach has also become quite comfortable before TV and video cameras, as well as radio mikes, during these months. He has done interviews about his experience with brain cancer on both ESPN and NPR. For the week of September 10, he will be man of the week for Huffington Post. Fits right in with his being a journalism major. 

Very soon, Zach will return to the University of Maryland for the second semester of his freshman year. He will be sharing a dorm room with a friend from Centennial High. Lloyd and I have met and talked with some of Zach's friends during the past months. What hopeful prospects these young men and women are for the future of our planet!

Following is the standard listing of some of Zach's tweets since my last newsletter, some from his rougher days. As always they are in chronological order from the present to the past. I realize that I have included many of them. I chose to do this because they provide a continuous thread of what has passed through Zach's mind during the past several weeks of what easily could have been debilitating treatments.

I decided and had to convince my mom of hanging my cape on a wall in my dorm room. #itscool

Heading home! So #grateful

I started telling the doctor how dry my mouth is. She then informed me about artificial saliva. No Thank You! #gross

Can't sleep and my mind is running wild. #goodstuff

You have cancer?" Yea. I Have cancer in a chokehold and I'm waiting for him to tap out

Can't fall asleep because my nurse has to check my vitals so often. Don't need sleep. Too busy #livingthedream

Doing interviews from my hospital bed. #nodaysoff

Nurse kept me up all night. She was doing tests to see if I'm crazy. Somehow I passed

Had an incredible conversation with Grandma today. #emotions

#winning the fight. 50mg of IV #Benadryl.#superman

I'm fighting the Benadryl. Nurses can't Believe I'm still up. #superman

Finished the fifth and final round of chemo #itsover #grateful #emotions #blessed

In the hospital, watching "Winning Time: Reggie Miller" with mom. #goodstuff

Chemo: round five, I'm still alive

Heading to National Children's Hospital to meet a young man with cancer

Never mistake activity for achievement.

Tune in to @WYPR881FM today at 12pm when @brockyetso, @bfurmz, Dr. Patrick Brown, and will be chatting about young adult cancer!"

Hanging out with some crazy little kids. #cousins #vacation

Heading to the Outerbanks for a few days of vacation before more chemo. #needed

Had an incredible lunch with @KingHugel and my grandma today. #memories

Go to sleep at 1, wake up at 6. #nosleep #livingthedream

Got out of Hopkins early. No transfusions needed. #grateful

Just got a call from the Huffington Post. They want to feature me in "the greatest person of the week". #again #crazy

Waking up at home. #itsthelittlethings

Heading home. I always make it a point to get out of the hospital a day early. #success

Watching Shawshank Redemption in the hospital with mom. #classic

The new meds have me hallucinating. #scary

Had a rough week of chemo, but I know this nothing compared to what a bunch of these kids on the floor are going through.

They make me take a shower every 6 hours. #chemo #nosleep

Hung out with some #trueheroes tonight at Hopkins. I've got it so easy. #blessed

Cancer cannot touch my heart, it cannot touch my mind, and it cannot touch my soul. Those three things will live forever. #JimmyV #truehero

Heading to breakfast with grandma. #goodstart

Terry Fox. My first hero. My entire mentality about cancer has been formed by him. Research him #truehero

Fighting two wars. And both of them are in my head.

July 6, 2012

In the past month since my last update, it seems I have heard from countless ones of you telling me you keep looking for this e-newsletter so you can read about Zach. Those words are almost always followed by an assurance that you also read the public policy part of my correspondence, though admittedly only after scrolling down to read about Zach.

When Zach completed his 30 day schedule of radiation, doctors, nurses, and patients all came pouring out into the hallway to cheer for the 19 year old guy in the Superman cape who has so inspired all of them. Chris said that there was a ceremonial ringing of a gong and that Zach told her it was very emotional. 

Zach is in the midst of a several week break from treatments and is enjoying having more time for friends. During this break he is continuing his mission of doing whatever he can to help kids who are also dealing with brain cancer (see his tweets below). Zach continues to work out strongly and regularly. His appetite is very good. He resumes another round of chemo treatments on July 15. This is part of his original treatment plan.

The University of Maryland basketball team has been initiating its new members and practicing. Zach is frequently with them in his role as assistant manager. He truly loves this. Then again Zach loves just about everything about life. He has completed his schedule for classes in the fall semester and received his dorm room assignment. He will be rooming with a good friend from his class at Centennial High School.

It has now been more than half a year since we learned of Zach's return of brain cancer. As often happens in life, it sometimes seems like just a few weeks ago and sometimes like years. Lloyd and I speak of him so often and acknowledge that Zach has increased our joy of life, which was very strong already. I realize more clearly and more deeply that Zach has had a profound influence on how I want to live my life.

The operative work for me is "gratitude" - that Zach is alive on this planet and that he is my grandson.

Please continue your prayers - in whatever way you pray. Zach and we are certain that they are having a big impact.

Terps Magazine (the Spring issue of this University of Maryland publication)http://issuu.com/umaryland/docs/terp_spr2012_final?
mode=window&pageNumber=8

 Once again, a select number of Zach's tweets during the past month, starting with the most recent:

Just visited Joshua DuPuis (a 10 year old boy who also has brain cancer and with whom Zach has been in close contact) at the hospital. He's doing real well.truehero

My lack of sleep is beginning to catch up with me. sotired

 The other day I was introduced as a "cancer victim". I corrected him and said that I consider the cancer itself to be the victim.

 Joshua DuPuis' surgery this morning was a complete success. His first words were "tell the people who supported me, thanks."truehero

Heading to Congressional Country Club to be an honorary guest at Tiger Woods' AT&T National Tournament.

I'm so happy. I feel like I just had dinner with myself at the age of 10. Joshua Dupuis.incredible inspiration emotional

Please keep Joshua DuPuis in your prayers, he's getting surgery in the morning. He's an incredible inspiration to me.

Heading to DC to surprise a young man (Joshua Dupuis) at his pizza party. He's getting brain surgery tomorrow and considers me a hero.humbled

Among the greatest feelings in the world. Waking up in your own bed for the first time in a while.

On a scale of 1 to 10, that nap was incredible.

So happy to be home. needsleep

In a lobby, staring at a small fish tank. I'm wondering a lot of things. Do fish ever get bored?

Good morning world!

CP (College Park) chilling with the basketball managers. Working camp.

Peaceful Sunday mornings

On a walk with dad. It's so beautiful out.beauty

Gonna be a good day. Already pounded out 112 pushups. getstartedearly

My first day off from radiation, and I still have to go to Hopkins for an appointment with the doctor.lovely

Just finished my 30 days of radiation treatment. emotional

Slept through the night for the first time in a month. grateful radiationproblems

I always have a tough time waiting for brunches. To eat or not to eat. hungryHappy

Fathers Day to my best friend johndlederer. You do so much for me, and have made me who I am.grateful

Going to bed at 5 PM was a bad choice. cantfallbackasleep

Go to bed late, wake up early. nosleep livingthedream

It's like Christmas when mom goes to the grocery store. somuchfood

Conversations in the oncology waiting room never seem to vary too much

Early mornings by my own choice

Woman at radiation saw the scars on my head, then proceded to inform me about "Zaching". I just went along with it.toofunny

People are saying that 9 Am is early. what I'm well into my day. 4hours

Beautiful day, but I had to stay out of the sun. radiationproblems All good though, still a great day.

Late night and early morning. nosleep Too busy livingthedream

When I was half awake I said I was going to leave for UMD at 1:30. No recollection. But I always trust asleep Zach more than awake Zach

Waiting for radiation and everyone in the waiting room has Rita's italian ice. Except me.whatsgoingon notcool wheresmine

I just want to inspire one person as much as the kids fighting cancer at Hopkins have inspired me.cantbedone

The first thing my social worker said to me was "I'm so sorry that you have to go through this." Don't be sorry for me. I'm livingthedream

May 31, 2012

Zach is nearing the end of his fourth week of radiation treatments.  Two more weeks of radiation and then two more weeks of chemo.  Spoke with Chris today and she said the docs at Hopkins remain very pleased with Zach's condition.  There has been clear evidence of his remarkable spirit from the beginning when he learned of his second tumor last January.  Now, almost five months later, that spirit remains indomitable and messages continue to pour in evidencing Zach as inspiration.  It was almost five months ago that Zach told me "Grandma, I realize that I'm in a position to inspire people, and I'm going to use it."  Use it he has.

In addition to that glorious spirit, Zach continues to exhibit incredible physical stamina:  good appetite, daily physical workouts, working with the incoming new basketball players at the University of Maryland, socializing and partying with his friends and family

And now for some of Zach's recent tweets, again with the most recent first:

"Earth. You don't have to be crazy to live here. But it helps" That's my reason for it. #truth"

"The technicians had me listen to the Forrest Gump soundtrack during radiation today. #classic"

"In the middle of an incredible conversation with @KingHugel about heaven. #deep #beautiful"

"Mom wants me to shave the stubble on my chin. But, other than my smile, it's the only sign of hope on my face. #wontdoit"

"Helping the new guys move in. #terpsbasketball"

"Great day, so pumped that everyone's coming back from school"

"Just did a hundred slow "Perfect Pushups" in 20 minutes. And I just had radiation this morning. I must be the greatest! #arrogance"

"Rita's... decisions decisions. #choices"

"Zaching with American Idol winner David Cook at The Race for Hope in DC http://pic.twitter.com/I5akThM1"

"About to pass out. Never got to take my post-radiation nap today. #toobusy"

"Good interview"

"The Columbia Patch is coming to my house tomorrow morning to film one of my workouts and do a follow up on me Haha #legendary #mylifeiscrazy"

" 'I am not what I want to be, not what I ought to be, not what I am going to be, but I'm better than I use to be, and for that I'm grateful.' "

"Taking that daily post-radiation nap right about now. #retired"

"The menu said "best crab cake you'll ever have". #nottrue #stomachache"

"So much eating today all for #mothersday. Gonna be a good night of sleep."

"Happy mother's day Mom. You're the greatest, even if I claim to be"

"Be who you were born to be. #legendary"

"No radiation today #grateful"

"O's game with some friends. #alwaysagoodtime"

"My stomach looks like a third grader went to town with markers and a stencil. #toomanylines #toomanycolors"

"Radiation hits hard #sotired"

May 10, 2012

On May 1 we celebrated Zach's 19th birthday.  He received congratulatory messages from all over the world.  He has a very dedicated group of followers of his inspirational approach to living with a cancerous brain tumor.  On Chris' birthday, May 4, Zach posted on Facebook "Happy Birthday, Mom.  You have taught me how to truly love." 

On May 6, Zach and about 75 of us wearing Zaching tee-shirts ran or walked in the Annual National Race for Hope around the U.S. Capitol Building.  About twelve thousand people of all ages participated, three hundred or so being survivors of brain cancer.  During the ceremony after the race, Zach was honored as the model of courage among the group, using his time to help others with brain cancer, particularly those younger than he.

It was a beautiful, inspiring day with almost all of our grandkids participating.

Zach continues to be called upon for interviews and speeches.  He continues to agree and speak directly from his heart and soul peacefully with love and passion.

For next fall's semester at the University of Maryland, Zach has all of his classes scheduled.

His roommate from last fall will be commuting next year, and Zach will have a new roommate, Andy, with whom he was a friend and classmate in Howard County.

On May 8, Zach received his first radiation treatment.  He will receive treatments five days a week for six weeks.  The docs then plan to do two more rounds of chemotherapy.  They are very pleased with how Zach responded to his first three rounds of chemo.  We ourselves are amazed.  At the post-walk ceremony in D.C. on Sunday, Zach was summoned back up on to the stage after he had stepped down from receiving his award.  He jumped down from some steps, hurtled over a stone wall, and leapt back onto the stage - effortlessly.

I know that having Zach with me in spirit will hold me in good stead during the upcoming special legislative session.

Following is a sampling of Zach's many tweets since my last e-newsletter from the most recent to the earliest:

"Dressed up for the basketball managers dinner tonight. I was walking on campus in a shirt and tie, and 3 people called me Professor X #fresh"

"Pain is temporary #truth"

"Not sure how I feel about being 19. #Idontlikechange"


The first 10 Birthday wishes I got on FB were from people in Greece. It was May 1st in Greece before it was May 1st here. #crazy #cheating"

"19 incredible years of #livingthedream #blessed"

"I have a bad case of senioritis for the second time. #notagain"

"Left over shrimp scampi for breakfast. #yum"

"Saw a streaker and a fight tonight, what more can you ask for out of an Orioles' game"

"Stand by me"

"When I get angry, my nurses always say "stop and smell the flowers". I'm out smelling them... my nurses have it out for me #allergies"

"Was great to be at practice again today hanging with the guys"

"You could put an angry tiger inside me right now... and my immune system would kill it. #whitebloodcells"

"They're giving me more Benadryl to knock me out. Fight me like a man! #chillwiththebenadryl"

"The nurses take so much blood from me everyday, I don't know how I haven't deflated yet. #impressive"

"It took them a while, but the nurses finally knocked me out with the Benadryl. #welldone"

"The nurses are giving me a ton of Benadryl to knock me out before the transfusion. They're in awe that I'm not passing out. #superman"

"More blood transfusion = more waiting #getmeouttahere"

"Good morning everyone. It's going to be another good one."

"Preparing all sorts of speeches"

"Finally got that base tan on my bald head yesterday. #crucial"

"I get all sorts of messages from strangers telling me that they're proud of me and what I'm doing. I can't help but smile. #emotions"

"Or at least the doctors are turning me into superman. #onestepatatime"

"I'm going to be honest... I think I'm superman #FACT"

"Blood transfusions aren't as fun as they sound. And they don't sound good to begin with. #gettingbettereveryday"

"Going to Hopkins to make moldings of me for my upcoming radiation treatment. #preparationforsuperpowers"

"Time is so precious. #takenothingforgranted"

"I know what is within me, even if you can't see it yet."

"I was chosen as the test dummy for my dog's shock collar... It works #zap #painful"

"Writing a speech as I sit outside in the sun. #beautiful"

"Another day to get better. #recovery"

"Look me in the eyes. It's okay if you're scared. So am I. #classic"

"Jackie Robinson. A true American hero #muchrespect"

"Sore from a morning workout"

"My hair's departing words to me: "distance can only strengthen our relationship". I'm missing you bud. #bald"

"Finished round 3 of chemo last night... Round 3, I know you were scared of me"

April 13, 2012

Sad as I am about the legislature's performance, it doesn't even begin to dampen the following good news about Zach.

This week prior to the commencement of his third round of chemo therapy, Zach had a MRI - the first since chemotherapy began.  On Tuesday, my daughter, Chris, wrote that "the tumor size has noticeably decreased and the post surgery effects on Zach's brain are almost completely resolved.  The doctors are very happy with where we are in the treatment plan right now." This is great news, though Zach’s fight with cancer is not over.  Clearly his spirit and the many, many prayers coming his way had a big part in it.

I wrote in a prior update that  "Team Zaching" has formed to participate in the Race for Hope in D.C. on May 6.  This is the annual race Zach led on his 18th birthday last year.  This year Zach will receive the "Spirit of Triumph" award after the race.  As with all of the other attention being paid Zach, he shows great joy in this and yet very steadily takes it in stride.

Here are some of Zach's tweets from this week starting with yesterday, Thursday morning, and going backward to Monday prior to chemo:

 “Incredible morning so far #livingthedream

“It's always a good time when I wake up to seeing my nurse drawing blood from me. #nightmares

“I think my chemo's scared of me #justsaying

A response from a friend “if it even dreams of beating you, it better wake up and apologize #aliquotes #thechamp

“I can see Camden Yards outside my room's window in Hopkins, but I can't get the game on tv. #devastating

“Just got to Hopkins and they randomly put me in the quarantine room. It's vacuum sealed. #weird

“About to get this workout in”

“Calling it a night. Back to the grind tomorrow, starting round 3 of chemo. #bringit

“Going to return some shoes... I make quick, irrational decisions when I'm looking at new Nikes #rookiemistake

April 6, 2012

Zach’s spirit remains indomitable. After his last round of chemo when his white blood count was low, he ran a fever sufficiently high that the docs wanted him admitted to Hopkins. Zach found this frustrating since he said he didn’t feel that bad.

Increasingly I find that the clearest way I can report on Zach is to quote some of his tweets. Here are a few from this week, most tweeted from the hospital:

“Just had an allergic reaction to a blood platelet transfusion. Too serious #hives #swelling #oxygen mask”

“Just heard that the word Zaching is now on Urban Dictionary”

“Waiting for my procedure to have a catheter placed in my neck without anesthesia.”

“Just had an operation and I never took off my Nikes.”

“Had a good time at the UMD Men’s basketball banquet tonight. It was great to see all the guys one last time. #blessed”

“Eighteen and living the dream.”

"No voice today, karaoke with the boys got too serious last night"

"Things turn out best for the people who make the best of the way things turn out"  (John Wooden - one of Zach's favorite coaches and authors)

Zach will likely start his third round of chemo soon.

On May 1 he will be 19 years old. Last year on his 18th birthday Zach led thousands of people through the streets of D.C in the Race for the Cure, an annual fundraiser for brain cancer research. At that time he was not aware of another tumor. This year the race is on May 6. Zach has registered a team and is planning to participate. Many people, some of whom Zach has never heard of, are signing up to race with him. Lloyd and I and our kids and grandkids will be with him as well.

Zach continues to teach us all.

March 30, 2012

Two of Zach’s tweets from yesterday:

"Sunshine blue skies"

"Blood counts were rock bottom today and the doctors didn’t expect me to get out of bed.  I worked out and went to a friend’s"

And this morning’s tweet:

"I had a slight fever this morning.  Maybe I am mortal."

Zach went to Hopkins twice this week for scheduled checkups.  The docs remain very pleased with how he is doing physically, and they appear to be amazed by his spirit, as we all are.

He continues to be inundated with requests for interviews and does his best to accommodate all of them.  I believe he is clearly aware of the positive impact he is having on so many lives.

I am mindful of how blessed I am to be his Grandma.


March 23, 2012

Zach was admitted to Hopkins again on Tuesday for four days for his second round of chemotherapy. At 1:37 this afternoon, while sitting on the floor of the House during a long debate on the budget, I received the following text message from Chris: “Heading home from the hospital.  Zach did great!”

Zach has received expressions of deep appreciation from those caring for pediatric cancer patients. They told him that he has no idea what a great positive impact he is having on these kids. I believe that Zach knows full well what he is doing. He is very intentional in his words and actions. I recall his telling me shortly after learning of his tumor that he realizes he is in a position to inspire and he intends to use it. He certainly is.

Zach and I have been texting this week about a poem he recited for me when the two of us were on our daily 6 am walk along the beach during our extended family annual week in the Outer Banks last summer. I read some of Zach’s tweets yesterday and recognized them as part of this poem. I texted Zach telling him that I loved his tweets and asking him to send me the poem’s title and author. He responded, “The Little Chap Who Follows Me” by Sven Nader.  He added that this poem is one of his favorites and is “becoming more and more relevant” in his life. Here are two of his tweets from yesterday:

 “I must be careful as I go, Through summer sun and winter snow, Because I am building for the years to be, That little chap who follows me”

 “A careful man I must always be, A little fellow follows me, I know I dare not go astray, For fear he'll go the self-same way,” 

And here is one more of Zach’s tweets from yesterday in his own words: “If you think you can't, you won't. Not because you actually 'can't' but because you've already convinced yourself you can't.”

For those of you who may not be familiar with Twitter, (I swore that I would never use it until John, Zach’s dad, told me that Zach tweeted regularly) I would describe this communication mode as a series of mostly cryptic stand-alone statements.

To me, Zach’s choice of words while he is in the hospital receiving a chemo treatment, gives me a deeper insight into his amazing, beautiful loving mind. I am reminded of one of my favorite quotes by the Dali Lama – “The mind contains all possibilities.” I want to become more practiced at using my mind the way Zach uses his. Imagine the world if we all did.

Channel 4 WRC news did an update about Zach on Tuesday Night.
http://www.youtube.com/watch?v=rcJ1Vf4kOR4&feature=player_embedded

March 16, 2012

On Wednesday, Zach went to Hopkins for a check-up.  The docs particularly wanted to see if his white blood count had recovered since the chemo treatment. Chris told me that the appointment could not have gone better.  Zach has regained full energy and says he feels great. His next chemo treatment begins on Tuesday.

If anyone had told me that I would be using Twitter I would have told them that they were way off.  I had not counted on the influence of Zach and his sister, Julia.  I have come to love “following” them on twitter.  Here are three of Zach's tweets from yesterday, one about beginning to lose his hair, another about Hopkins filming his appointment for one of their PR spots, and a retweet of a response he received.   “Bits of hair were coming out in the shower. Maybe today's the day. Going bald. Crushed.” “About to go in for an appt at Hopkins and they just told me they want to film the appt and interview me for a PR.”   “Appointment at Hopkins went well.” Responses: “Keep on trucking man.” “Stay strong bro you have a whole community praying for you.” “Don’t worry.  Chicks dig bald guys.” As you can see, Zach's amazing spirit goes hand in hand with a great sense of humor even now.

Zach continues to receive many requests for interviews and talks.  This week he went to his high school alma mater, Centennial High, to speak to an assembly.  I wrote several weeks ago that Lloyd and I have called Zach our teacher since the occurrence of his first brain tumor seven years ago.  I now tell him that the whole world is his classroom.

Below is an interview that was aired nationally on ESPN last Saturday.  Lloyd and I had not known of the long term goal Zach had when he was at Johns Hopkins for several months at the age of eleven.  We must confess that, although we are heeding Zach’s request that we be happy, tears welled up in our eyes when we heard it.  We were both also deeply moved by the beautiful way in which Chris and John spoke directly from the soul. 

Link to Zach’s ESPN interview: http://espn.go.com/espn/page2/index?id=7669626

We are mindful of how sacred life truly is.

March 9, 2012

Last Sunday, in the Comcast Center on the College Park campus of the University of Maryland, there was a red sea of “Zaching” shirts in the stands.   Thousands of UM students were wearing them.  On the court during breaks in the Terps’ final home game of the season, Zach mopped the floor of sweat with a big mop – one of the many responsibilities of an assistant manager.  He could not have looked happier. 

The side effects of his first chemo treatment were minimal. His parents and sister, Julia, are always there for him.

When I spoke with Zach yesterday he sounded simply magnificent.  He said, “I feel great, Grandma”.   His spirit is as inspirational and indomitable as ever.  In a humble way, he is aware of the number of people he is inspiring.  It is his conscious intent to do so.

As I move about the halls and streets of Annapolis, I frequently find myself face to face with someone striking a “Zaching pose”.   I often do not know these individuals.

I am mindful of Zach and his family all through the day.  This brings such a sense of peace to me.

Thank you for your continuing expressions of love and support.  Zach thanks you as well.

March 2, 2012

On Tuesday, Zach was admitted to Hopkins for the commencement of his chemo treatments.  After surgery to install his ports, the first treatment was administered that night .We are happy that Zach felt very well all week---sleeping well, eating well, and venturing to the cafeteria for pizza with his mom, Chris.

Radio, TV, and press reporters continue to contact Zach for interviews.  He has refined his message somewhat to say “If you want to know what you can do for me, the answer is pray for me, be happy, and don’t worry.”  He adds that this is literally what he wants from us. He continues that although it may sound crazy to say “be happy for me” under the circumstances, it is truly not.

Zach refers more and more frequently to the young kids living with cancer across our nation who are sending him photos of themselves in their hospital beds “Zaching”. Some have told Zach that they had given up hope until they learned about him. It is clear that these kids are a motivation for Zach. They have become his mission.

Chris told me that Ben Carson came to visit Zach on Tuesday. Our observation has been that Dr. Carson is much more than a gifted surgeon. He is also gifted at using healing words, and Zach loves to hear them.

Chris told me that Zach will be discharged from the hospital this evening. Sunday he goes to the University of Maryland to be with his beloved Terps for their final game of the season. Zach has deeply touched the lives of these young men. Word has it that there will be a big “Zach” celebration. Lloyd and I are very much looking forward to being there.
Zach knows that he still has a long road in front of him. Then again, we all do, not knowing what is around the next bend.

Once again, Rumi’s words “Let the beauty we love, be what we do.”

February 24, 2012

When I spoke with Zach recently and asked how he was doing, his response was “Grandma, I’ve never been happier, and I’ve never felt stronger – physically, mentally, and emotionally.”  I, Grandma, would add “spiritually” as well.

There is a long standing custom in the House of Delegates of opening each floor session with the Pledge of Allegiance and a prayer.  There has been some friction in years past regarding how the prayers were used to invoke controversial current issues, sometimes in a hostile manner.  For the past several years, it has gone quite smoothly.  One day last week, a new young woman delegate from Montgomery County spoke some words that she finds inspirational in her life. They brought Zach to mind.  “We are spiritual beings having a human experience.”

The doc’s plan is to begin chemo treatments next Tuesday. This week Zach’s parents received the good news that his spinal fluid tap and spinal MRI came back clear.

I have been asking all of you to hold an image of Zach as whole and healed. Now I am modifying that request a bit.  Please hold an image of Zach with a healing substance flowing through his body, not a ravaging substance.  I know that all of your positive loving thoughts and prayers are having a big impact on Zach as he is living this “human experience”.  I feel deep gratitude toward each and every one of you.

February 16, 2012

Zach continues to inspire and teach.  The world is now his classroom with messages coming in from all over the globe.

February 16, 2012: Ellicott City teen’s fight with cancer inspires “Zaching”;
http://www.baltimoresun.com/explore/howard/opinion-talk/ph-ho-cf-editorial-0216-20120214,0,3685886.story

February 15: Many drawing strength, inspiration from 'Zaching'
www.baltimoresun.com/sports/terps/bs-sp-cowherd-column-0216-20120215,0,4982950.column

February 10, 2012

Since they are still not certain of the substance of his tumor, Zach’s docs at Hopkins are still working on a treatment plan. 

In an ever-expanding circle, Zach continues to inspire.  Columbia PATCH picked up on his story and from there it went to the Huffington Post.  Then TV and radio followed.  The many, many responses Zach is getting to his “Zaching” pose with arms raised in muscle formation in his hospital bed demonstrating a determination to be whole and healed are pouring in.  From college students across the nation (individually and in groups), to fans in the bleachers at a Centennial High (Zach’s alma mater) basketball game, to the coach of the University of Maryland Terps, to family and friends, to his past teachers, to committees in the Maryland legislature, and on and on, people are posting photos of themselves “Zaching” on his facebook page.  Zach is getting joy and strength from them and sending it right back out into the universe. 

We expect radiation and chemotherapy to begin shortly.  Zach fully understands the seriousness of this, and he is ready.

I have come to understand that Zach’s beautiful soul is not only a gift to us in his family.  He is a blessing to all of us.

February 3, 2012

On January 26, the day after his surgery and the date of my last message, physical therapists at Hopkins took Zach out in the halls for some post-op exercise.  After some time walking vigorously up and down the halls AND stairs, the therapists said he could return to his room and that he needed no further therapy.  In that January 26 message, I wrote that Zach “may go home tomorrow.”  In fact he did, and on Saturday, with the approval of his docs, he performed his job as assistant manager to the University of Maryland’s Terps basketball team on the court in the Comcast Center at College Park.  Lloyd and I went to the game to see him, as did Zach’s parents, Chris and John.  Zach walked around the court tending to his assistant manager’s duties with ease and grace.  He clearly has abundant energy. We saw some people at the game who asked us how Zach was doing.  We replied, “Look out on the court at the guy wearing a white baseball cap and see for yourself.” Zach truly loves basketball.  This past Wednesday, when the Terps played in Miami, all of the Maryland coaches wore white sneakers in his honor.

Zach "zaching"

On the day after surgery, Zach had a photo taken of himself in his bed wearing his hospital gown, holding his arms folded in a strong armed position, and gazing calmly, intently, and very directly into the lens.  He then placed this photo on facebook. Since then, Zach has received hundreds and hundreds of comments from individuals and groups of people “Zaching” with their arms in the same position.  Two of my favorites – scores of kids in the bleachers at Centennial High School (where Zach attended and his sister, Julia, currently attends) and the chefs at one of my very favorite restaurants, Sushi Sono, all “Zaching”.

When people in Annapolis ask me how Zach is doing, I reply that he is doing just great physically, mentally, and emotionally.  I told Zach the other day that many people tell me what an inspiration he is.  He responded that his intention is to reach out to others and thereby help himself and them.  Once again, Rumi’s quote “May the beauty we love be what we do” comes to mind.

I have heard from so many of you that you are praying for Zach and getting others, including your families, friends, colleagues, and congregations, to do the same.  We have received word from dozens of religious groups of many varying faiths in Howard County alone that are invoking his name at their services.  Thank you from deep in my heart and the hearts of Zach and all of our family members.  Please keep those prayers coming.

In addition to Zach, Lloyd and I have seven other beautiful grandchildren ranging in age from 10 to 16. We gathered over the weekend to celebrate Lloyd’s 78th birthday and his son, Ray’s, 44th. Our hearts are warmed beyond description to see and hear these kids who look up to Zach as the oldest and wisest.  They seem to understand in a simple and clear way that Zach is in a very serious condition, and to a one, they say that they are following their oldest and revered cousin’s example in “knowing” that he will be fully healed and back on the beach in North Carolina with them come August.

How can Lloyd and I do otherwise?

January 26, 2012

Dear Friends,

Yesterday afternoon, Zach’s surgery was delayed three hours until 4pm.  He passed the time by singing and telling stories to whomever was around.  When the docs came to ask if he was ready to go to the OR, he replied "I'm more than ready".

Surgery lasted for four hours and went well.  The docs removed a cancerous tumor and  were unable to get some "tentacles" radiating from it.  So Zach will have radiation and chemo treatments which will commence in a couple of weeks after he has healed.

Lloyd and I saw Zach about two hours after surgery.  He looked great and was totally clearheaded and talking a bit. Some hospital staff who helped care for him seven years ago stopped in to see him, and he called them by name. When Lloyd and I headed home, he was preparing to watch the Maryland Terps play Duke with his Mom.  Were it not for his surgery, Zach would have worked as an  assistant manager to the Terps at the game.

Zach has remained very calm and peaceful throughout. My daughter, Chris, who spent the night outside Zach’s hospital room, said he slept all night very peacefully.  This morning, when the docs told him that the tumor was cancerous and they had not been able to remove all of it and that he would be undergoing chemo and radiation therapy, Zach accepted the news calmly. He is very upbeat and ready to get started.  He believes that he will recover fully.  It is becoming increasingly clear to me that Zach is deeply connected to our Source.

His sister, Julia, and some of Zach’s friends are coming to visit today.  Believe it or not, he may go home tomorrow.

Please keep him in your prayers and continue to spread the word.  Love and support is pouring into Zach, and he openly cherishes every bit of it.  I know that he draws on it for his amazing strength and courage.

In my Annapolis office we have received hundreds of responses to the message I sent yesterday.  Thank you with all my heart.  They mean more to Lloyd and me that we can say.  We told Zach about them today, and he literally beamed.

January 25, 2012

Dear Friends,

I am missing the legislative session this morning because Lloyd and I are about to drive to Johns Hopkins Hospital where Zach will undergo brain surgery at 1:30 this afternoon.  Ben Carson and another very gifted surgeon from Hopkins will be performing the surgery.  About two weeks ago, when Zach underwent his regular six month check up, an MRI revealed another lesion on his brain.  The surgeons decided yesterday that surgery would be today.

It has been seven years since Zach had his first brain surgery for a tumor on his brain stem.  After months of inspirational  determination and hard work, Zach had a full recovery.  Now at the age of 18, he is a freshman at the University of Maryland in College Park.  He is an assistant manager of the university’s men’s basketball team.

Many of you know that I value my personal relationships deeply and particularly love communicating with other human beings at the level of the soul.  I am blessed with many dear close family members and friends.  I have learned so much about life from them.  Zach is the greatest teacher of the value and beauty of life whom I have ever known.

He was performing his manager’s job at College Park yesterday when he got the news that surgery would be this afternoon.  He drove himself home to Ellicott City and posted the following messages on facebook:

“Found out that I’m getting surgery tomorrow.  Don’t want anybody to be worried, I’ll be fine.”;

“Another opportunity for me to prove myself worthy of this  life.  Blessed.”;

 Zach and his devoted family – my daughter Chris and her husband John Lederer and their daughter Julia  and a large extended family – believe deeply that it was prayer that got Zach through seven years ago.  We are asking all of you now to please pray in whatever way you choose for Zach to be whole and healed.  Please ask everyone you know to do the same.

Many quotes come to mind about Zach, and none more than Rumi’s – “May the beauty we love be what we do.”  That is how Zach lives his life.

I am blessed to be his Grandma.

Love and Peace.

Liz

 

 

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