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Family Friday - Ryan McGarry

Remarks on Cancer

Penn State Dance Marathon, “THON” Kick-Off Dinner

January 26, 2005: from the Presidents Hall, Penn Stater Conference Hotel

Ryan McGarry

Transcript of the original speech

 

This story begins in a CAT scan waiting room, at Scripps Hospital, 25 miles north of San Diego. I remember with absolute accuracy the hum of harsh fluorescent lights, and a wall clock’s clicking—that echoed and think about that—how hard it is for a clock to echo in a room; but it did. I’m watching the second hand, watching it start-stop-start-stop…

 

The pen I’m holding—it’s for the consent form—I start to tap it on the clipboard in synch with the clock.

 

Tap

Tap

Tap       and I’m watching, with great intent, every tick of that clock

Tap

Tap

Tap       The old man in the stretcher next to me lifts his head: “do you

Tap       know kid,” he says, “what the origin of the word ‘patient’ means?”

 

TAP. 

 

I say – “huh, wha…no”

“There’s a latin root to it—pati…”

“uh what does it mean?”

“Patient, pati – it means…to suffer.”


A horrifying chill… 

It had taken me a few days from diagnosis to fully realize…and now it came. I was a cancer patient.

“And since that’s what we are,” said the old man, “let’s not make things worse with the pen.” 

Just what does it mean to be a cancer patient?

In the coming weeks, you will be the privileged audience of many stories about cancer and hope. And it’s true: survivors and those who knew the brave fights of angels taken too soon—a hope surrounds them, as it did some 4.1 million ways to many of you one year ago. But even as a survivor…some days I wake up very unhopeful—worried about a med school exam, angry about a cell phone bill, crabby for no good reason. In fact I’d argue that the only way to go through life completely hopeful one-hundred percent of the time is to have to two ear phones: you’ve got Larry and his music in one ear, and nonstop Mike Cocco in the other. And it’s all hope. 

That joke was brought to you by MikeCocco.com  — slash I heart you … Say we won’t 

So if not hope…maybe being a cancer patient is best represented by chemotherapy; because, of course, chemo is unique to cancer patients. And yet, I’d caution you: while a bald little boy is an instant grab for compassion, a little girl in an oncology clinic with a full head of hair and not a moment of chemo deserves just as much of your affection—it may be that you just can’t see the resection scars from her brain surgery. In 2006, with fantastic advances in anti-nausea meds and precise dosing, chemo isn’t always the hardest part of being a cancer patient.

But maybe chemo has never been the hardest part of being a cancer patient.

Maybe the hardest part about being a cancer patient—indeed, what defines a cancer patient—is that clock on the wall…just like in the CAT scanner waiting room. 

Tonight, for most of you hopefully, minutes and seconds have been racing, ripping, rocketing by. For a cancer patient, and parents of cancer patients, those seconds drip—even slower than the drip of an IV bag.

How slow can a minute be? I have a watch right here; I thought we’d give it a try

(click) 

And that was only thirty seconds. Lagging seconds stretch nights into eternities; thoughts race in such empty time:

Is the chemo working?

Are there still cancer cells?
That pain in my arm—is that the cancer coming back?

Is it winning?

Will I make it past the seventh cycle?

Did I pick the right treatment?

Was the doctor right?

What does this headache mean?

What does this pain mean?

What does this swelling mean?

Is it cancer? Is it going away? Is it still in me? Is it still in my child?

  

Ladies and Gentlemen: you must always remember that no matter how many millions of dollars THON raises, it is your very presence and the wondrous distraction you create for those kids and their families—it is your ability to interrupt those awful, slow barges of time that carry torturous thoughts…this is the true power of THON.

My slow clock—those hesitating seconds; well, they’ve never sped up. I’m a few months from officially being cured and cancer is well into my past, yet there are nights still where a normal pinched nerve in my arm stirs an army of sleep-haunting worries. 

And yet, the same slow clock that brings pain…it is also the same slow clock that bestows an extraordinary gift to those who bear its slow ticks: 

Tap

Tap   in mere seconds

Tap                  I can pack more life

Tap                            and more joy

Tap                                    and more love

 

TAP.


than any racing, rushing, reckless second could ever claim….

I can live so much more—take me on a run under a winter sunset sky, and in just a few lousy seconds, I can pick out every blue hue and red streak and purple haze—not from the sky above—but from the galaxy of sparkling snow crystals that reflect them…like colored comets on the drifts. 

I can let joy find me more—I passed a med school bio exam the other day. (Paused here) That’s all you gotta know. You want to talk about joy; that’s huge! In the mere seconds that I saw my grade…whew…elation! 

And I can love so much more—in just seconds. You know some time ago I went on a first date. She’s here tonight. And I promise: a hundred or a thousand dates later, when she laughs, when she calls me “ry,” when, with a lone smile, she breaks away my worries…heaven’s elusiveness—in seconds—is with breathtaking splendor, lost for my eyes only.

For me, the worst part about cancer has also been the best part. I can promise that each of you can, with a conscious effort, enjoy the better side of that slow clock. And so tonight I challenge you, as THON approaches, to slow down your seconds, and pack them with all the life and joy and love you can muster into them.

And yet for all this talk about time, I will not tell you tonight to seize the day. For what are days? Minutes? Seconds?

You see it’s no coincidence that these seconds:

Tap, Tap, Tap, Tap…

 

Are ruled by these: (held heart)

Tap-tap, tap-tap, tap-tap, tap-tap, tap-tap…

Ladies and gentlemen, do not seize the day, for what are days and minutes and seconds? Instead, as the little girl you’re about hear about did always…seize your heart.

 

 

 

 

 

 

 

 

Filed under Inspiration Family Friday FOTW Family of the Week

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Family Friday

2010 THON Family Hour Speech

by Sabrina Carruthers-Parraga 

Every day is a gift and holds the possibility of a miracle.  In my case, three miracles!  My name is Sabrina Carruthers-Parraga and I am miracle number one, a long-term Four Diamonds cancer survivor.  Because of the love, determination and hope of THON students, not only was I able to live, but the next generation was able to be born.  Here are miracles number 2 and 3, my children, Isabela and Octavio.  Along with me is also my husband, Cristian, my mom, Sherri, who works for The Four Diamonds Fund at Hershey Medical Center, and my sister, Ashley, a PSU alumni and THON dancer.

My story goes way back to the year 1984.  I was just 4-years old and diagnosed with Acute Lymphoblastic Leukemia at Hershey Medical Center.  The doctors gave my parents the grim news of a 40% chance of a 5-year survival.  I remember my chemotherapy treatments all too well.  Countless times of losing my hair, spinal taps, blood transfusions, powerful and painful chemotherapy injections, horrible tasting oral medicine, laying in a hospital bed, bruising, vomiting, weakness and crying.  For 2 ½ years, I received the medical care necessary to treat my leukemia, with support from The Four Diamonds Fund and its wonderful and dedicated medical and social support teams.  This was also the time of my first THON.  THON was in the White Building - raised $226,508 and was an unbelievable experience for a first-timer.  I forgot for one weekend that I was a very sick child.  I instead enjoyed riding shoulders and water gun battles with THON dancers, laughing with other kids who looked just like me, and of course learning the line dance! 

As things were starting to look up, my luck took a turn for the worse and I relapsed with leukemia in 1989, at age 9.  This news hit my family like a ton of bricks.  I remember asking, “why me God? Why me again? I’m just a kid!”  But anyone who has had a loved-one diagnosed with cancer knows cancer is not choosey and no one is exempt.  This time I was treated harder and longer with some new chemotherapy drugs being part of my normal protocol.   Just as the treatments and success rates for cancer survivors grew, so did THON… moving in 1999 to the Rec Hall and then again in 2007 to the Bryce Jordan Center. 

Despite all odds, I am alive today.  After two tough rounds of chemotherapy and many, many bumpy roads … I beat cancer!!! Like the advancements and growth of THON over the past 25 years, so has the childhood cancer survival rate improved significantly. Today, children diagnosed with my same type of childhood cancer that I had, have an 80-90% chance of cure.  Because of your support of research study and superior medical care, THON has helped over 2,000 children treated at Penn State Children’s Hospital.

Because of your support I stand before you today to say thank you, from the bottom of my heart, for helping to give me hope and a chance at life.  Because you cared, I am a Four Diamonds cancer survivor, I am blessed to be 30 years-old, I enjoy being the wife to my best friend, I am a teacher to middle school students, and I am forever grateful to have fulfilled my dream to be a mother to these two precious children, Isabela and Octavio. 

THON students have raised $61 million dollars for The Four Diamonds Fund so far and I say let’s keep fighting and raising money until childhood cancer is a thing of the past. Thank you for dancing like you have never danced before, because these kids are fighting for their lives like they never have before. THON on!!!!

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Filed under Family Friday Family of the Week FOTW

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Family Friday

The Brandon Loose Family


Brandon was the average 4-year-old boy, loved playing sports-didn’t matter which sport, until February of 2004.  He started with leg pain so bad it would wake him up at night.  We took him to several doctors in our area, they all said the same thing he needs a psychiatrist.  After hearing this so many times and knowing our son, we decided to take him to Hershey Medical Center.  Cindy Riker was the first person that actually listened to me and heard me.  I will never forget her name.  She made Brandon an appointment with Dr. Groh on April 8th.  Dr. Groh ran many tests and came to us and said to “hope he has leukemia”. Our hearts stopped.  He also made an appointment with the oncology department for the next day.  Brandon had the first of many bone marrow biopsies that day.  The test confirmed Brandon did not have leukemia, it felt like a weight was lifted from our shoulders, and then they dropped it even harder.

They told us Brandon had Neuroblastoma.  Now I understand why we were to hope for leukemia. Leukemia has a 90 percent cure rate, Brandon had Neuroblastoma, which only had a 40 percent survival rate.  We had a battery of tests to confirm this diagnosis.  April 10th, 2004, it was confirmed Brandon had Stage 4 high-risk Neuroblastoma.  There are only 4 stages of Neuroblastoma; we were at the worst stage.  He had tumors throughout his body and his bone marrow was 95 percent full with disease.  We started chemotherapy immediately.

During our first day in the hospital, many people from the hospital came to see us. The one I remember the most was Greg.  He is a social worker for Hershey Medical Center and the Four Diamonds Fund.  Greg was like a whirlwind, he gave me papers to read, to sign, to fill out. I think he told us about the Four Diamonds Fund, but I didn’t remember until we got the letter in the mail stating that we were officially a Four Diamonds Family.  At the time, we had no idea how much the Four Diamonds fund would help us.

Throughout the first 15 months of cancer, Brandon went through 6 rounds of inpatient chemo, a stem cell harvest, an 8 hour surgery to remove the original tumor and some lymph nodes, one round of intense chemo, followed by a stem cell transplant. He had 18 rounds of radiation to the original tumor site. Then, 6 rounds of accutane, plus numerous hospital visits for follow up appointments and stays for infections.  July 31, 2005 Brandon was officially in No Evidence of Disease status.

He started 1st grade that year, he was our “normal” boy again.  In April he was skateboarding with his brother, and if it weren’t for a skateboarding accident we would not have found the lump that would start the nightmare all over again.  With Neuroblastoma, after relapse the survival rate goes down to 20 percent and usually children die within the first six months of relapse.  Brandon was older this time, so he helped make decisions with his treatment, his first choice was 10 rounds of outpatient chemo.  We traveled to Hershey everyday for a week, then several times a week for 3 weeks for blood work and check-ups.

After the 10 rounds of chemo, we were told it was hurting him more than helping so Dr. Powell wanted us to take him to Children’s Hospital of Philadelphia to see Dr. Maris.  Dr. Powell told us to go with an open mind.  The first time we went Brandon had to have blood work done, he had a mediport and the nurse had to access it to draw blood.  After she accessed him, he looked at me and says “Holly does it better”. He was a very honest kid.  The first treatment we tried did nothing except give the cancer time to grow.  So in April of 2007, we tried MIBG Therapy, which is radiation put directly into his bloodstream, this therapy worked wonders, most of his tumors were gone and bone marrow only had 15 percent of disease.  So Dr. Maris recommended we do the same thing again.  We did and it was great, all tumors gone and less than 2 percent in his bone marrow, he needed to have a stem cell rescue afterward. 

Now it was time to keep the disease under control, we did another trial, which unfortunately didn’t work.  All the treatments done in Philadelphia were Phase I trials, which means there is really no way to tell if it would work or not.  We were still going to Hershey all along for blood work in between trips to Philly.  So we tried yet another one and after that didn’t work, Dr. Maris recommended we go back to Hershey. 

We went back to Dr Powell in Hershey and did the same chemo we started with in 2006—we are now in 2008. So far we had an extra year with Brandon than most parents get.  We were told a few times that he wasn’t going to make it.  Those times Brandon showed them he wasn’t going down without a fight.  We tried different chemos to make the cancer go away and to keep our boy from having pain. 

We also did many things as a family, we went on vacation to Washington D.C. In August of 2008, he went to Camp Can Do and had the week of his life.  He had so much fun he cried when it was time to go home.  In September, we did the Four Miles for Four Diamonds walk.  Brandon started and finished the walk on his own. October 2nd was the day we found out our time with him was limited, his liver was shutting down.  Dr. Neally said it could be days, weeks, or months.  On October 3rd he had a sleepover with two of his best friends.  October 4th was spent with family and friends stopping by, Brandon was still the happy kid we love.  October 5th he slept a lot, the only time he woke up was when his favorite nurse and her husband who he called his step mom and step dad, stopped by to see us. 

That was the last time Brandon was awake.  October 6th at 3 am I went to bed, before I went to sleep I talked to Brandon.  I told him we are not giving up on him; we will fight as long as he wants too.  Then I said something to him that I thought I would never say to any of my children and that is if he’s tired and he wants to go fly with the angels it’s ok.  I told him I would take care of his daddy, and his brothers and sister, and that I would be ok.  And sometime between 3 and 5:30 A.M. Brandon went flying with the angels. 

Brandon had a wish box that no one was allowed to look in.  We looked that day; there were three wishes in his box.  The first one was to marry his girlfriend Sophie, the second wish was that all his pain goes away now that he’s in heaven he is perfect.  And his third and final wish is one I am trying to make come true for him.  And with the help of all of you we can make this wish come true.  It is to find a cure for cancer. 

Brandon Adam Loose was born June 13, 1999 and flew to the angels October 6, 2008.  He taught us so much in his short life, he taught us to care for people, to live life to the fullest and to never give up no matter how much it hurts.

            Thank you for listening to the story of our son, brother, and friend.

            Brandon’s family  

 


 

 

Filed under Family Friday FOTW

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Family Friday

Mom & Dad Remember Felicia’s Hospitalization (7/31/98-10/1/98)


The following was written by Deanna & Kevin Rupp, Felicia’s parents, as a way to share the experience with everyone.

Felicia was a very brave young lady, battling cancer not once but twice in her short life time. In April of 1993, when she was just seven years old, she collapsed at school and was subsequently diagnosed with a cancerous brain tumor. After removal of the tumor, she endured a summer of intensive chemotherapy, six weeks of daily radiation and then a year of “maintenance chemotherapy”. She was then considered “off treatment” but not “in remission” due to the fact that her cancer was an adult type of cancer (glioblastoma multiforme). That meant that she had to go at least until she was 18 to be considered in remission.

Felicia then struggled and perservered to get back into school and the normal life of a young girl, and she did it with such determination we were blown away! She continued “off treatment” and surpassed her five-year mark of being “off treatment” in April of 1998. We were thrilled but knew that we had to make it to her 18th birthday to feel totally “out of the woods”. That day would not come.

On July 25th, 1998, Felicia came down with a stomach bug, which usually ends after 24-48 hours…hers just wouldn’t subside. After four days of continuous vomiting and diarrhea, we took her to Hershey Medical Center to be seen by her oncologist. They admitted her routinely to hydrate her and run some blood tests. The results were devastating. Less than 48 hours later, a bone marrow test, a spinal tap and too many blood tests to count, we had concrete results—-Felicia had “secondary leukemia”, a second cancer.

As we broke the news to Felicia, her first question regarding her upcoming treatment (chemotherapy) was “Will I lose my hair again?” Our answer was “yes”. She had just turned 13 years old, had just celebrated the five year anniversary of the removal of her brain tumor and was looking forward to starting school in another month. Instead, we were telling her she would most likely be spending the next two months in the hospital due to the length of time it would take for her blood counts to recover after the chemotherapy. She took this news relatively well, although a little quiet, with few questions.

The day after we broke this news to her, she began the 10-day cycle of chemotherapy. From this moment on, Kevin (Dad) spent most of his time at the hospital, spending every night there on the “bed” built in for parents (but not made to sleep on too many nights in a row)! His dedication and devotion to Felicia were amazing! She tolerated the medicine fairly well, with the usual vomiting. She was still fighting the virus that brought her into the hospital in the first place and was in the bathroom more than she wasn’t. She was getting weak but still had her sense of humor. She always perked up when she had visitors, especially her five brothers and sisters. She especially loved seeing her newest addition to the family, her baby brother Lawrence, who was now 9 months old. Somewhere between the first and second week, a small tattoo-looking circle appeared on her upper left arm. Dermatologists were called in to test it and it continued to grow and grow and it was determined that it was most likely a fungal infection, which can occur in patients with low blood counts. Her primary oncologist told us that this could be threatening if her blood counts didn’t start to go back up to fight this infection. In the next couple of weeks, the spot on her arm grew larger and more tender until it was giving her a lot of pain. They ran tests over most of her body trying to determine if the fungal infection had spread anywhere. After several xrays and tests, spots were found on her lungs.

Approximately two weeks after finishing her chemotherapy, Felicia’s hair started falling off…it was literally everywhere and it was driving her crazy. It was itchy, it was messy and just a pain in the butt, as Felicia put it so bluntly! She decided that she wanted Dad to buzz it so at least her hair would be short strands falling out. Upon buzzing her hair, she wanted to do “something crazy”, to use her words, and we decided to get a temporary hair color and dye her hair. She wanted purple but settled for blue because the only purple coloring we could find was permanent! One afternoon, we dyed her hair blue (see above picture), put her in a wheelchair and paraded her down the halls, where many doctors, nurses and passers-by stopped to comment on her blue hair. It brought a smile to her face that we hadn’t seen for a while and she loved the attention! The funniest thing is that although this color was “temporary”, her scalp stayed blue for weeks after all her hair fell out. It even stumped new doctors and nurses who would try to consider the reasons that her scalp had turned blue! We really had fun with it!!

About this time, approximately four weeks into her hospitalization and three weeks post chemotherapy, Felicia’s blood counts were still not coming up and she was getting weaker and weaker. They began transfusing red blood cells, white blood cells and platelets daily, hoping to help her blood counts recover. She was running high fevers and incoherent much of the time that she was awake, which was less and less. On August 29, Felicia was transferred to the Pediatric Intensive Care Unit (PICU). She spent the next nine days in PICU where she had erratic heart rates, low blood pressure, high fevers, and problems urinating (kidney and liver function problems).

They were able to stabilize her, although she was not really awake any more. She was moved back to a room in the oncology wing yet still considered in “Intermediate Care”, so she required more care and assistance from her nurses. She was now in diapers and she needed to be changed and repositioned every two hours to avoid her getting bed sores. This was the part of her treatment she hated the worst…and she let whoever was changing her know how she felt! About this time, they confirmed the spots on her lungs as “fungal pneumonia” and also found some spots on her brain stem, although they weren’t going to do a lot about them until her blood counts started to show some improvement. She remained in this wing for another week until she was once again transferred to PICU, where she spent another week battling her blood pressure going too high or too low and daily high fevers. She was still receiving the three different blood transfusions daily but there were no signs of her blood counts recovering.

On September 22, Felicia was moved back to the oncology wing to the original room she was first hospitalized in. A few days after being transferred back to this wing, her primary cancer doctor talked with us about the measures we want taken if and most likely when her organs began to fail or she had trouble breathing. This was one of the hardest moments of Felicia’s hospitalization. She wasn’t really with us any more because she hadn’t been awake for so long, yet this was concrete proof that she most likely wouldn’t come back to us. We listened to the doctors recommendations and expectations for Felicia and then spent the rest of the afternoon discussing our wants and hopes for her. We were told that the longest anyone has gone until their blood counts had recovered with the type of chemotherapy she had received was five weeks….Felicia was now at eight weeks with no signs of her blood counts recovering. Upon hearing that, we made the final decision to put a “Do Not Resucitate” order in her chart and decided that no matter what, we didn’t want her transferred back to intensive care.

This was probably the time we prepared our other children for Felicia’s imminent death. Ranging in age from 11 months to 13 years, it was a difficult thing for us to explain and it was a difficult thing for them to hear. Our oldest daughter, Monica, who is just four months older than Felicia, cried at first and then decided she would spend all the time she could with Felicia before it happened. For the last few weeks, our visits with Felicia were usually without the kids because she wasn’t awake to know they were there and there wasn’t a lot for the kids to do for hours at a time. After telling the kids Felicia’s prognosis, they all went to the hospital for another visit to actually talk with Felicia and see her, although she was still not awake and was still hooked up to all the machinery. Our 6-year-old daughter was scared seeing her sister this way and it was hard to see her reaction, but it was quite understandable. Monica spent the next weekend by Felicia’s bedside talking with her and fluffing up her pillows and arranging her bedding. It was heart-breaking to watch, a loving sister saying a final goodbye to her best friend.

On Thursday, October 1, 1998, at 9:10pm, Felicia died and went to heaven. Kevin was with her, as he was through her whole hospitalization, and he was there as her breathing became labored and he told her “Felicia, if the angels have come for you, you’d better go!” What a loving father and compassionate man. Kevin called two women from our church who had been close to us throughout Felicia’s illness in order for them to come to the house and tell me in person about Felicia, and so I wouldn’t be alone when I got the news and woke the kids to give them the news. I appreciated that gesture more than he’ll ever know. As I went from bedroom to bedroom, telling the kids and telling them to get dressed, it wasn’t very real yet.

We made the final drive to Hershey Medical Center to say goodbye to our daughter, our sister. We got there close to midnight and were greeted in the hallway by Kevin and two of Felicia’s favorite nurses, along with some other nurses. As we entered Felicia’s room, we found her lying peacefully on her bed with the lights turned down low, no machines connected to her and her favorite CD “Dreams of Angels” playing in the background. She looked so peaceful and at rest that I was glad we had all come to see her.

As we made arrangements for Felicia services, we decided that she would not want everyone sitting solemnly in the church crying. Felicia’s life was a story to tell and a life to celebrate and that’s exactly what we did. We called it “A Celebration of Life”. Complete with purple balloons and MAKE-A-WISH Foundation clowns, the atmosphere was an uplifting one. Felicia’s fellow classmates from Ephrata Middle School sang a moving rendition of “Amazing Grace” and four different people spoke about her lasting memory in their life: her elementary principal, Mr. Tom Legath; her sixth-grade homeroom and language arts teacher, Mr. Paul Sellers; her primary care nurse, Ms. Amy Tubbs; and her loving father, Kevin Rupp. Our pastor also said a few words before the entire congregation listened to “ANGELS AMONG US” (by Alabama). It was a very meaningful way to say our final goodbyes, and our final thank yous….for making life so joyous and for helping us realize how precious life really is.

 

Filed under Family Friday Family of the Week FOTW Rupp

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Gabe Angus and THON Express

This is the story of Gabe Angus and his family, the people behind THON Express. I hope you find it as inspirational as we do. 

All too often in our day to day lives we like to think of ourselves in control.  We plan our every moment and convince ourselves that we are not prone to harm.  This is folly of course.  We all eventually succumb to some kind of mishap or misfortune.  For most of us these mishaps are minor blips on the screen of life.  Yet for others the misfortune is deeper.  It is life changing.  It runs deep, all the way to the soul of our being.

One of those misfortunes has happened to us, and this is our story.  On a beautiful fall day we traveled to Penn State in State College to watch the Lady Lion field hockey team play.  My lovely bride, Connie used to be the goalie for the Lady Lions.  Our son Gabriel and our two daughters Veronica and Sydney were with us.  Gabe was four years old, Veronica was two and Sydney was a newborn.  It was a good game, and honestly I cannot recall who won, but I do remember that Gabe was so weak that I carried him all day.

He had been complaining about his legs feeling tired all summer and it seemed like his energy level had been dropping with each passing day.  Connie and I agreed to have him checked out the next day.  We went and had him checked out and they took his blood.  In the middle of the night the phone rang.  Those calls in the middle of the night are never good.  Gabe’s pediatrician told us we needed to get Gabe to Hershey Medical the very first thing the next morning.  Needless to say, we didn’t sleep very much that night.

We arrived at Hershey Medical the next morning.  They took his blood.  I remember it slowly filling up the vial.  It wasn’t the normal deep dark red that I was used to seeing.  It was more like cherry Kool-aid.  You could see right through it.  I knew in my gut that there was bad news coming our way.  At about five P.M. we got the news. Leukemia.  Connie almost fainted.  I grabbed her and took her to the hallway.  I asked her not to cry, and to remain strong for Gabe.  We both gathered ourselves and went back into the clinic room. 

Gabe was admitted that night to the 7th floor.  I spent the night with Gabe, and Connie drove home to our girls who were with their godparents.  The emotions were fast and overwhelming.  Was my son going to die?  Will this be my last night with him?  Am I going to be talking to him over a gravestone?  How are we going to pay for all of this?  Is our medical coverage going to cover part or all of his treatments?  What are his chances?  The list goes on and on.  All the while, I am worried for my wife, my daughters and our future.  In twenty four hours, everything that we thought was important was no longer relevant.  The only thing in that moment was the life of our son Gabriel.  Late that night after Gabe had fallen to sleep, I drifted off despite the beeping monitors and the worry that this may be the last day with my son.

The next day brought a new set of worries.  We didn’t know what kind of leukemia Gabe had.  There were two choices, AML and ALL.  Trust me, this isn’t a choice anyone should have to make.  Fortunately, for Gabe and us it was ALL.  His chances for survival were much better with ALL as apposed to AML.  This was as good a news as we could get, but the next news would change our lives forever.

A case worker by the name of Greg, who worked for the Four Diamonds Fund, told us that we would not pay a dime for Gabe’s treatment and that the FDF would pay for all expenses above and beyond what our insurance wouldn’t cover.  We had no clue what the FDF was, but what a relief it was to know that we could just concentrate on getting our son better and not worry about medical bills.  Most people would say this is the end of the story.  No.  It was just the beginning.

Gabe started his treatments.  At first because of his blood transfusions, he actually seemed better, but over the next thirty days his downward progression was steady if not frightening.  His hair came out in clumps on his pillow, and he refused to let us cut it.  His skin color became a sickly white, and his muscles slowly waned away.  He looked malnourished.  His preschool teacher came over to see him.  He was asleep.  When she saw him, she burst into tears and could not control her sorrow.  This was a common experience for us.  Someone would come over to help us, with meals, or help watch the girls, and when they saw him they would cry and we would console them.  Some would say that they were selfish, but we know better.  We knew why they cried.  Even though it was not their son or daughter, it could be.  The reality was too close to home, such sorrow.

One morning while I was in my office Gabe walked by and fell to the floor.  I had thought he tripped on something, but by the end of the day he could no longer walk.  The chemo had done him in.  It was quite awhile until he walked again.  I had to carry him everywhere including the potty where I had to hold him or he would fall off like a sack of potatoes.  Through all of this we tried to remain upbeat and positive.

Near the end of his first thirty days, Gabe became so weak that we had to feed him.  Wherever we put him, he remained, like a lump of clay.  There was no laughter at this point.  The only one that could even get a smile out of Gabe was little Sydney.  She would crawl up and tease him until he would laugh.  This was the hardest time for me.  To this day, I cannot recall those days without tearing up.  I don’t see this ever changing.

Gradually, over time Gabe got better.  Sydney and Gabe learned to crawl and then walk together.  I started Gabe with a walker that the FDF had paid for.  I would make him walk to the potty.  The first day I did all of the work, but each day he got stronger and over several week’s time, he no longer needed the walker.  After that we taught him how to go up stairs.

In the spring we got a strange phone call.  “Hello my name is Travis Hoffman and I am with the Student Red Cross club.  We are your Penn State Student organization.”  We didn’t understand at the time what that meant.  We did not know that each Four Diamonds family is adopted by a student organization and really becomes a family.  We did not know, that this group of kids from 100 miles away was going to change our life forever.  “Mrs. Angus what can we do to help?”  We were speechless.  Here was a total stranger offering to help us when quite frankly others were afraid to get near us.  We heard someone say once that having cancer is like being a leper.  Everyone knows it exists, but want you to stay in your cancer colony, as if they might catch it.  I suggested that several students come to our house to play with the kids.

About five students made the trip.  We went outside and played and played.  When Gabe got too tired to be on his feet, they carried him.  We laughed.  We laughed more in that one day than we had in the 6 months prior.  That day started a tradition of sorts.  Now, during several times a year we have the Student Red Cross kids down.  We make the now world famous Angus burgers and spend at least one weekend a year helping them raise money for the FDF.  They are our family now.  Imagine having all of your medical bills being paid for and gaining a huge family to boot.  Wow!

Gabe is nine years old now and is doing well.  In his second year of treatment while in training for a marathon in his honor, my wife and I came up with a crazy idea of running from Hershey Medical Center to Penn State’s annual THON dance which is where a lot of the funding for the FDF comes from.  We wanted desperately to give back, for saving our son’s life, for giving us hope, for giving us a family when we needed it the most. 

That crazy idea is now entering it’s fourth year.  It is called THON EXPRESS.  Fifteen runners carry letters of thanks from four diamonds families to the dancers at the 46 hour no sitting dance marathon in State College held every year in Feb.  The letters are put in a backpack and relayed the 135 miles nonstop through the winter night.  Each runner completes three 3 mile legs and the team runs together the last mile to the Bryce Jordan Center where they enter onto the stage to greet the dancers.  Our fundraising efforts have been modest, but our goal has been to raise awareness in the communities in which we run while trying to raise money for the FDF.

There is much to the Four Diamonds Fund which we could tell you.  Let us just say that there is almost nothing we wouldn’t do to pay it forward. 

 

135 miles in 24 hours FTK

Hank, Connie, Gabe, Veronica and Sydney Angus

Filed under Family Family Friday Family of the Week THON Express

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Family Friday

This Friday, we have the story of the McCauley family, as presented by them at a Mini-THON workshop.

We’re Mike and Patty McCauley and these are our sons Ian and Lachlan. We would like to thank you on behalf of the Four Diamonds Fund and all the Four Diamonds Families for your generosity and the opportunity to speak to you today. Our story is like many you already know, unfortunately. Our lives changed dramatically in November of 2006. There still may be no feeling quite like the one you get when you hear the words “Mr. and Mrs. McCauley your son has cancer”. It is still difficult to say those words. Lachlan was diagnosed with a very aggressive malignant tumor behind his right eye called “rhabdomyosarcoma”.

The 6 months that followed were a brutal schedule of chemotherapy, blood counts, week stays in the hospital for fevers and transfusions, and finally radiation. It takes its toll on everyone and remains the most challenging of our lives. The long hospital stays when Ian and I were home so I could put him on the bus for school while his brother had treatments were brutal. The sleepless nights, being apart, wondering what tomorrow will bring. The questions over breakfast, “Daddy is Lachie gonna die”.  Reconciling that the medicine that was killing him was necessary so he could live. The ravaging of the little body that never did anything to anybody, just wasn’t right. The frustration of not being able to explain to him, to have the answers, when he would look at you and seem to say “Daddy do something”…….. make it go away. Saying “I love you, good night” over the phone to my wife, knowing she will sleep next to his hospital bed while holding his hand. Drawing strength from his frail body, as he would put his arms around me and say in a whisper “I’ll be ok Dad.” We know clearly what being scared and overwhelmed feels like.

What we didn’t know at the time was that there were people who had been down this road already. People who new exactly how we felt. People that new there were ones before us and that there will be, unfortunately, ones who come after us. We were not alone then and we are not alone now. These people are those of, and supported by, the Four Diamonds Fund and they are very special to us. This is why we are here today, to say thank you for what you do in support of them. We have a deep sense of gratitude that words simply cannot express. As you know, this fund exists because of the generosity of many, but also because there is so much to do. There are so many who need you, who need you to care. There is a whole floor of kids at Penn State Children’s Hospital right now believing, praying, that tomorrow brings hope. So many kids whose measure of success is writing the number of days cancer free on their hospital room door, but who are still too much at risk to go home. The 4 Diamonds Fund is there, Penn State Children’s Hospital is there, but they need our help.

Our THON story

As a Four Diamonds family, we were fortunate enough to be paired with a THON sponsor group at State College, The Penn State Lion Scouts. We attended our 2nd THON in February and had 5 dancers participating.  It was overwhelming at times to see the words “courage”, “wisdom”, “honesty” and “strength” personified. We see it here again today. The THON experience, next to the day we got married, and the birth of our sons is the most moving experience of our lives. The magnitude of what is accomplished through the year and the culmination of all the hard work is breathtaking. It is truly life changing. For us, the most moving aspect of THON is how so many young adults like you really understand. We are inspired by you, and those like you who have seen the need to be involved. You should be proud that you are part of that. We believe that one day you will look back on your involvement in this and recognize that it is one of the most meaningful things you have ever done. We certainly do. Your involvement brings the THON experience to our own back yards. The exposure and awareness that you give to your friends and families and the community and the effect it has transcends the monetary. You bring hope, and for us hope found a way. 

So far we are a success story. This is no question, we are winning. We have had some trying times in the last 2.5 years. We have a long road ahead of testing. But, no matter how you say it- he’s 28 month, or he’s almost 2.5 years, or he’s at 858 days; the sentence ends the same…..CANCER FREE. We owe a great deal to these people, and as I’ve often said, a debt we can never repay.

So many times we are asked to volunteer our money or time to a cause, good causes, but when you think about it do you ever really see the results of your efforts. When you participate in these events, it may be enough for you to know that in some small way you have helped someone. To us, however, it isn’t enough that you think that, and we wanted to come here to show you that you have. We wanted to share a little bit of us with you today. We wanted to show you how with your help, there can be more families like ours, more success stories, and less uncertainty, pain, and sickness.

Our motto is BELIEVE, and this is about believing, believing that you can change lives. Believing that being involved can save someone’s life. Believing that if we come together in this fight, one day we WILL dance in celebration. What you do works, we are living proof and so we stand before you, hoping that for you, seeing is believing.

Filed under Family Friday Family of the Week

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How The Grinch Stole THON

This Friday, we’re bringing you a twist on a classic Holiday story. Written by a THON Captain, here is the story of How the Grinch Stole THON

The Lions in Happy Valley liked dance maraTHON a lot, but the Grinch that lived on top of Mount Nittany did not. The Grinch hated THON with all of its joy. He hated the giving to little girls and little boys.

It could be his head wasn’t screwed on quite right, or maybe he just didn’t know wrong from right. But I think the most likely reason of all, may have been that his heart was 10 sizes too small.

From November to February, year after year, he watched as the Lions fought for the cause held so dear. And he cursed all their efforts, and he sneered at their rants, and he even despised the beloved line dance.

While he watched with a frown, the Committees were chosen, and quickly his heart became even more frozen. He watched as the Lions went door-to-door, and the Grinch hated THON every day more and more.

"Curse those Lions, and their big heart," sneered the beast. "If only I could ruin their cause in the least." And he waited and saw as registration took place, and he noticed the dancers and loathed every smiling face. Kickoff dinner came then, soon after, and the Grinch cringed and shook at the sound of the laughter. "I must stop this THON!" thought the Grinch as he scowled. And he fumed and he fretted and pouted and howled.

Then he got an idea.

An awful idea.

The Grinch got a wonderful, awful idea.

“I will steal their dance maraTHON,” he thought with a grin. “I will take all their joy, and at last I will win! I will take all their cans, and their signs and their pledge books. I will take their kind wishes and happy, caring looks. I will take their theme hours, their committees and treats. I will steal their clean socks and new shoes for their feets! I will sneak to Happy Valley, and their THON I will take. Then I’ll watch from Mount Nittany as their hearts fall and break!”

So the night before THON to the BJC he crept. And he tore down the “walk” and his tiny heart leapt. He packed all the signs, and the banners and food, and he put them away and he sealed them up good. He kidnapped the Captains, and guests and moralers. “Let’s see them try to get through 46 hours!” And he laughed as he thought of the heartache he’d bring. “At last, I have ruined this maraTHON thing!”

And when he had the trappings all tied up and bagged, and when he had Kirsten Kelly all bound up and gagged, he fled to Mount Nittany with the cargo in tow, to await their reactions from the cold mountain snow.

The next afternoon, precisely at 7, the Grinch looked toward the BJC from the heavens. And he wrung his hands with grim, evil glee, with the hope of some sad, tear-stained faces to see. But to his surprise, no cries did he hear. Not even the tiniest lack of good cheer.

From his perch on Mount Nittany, the Grinch heard a sound, and it caused his weak, little heart to pound. With each passing second, the noise became louder, and it reached the Grinch laying in the snowy, white powder. And the Grinch realized from the place where he hid, that the Lions were chanting the phrase “For The Kids.” 

And the Grinch knew at once, that THON had not ended, and that no child’s heart would need to be mended. You see, the Lions were there in the BJC that day, and their voices were proud and their songs were still gay. And the Grinch stood up quickly, and growled with fright. “How could it be that they still dance tonight?” They danced without moralers, they danced without themes. They danced without Captains or JoePa or teams! They danced without presents they danced without praise, but they kept right on dancing for two-straight, full days!        

                                                                           
And when the Grinch saw this, something happened to his heart. It turned into a diamond, split up in four parts: Courage, Wisdom, Honesty, Strength. And it was 12-inches high and 10-inches in length.

The Grinch flew down Mount Nittany, with the speed of a hawk, and he helped the Captains re-assemble the “walk.” And he joined in the theme hours, and he played with the kids, and he never went back to the place he once hid.


And every year after, the Grinch danced at THON, and he preached that its spirit should live on and on. Not just in Happy Valley, but all places far and near. May the giving spirit of THON last throughout the whole year.

Filed under Family Friday How The Grinch Stole THON Grinch Holidays