Teen Hero Featured in Local News
Who knew an email from Connor's Heroes would lead to an amazing news story about our Hero D'Marco? In our August email, I shared the video of D'Marco's high school graduation speech. Thousands of people watched the speech. Amy Lacy, co-anchor for Channel 8 News, contacted me because she was so moved by D'Marco's amazing spirit. So, Amy donned a hospital gown and mask for her interview in his hospital room. Amy did a wonderful job of letting D'Marco encourage everyone, especially young adults, to register and be swabbed through Be A Match. Miraculously, a match has been found -- someone in Brazil. The transplant is being flown in and D'Marco will begin his bone marrow transplant this week. Connor's Heroes will continue to help D'Marco and his mom. Our volunteer and her friends made his hospital room feel more like a home. He will have plenty of gift cards for meals, gas, groceries. And we'll cheer him on as he reaches Day Zero (his new birthday).
If you are moved to help a teen such as D'Marco, you have two opportunities: Donate to Connor's Heroes in support of outreach to children and teens who are in the Bone Marrow Transplant Unit and register on www.BeTheMatch.org. Be The Match is in need of young adults who can help teens such as D'Marco.
Announcing Richmond’s First Endowed Chair in Pediatric Research
The Connor's Heroes Foundation Board of Directors, along with co-founders Steve and Lisa Goodwin, are delighted to welcome to Richmond Seth J. Corey, M.D., M.P.H, as the first endowed chair in pediatric cancer research. He will conduct research at the VCU Massey Cancer Center with funding provided, in part, by the Connor's Heroes Pediatric Cancer Research Fund. His position starts effective October 1, 2015. In honor of this important announcement, Connor's Heroes produced a new video to showcase the programs we provide to more than 100 families each year who are in treatment at Children's Hospital of Richmond at VCU. Featuring parents who've been helped by Connor's Heroes as well as Lisa and Connor Goodwin, this five minute video reminds you how easy it is to be a hero to a child battling cancer and why we need research focused on cancer's youngest heroes.
Dr. Corey received his undergraduate degree from Yale and his medical and graduate degrees from Tulane. He completed his residency at St. Louis Children’s Hospital and his fellowship at Boston Children’s Hospital/Dana-Farber Cancer Institute. After his fellowship in Boston, he spent 10 years at Children’s Hospital of Pittsburgh, 6 years as Chief of Pediatric Leukemia and Lymphoma at MD Anderson Cancer Center in Houston, and the last 8 years at Children’s Memorial Hospital in Chicago as the Murphy-Rosen Research Professor of Cancer Biology and Chemotherapy.
Dr. Corey has served on numerous committees, received many Top Doctor awards, served on loads of editorial and review boards, is a grant reviewer for many organizations including NIH, Leukemia & Lymphoma Society, Alex’s Lemonade Stand, American Cancer Society, and more. He is a prolific author and speaker, publishing well over 100 articles and, most recently a book.
Dr. Corey and his Alejandra, have four grown children, Leah, Max, Tomás, and Federico.
Guest Blogger: Savanna’s mom, Kelly
Imagine having your children in the hospital at the same time. Eight-year-old Savanna was in the bone marrow unit fighting for her life while her 11-year-old brother was in the bed next to her saving it. He was her bone marrow donor. Mom, Kelly, shares her journal entry from that day. This is the fourth in our series during September’s Childhood Cancer Awareness Month.
October 27, 2014: It’s 5 a.m., maybe a little earlier, when my husband started texting to me. I have been waking up without him by my side more often than not these days. Asher, our son, is awake and they are getting ready to make their way to the hospital. Today is a big day for Asher. Today, our 11-year-old son is showing unconditional love to help save his 8-year-old sister’s life. Asher elected to donate his bone marrow when tests determined he was her match. Doctors diagnosed Savanna with acute lymphoblastic leukemia (ALL) five months ago. I’ve been with Savanna in the bone marrow unit at MCV since then. Savanna finished a week of high doses of chemo and radiation to prepare her body for the healthy, cancer-free bone marrow from her brother.
This early morning, Asher went under general anesthesia and had a breathing tube placed in his airway. Once asleep, the doctors pierced his bone with large needles (he hates needles). Dad and I were in the pediatric waiting room with the kids’ grandparents. We wait for news; our stomachs in knots.
My phone buzzes. It’s my brother texting me from the other side of MCV. He and Savanna want to check on Asher. I thank my brother for staying with Savanna. I thank Savanna for being so brave to let mommy and daddy be with Asher while he is in surgery. Right now, Savanna is weak and pale. Her immune system is non-existent. I think about how fragile she is. My stomach is in knots again.
Both my children are in the same hospital, in different units. This is a moment I thought would never happen to my family. I miss our safe bubble. The doctor comes out with an update. Asher tolerated the procedure well. He still has his breathing tube. They took his bone marrow to the lab to be processed.
We finally see Asher. We text Savanna pictures of Asher giving her the “thumbs up.” I was touched that Connor’s Heroes made Asher feel special like they did for Savanna throughout her treatment. Fran bought him a balloon and a certificate in his honor. I have two heroes in my family.
Before Asher is released from recovery, we receive the call that his bone marrow is ready for Savanna’s transfusion! Everyone hustles to get Asher a bed in Savanna’s room. Asher watches his sister get the infusion of his bone marrow that will save her life. Stress, fear, anxiety, awe, joy, gratitude. Love in its purest forms. All felt in the same day. My family is together again.
Unlimited fun in Kid Zone
DiggityFEST is Sunday, Sept 27. The main attraction is the music with Susan Greenbaum Band, Silly Bus and the final performance of The Diggity Dudes. In between sets, your child will have a great time at our Kid Zone sponsored by Chippenham Pediatrics. A $5 donation to Connor's Heroes gives your child a wrist band for unlimited fun. Inside the Kid Zone are tables of crafts, games, fun bounce houses and inflatables. The area is covered by a tent so your child can still play outside, even if it is raining. DiggityFEST happens rain or shine. Our website has all the details about the fun you can have a DiggityFEST.
Let’s have a bake sale for our Hero Families
If you love to bake, then consider baking for Connor's Heroes. We are having an old fashioned bake sale at DiggityFest to raise more money for our Heroes. Cakes, cookies, brownies, whatever is your speciality. Individually wrap them. You can drop them off at the Connor's Heroes office (11512 Allecingie Parkway, Suite E, Richmond, VA 23235) through Friday or bring them to DiggityFest. If you have questions or need more details, email erin@connorsheroes.org or call (804) 897-1272.
Guest Blogger: Grace’s mom, Chrissy
This is the third in our series during September’s Childhood Cancer Awareness Month. Grace is at a crossroads in her journey with cancer. This summer she had her last treatment. Chrissy, her mom, imparts what it feels like to have cancer behind you, yet still with you.
“Done”… as odd as it may sound, is a word that makes me cringe when I hear it said by well meaning friends, neighbors and family members. Our daughter Grace has been going through treatment for Pre-B ALL Leukemia for the past two and a half years. About six weeks ago she received her last chemo treatment. Technically speaking, she is “done.” We praise Jesus for this and we are grateful to be where we are today in this journey! People share their relief for Grace and their sincere desire to see our family “move on” from cancer. The words, “She’s done,” are so final, so indicative of a task that’s been completed.
Yet Grace’s journey is not like that.
There is no imaginary line that she magically crossed the day they pumped the last bag of nausea-causing-fatigue-creating-neuropathy-plaguing-emotionally-draining-sorrow-bringing-hair-stealing-childhood-robbing-bone-marrow-destroying-platelet-smashing, yet life-saving chemotherapy into her veins. The side effects of chemotherapy often affect our children for years to come, if not for the rest of their lives. Grace's counts are still lower than normal. Her immune system is very compromised. She cannot be re-immunized for months and is at serious risk if exposed to certain diseases. She has neuropathy and major fatigue that the doctors say could affect her for a year or more. We still go to clinic monthly for counts checks and there are still medications she takes daily at home. Every bruise, complaint of pain, pale face or warm forehead is scary. What if “it's” back? What if she relapses? I cannot begin to count all the kids we know whose cancer has come back. They too were "done,” but now they are fighting for their lives once again. It's a thought never completely out of the corners of our minds, because we know it's real.
Once you have entered the world of childhood cancer, you become part of a family… a pediatric cancer family. I met Lisa and many parents after Grace registered with Connor’s Heroes. I have wept with fellow cancer moms, some who have lost their babies to this horrific disease. We call one another for advice, to ask questions, to laugh and pray. We walk this journey together in ways others cannot. Our bond is deep and this also is why we do not feel "done" after the last dose of chemo.
None of this means we aren't THRILLED that Grace is finished with chemotherapy. We are! We are excited that she is able to go to school this year. We are happy the port is gone! We look forward to the future and are praying hard the Lord will allow Grace to grow, thrive and continue to be used for His glory in her life!
We will continue to walk this journey with our "cancer family" for life, with all its ups and downs. You see, we may be “done” with chemo but we are not “done” with cancer.
Heroes Run Did It!
More than $11,000 raised for Connor's Heroes. Joe said 116 people rode on the Heroes Run - double the number of bikers for the first Heroes Run last year. We were especially happy that several of our Hero families came to the event and met the people at Hardywood. What better way to build awareness during Childhood Cancer Awareness month than talking to our Heroes themselves. But the star of the show was Ol’ Grammy: the 1983 motorcycle built by Joe and Justin. People lined up to donate to Connor's Heroes for a chance to get this one-of-a-kind bike. If you have a minute, visit the Heroes Run Tumblr site. You’ll smile as you look at the great photos of Joe, his friends, the bands and our Heroes.
If you are inspired to host a fund raiser for the children in Richmond who are battling cancer, contact us. We can help you with the logistics and promotion. Email tom@connorsheroes.org or call (804) 897-1272.
Another Sunday Fun Day with our Young Professionals
Last month we celebrated another Sunday Funday with our Hero families. Emily, Katelyn, Faith, Connor and Emily created wonderful pieces of art with the help of Celia and Connor's Heroes Young Professional volunteer group. We are grateful for Maymont who allowed us to use their classroom space and then enjoy time in the Nature Center. You'd never know that each of these children have faced childhood cancerr. Either as patients or the brave siblings who stood by their sides. If you are a young professional who enjoys working with children, creating art or meeting new people, sign up for notices of our next event. We're planning an awesome '80s Bash with music performed by The Breakfast Club!
Guest Blogger: Dr. Katie Tyson
Continuing our guest blogging series during September’s Childhood Cancer Awareness Month, Dr. Katie Tyson shares an entry from her journal dated August 6, 2104. She wrote it when her son Callen, 5 years old and diagnosed with High Risk Pre-B Acute Lymphocytic Leukemia, began another phase of his treatment.
In just a few hours I will head to MCV for my son’s fourth inpatient admission for chemotherapy. The final two weeks of the Interim Maintenance phase are upon us! Having “been there, done that” three other times, it makes no sense that I’m up at 2:00 am to ruminate. In some ways, it’s eager anticipation… like when you’re afraid you’ll oversleep and miss an early morning flight. Except that our destination is a mere 20 minutes by car. And there’s no worry of being “late” to clinic because appointment times are approximate (at best). And there’s no fear that our hospital bed will be given away as getting chemo is one of the best ways to guarantee a room.
We pack like we would for any trip – but thank God there are no extra baggage fees! Suitcase 1: clothing and toiletries. Suitcase 2: blender, workout equipment, snacks, really good instant coffee, single serve creamers, world’s best travel coffee mug, and one totally amazing pillow. Suitcase 3: iPad, cell phone, gaming system, chargers, trash novel, and People magazine. Carry-on bag: Callen’s Heroes Backpack from our friends at Connor’s Heroes. Far more than a bag of boredom busters and practical items, this backpack is a literal and figurative reminder of the backing we have from the families who have gone before us.
In some ways, this time at MCV is the continuation of a journey begun years ago. MCV is a part of my fabric, my history. It is where I became a doctor, then wife, then mother. In twilight hours, when Callen finally sleeps, I head for the stairwell and climb the 388 well-worn steps as many times as my legs and lungs will allow. As I ascend floors, I reminisce: ERs, ICUs, ORs, L&D (where Callen was born during my year as Chief Resident), pediatrics, women’s surgical, medical-surgical, cardiac, transplant, helipad. Each floor is evocative of past patient encounters: lives ushered in, lives saved, lives transformed (not the least of which, my own) and lives lost. But childhood cancer is foreign territory to me. Yes, it is immensely helpful to know the layout of the hospital, speak the lingo, and recognize the doctors. At the same time it is terrifying to know the layout of the hospital, speak the lingo, and recognize the doctors.
Jim and I have often spoken of this dichotomy - how knowing what we know is a source of both comfort and consternation. For the most part we navigate Callen’s care incognito, as “Mr. & Mrs.,” “Mom & Dad,” with only the occasional tell suggesting more than a crash course in all things medical. Truth be told, no amount of experience could have adequately prepared us for this side of the patient-physician relationship. For parental, rather than practitioner, roles as caregivers for a critically ill child. For being on the receiving end of life-altering news, rather than the bearers of it.
Is it really any wonder, then, that I awaken so early today? I’ve been conditioned by years of motherhood and medicine. These have long been my hours to study, prepare, optimize, fortify. Decades of training being put to their best test. And now, to their best use.
Your $25 donation to Connor's Heroes allows us to give a parent a gift card for something as simple as a decent cup of coffee or a tank of gas.
www.connorsheroes.org/donate
Heroes Helping Heroes
Every picture I see of Katie, she's smiling. I had the joy of seeing her in clinic (where she greeted me with a smile, of course). She presented me with a check for $500 for Connor's Heroes, which she raised by selling rubber band bracelets she made while in the hospital. She also introduced me to her two clinic buddies - Caleb and D'Marco. They were playing a spirited game of Uno when I got there. I shared with you D'Marco's graduation speech and asked you consider registering with the national bone marrow registry to help young people like him. Caleb was diagnosed in May. They are a Trio of Heroes who are facing the biggest battle in their lives - Childhood Cancer - with grace, strength and beautiful smiles!
