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!
Guest Blogger: Emily’s mom, Tammy
Tammy shares the overwhelming experience of explaining her daughter's complex medical history for something as simple as her school's medical forms.
My daughter Emily started 6th grade today. As with the start of any school year, I had a stack of forms to fill out. Name. Address. Emergency contacts. The one I dread the most… her medical history.
“Has your child ever been treated for any of the following?” I see asthma, diabetes, cystic fibrosis, seizures and other conditions, but never cancer. Yet, childhood cancer is the number one disease killer of children.
So, I have to check “Other” and write in… Anaplastic Medulloblastoma.
Next question... “Describe any other important health-related information about your child” Oh boy. Where do I begin? Emily had a brain tumor when she was eight. She was in treatment for more than a year. She had surgery to remove the tumor from her cerebellum; radiation and chemotherapy for six and a half weeks; another round of maintenance which meant high dose chemo in the hospital several times a month. I want to describe the grace and bravery she showed with every test, needle prick and scan.
There are not enough lines on this form for me to write all that cancer put her through.
I have to figure out how to list the long-term effects that are around every corner. She has issues with hearing. She wears glasses due to her cataracts. She processes information slower than before. I make sure her 504 plan is up to date, but I don’t want her to feel different from everyone else.
I learned that 13,500 children are diagnosed with cancer in the US. That’s enough to fill one classroom of 6th graders every day. A startling fact to consider as school starts. I serve on Connor’s Heroes programs committee because I want to help the parents who are struggling with their child’s cancer diagnosis. When I first met Lisa in clinic, it was a great comfort to me to know that she had been through her own son’s treatment. Now I use my experience as a “cancer mom” to create programs that will benefit (and not burden) a family when they register with Connor’s Heroes.
Emily has been (knock on wood) cancer free for two and half years. We are halfway to her being considered a cancer SURVIVOR! She has to have five consecutive years of clean scans to say that she “officially” survived cancer. But, does anyone really survivor cancer? I feel it is constantly with us. Like another member of our family. Maybe that’s why, when she finally got the dog she always wanted, she named it Nelson. After VCU’s Nelson Clinic where she was treated.
You can help Connor's Heroes make a difference to one family with your $50 gift to Connor's Heroes.
Guest blogger: Lisa Goodwin
September is Childhood Cancer Awareness Month. What better way to learn more about childhood cancer then from the families and volunteers it affects? They will post throughout September, sharing their stories. First up is Lisa Goodwin, mom to Connor, a 13-year-old who was diagnosed with Leukemia when he was only 22-months old. After his treatment, Lisa co-founded Connor's Heroes.
People often ask me why I still immerse myself in the world of childhood cancer, even though my son is considered a cancer survivor. It’s been 12 years since Connor’s diagnosis, and over 9 years since he had his last chemo. Well, I know that Connor’s Heroes is making so many families’ lives more manageable. I love it when I walk in clinic and see several children carrying their Heroes Backpacks. I’ve met so many incredible people that my favorite days are the ones I spend with our hero families. Then, there are the days when the cruelty of cancer is too much. I open up Facebook and read about the struggles of our most amazing boys and girls - cancer coming back with a vengeance, side effects from chemotherapy that are more dangerous and debilitating than the cancer itself, lost days of summer spent in and out of the hospital, flying around the country hoping for better options. The list goes on and on. It’s on those days when I have to dig deep and pray for strength; the same strength I used to get through Connor’s treatment. Yes, the world of childhood cancer rips my heart into shreds. It also shows me a world full of people who want to help. I started Connor’s Heroes so our local families dealing with their son or daughter’s cancer can feel the power of a community around them. People, known and unknown, who reach out to pray, to offer tangible support, and to remind our families that we are all in this journey of life together.
Because of childhood cancer, I know of a world full of incredible moms and dads who are inspired by their heroic children. I met one of my best friends when Connor went through treatment with her son, Owen – sometimes sharing hospital rooms. Cancer bonded us together in a way we couldn’t have ever expected or imagined. Even after Owen became an angel, our friendship grew stronger. Our story is not unique. I've met so many moms who have forged deep friendships with other cancer moms because we've been there and we get it. No one else quite understands.
As I look around at some of our families who are truly fighting to stay strong in this world with cancer – some for the second or third time – I am inspired to keep working to make sure that they do not feel alone and that Connor’s Heroes surrounds them with a community of support. I will continue to push for increased funding for focused pediatric cancer research to happen in Richmond right now. I will cry with my friends as they endure the world of childhood cancer. I will shout for joy as they say goodbye to cancer, hopefully forever. Cancer will never leave my world. That’s okay. I am incredibly grateful to our "community of heroes" who continue to be there to help us provide hope, guidance, and support to over 100 families each year.
Why not join me in building a world full of heroes? September is Childhood Cancer Awareness Month, which is the perfect time to sign up to volunteer. Join our world.
Do you know about C4??
Over the summer, Connor's Heroes hosted the quarterly meeting of the childhood cancer advocacy group, C4. C4 stands for Childhood Cancer Community Consortium. Lisa and Robyn, the pediatric oncology social worker, founded C4 in 2007. Several of the nonprofits who are focused on childhood cancer join together in our need to make sure every family who has a child diagnosed with cancer receives the appropriate help. It’s been a big success. Parents mostly appreciate the manual they can download from the C4 website. It is a directory of services and full of advice to help them start navigating the ups and downs of their journey with childhood cancer. Discover C4 by visiting their website and learning more about Connor’s Heroes and the other members.
Remembering Jazmyn
Jazmyn was supposed to be one of our special guests at this year's Heroes Art Ball. Here is a photo of her having fun at one of our Hero Art Sessions. A few weeks later she began a clinical trial in Michigan. It was her chance to slow the growth of the tumor in her brain stem. Sadly, she became an angel several weeks later. She was an only child. We haven’t forgotten Jazmyn. Erin visited her mom and brought her a beautiful basket. Our parents tell us they appreciate Connor’s Heroes helping them through this awful time. To help others, Connor's Heroes has a fund specifically for families after their loss. It's appropriately called The Heroes Angel Fund. You can give to The Angel Fund simply by donating at our secure site and putting ANGEL FUND in the note. Today, let's keep Jazmyn's family in your prayers.
D’Marco Delivers Inspiring Speech
If you are ages 18 - 44, or have children and friends who are, you could be the bone marrow match that saves D'Marco's life. After delivering his salutatorian speech to his classmates at Henrico's Hermitage High, D'Marco was admitted into the Bone Marrow Transplant Unit. His plans to attend Temple are now on hold. The bone marrow registry, Be The Match, is desperately searching for a match for D'Marco. Once a match is found, D'Marco has a chance for the future he talked about so eloquently in his speech. Why not join the bone marrow registry? For D'Marco and thousands of others with blood illnesses, you could be the match who saves a life.
Register at www.bethematch.org
Watch D'Marco's Graduation Speech
September is Childhood Cancer Awareness Month
Every week in September, Connor's Heroes has an opportunity for you to show you care about the hundreds of families who are facing the ups and downs of childhood cancer. Click on each image to see which event is for you!
Thank You: Shady Acres Swim Team
I love it when kids help our hero kids. I know when Connor was in treatment, he got tremendous joy when his friends visited him. He loved doing the same when one of his buddies was back in the hospital. This group from Shady Acres Swim Team wanted to help children their ages who are battling cancer. So they had a swim-a-thon. They raised enough money for Erin to give gift cards for groceries to the families she will see in clinic this week. If you have a group of kids who want to help other kids, talk with Erin at our office. (804) 897-1272 or email erin@connorsheroes.org. She'll be glad to tell you of simple ways you can raise money for Connor's Heroes. You will make a difference in the lives of children battling cancer.