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!
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.
