“The Day in the Life of Pediatric Cancer”

How many times have you heard or seen something that makes you uncomfortable but you just tried to pretend that it didn’t exist?

I, for one, am guilty of this. I tried to pretend the things I was reading on my friend’s Facebook page about what her and her family were going through weren’t real. I couldn’t believe it. I didn’t want to believe it. Today, I’m asking you to go through their story and put yourself in the shoes of this family. I’m asking you to do this so you can help prevent other families from going through something this hard.

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Here is the story of Avery “brAvery” Heino:

Avery was born on July 1, 2012. She was born normally and healthy. She was perfect. From the moment she entered into the world, she looked just like her daddy, her favorite place was in her momma’s arms and she was adored by her older sister Ella. Those things remained constant as she grew older.

Her parents noticed slight delays in her gross motor skills, speech skills and some fine motor skills around 9 months. Avery’s mother, Dana, works with children and adults with Developmental Disabilities on a state funded Medicaid program so she’s familiar with signs and symptoms of developmental delays. These concerns were brought up at Avery’s 6 month, 9 month and 12 month Well Baby checkup appointments with Avery’s (now former) pediatrician. They were dismissed and brushed off after repeated attempts by Dana to be taken seriously. By 15 months, Avery still wasn’t walking or talking so Avery’s pediatrician finally agreed that perhaps a specialist should be seen.

Her family started working with a developmental pediatrician, who diagnosed her as having mild Cerebal Palsy due to her global gross motor and speech delays. Avery started working with Prince William County’s Early Intervention program and over the next 6 months made great progress. She learned to walk, she learned sign language, she started trying to talk, she was beginning to use utensils, she playing appropriately for her age and with her toys. It was incredible to see how much progress she was making in such a short amount of time. Her parents knew that she may always have some delays but it seemed like she would certainly have a very typical life.

Around the end of May, Avery started exhibiting weird behaviors. She would occasionally tilt her head to one side or pull on her ear. Then she would stop and continue on with what she was doing. She also started losing her balance more and falling down more frequently. Avery was INCREDIBLY strong willed and independent. She would insist on doing things alone and did not want help from anyone, even when most of the time she needed help due to her delays with certain skills. Since she was falling down more and more though, she began to ask for help with walking or would want to hold hands more. This behavior was more unusual for her than before. Dana noted these things and was going to bring them up to her doctor in a future appointment at her upcoming 2 year well checkup or if they got worse.

On June 3, 2014, Avery went to her first doctor’s appointment of what would end up being 8 different medical appointments before she ended up hospitalized from what would be a brain tumor. She started off with what her parent’s thought was a nasty cold. She had a bad cough, a lot of upper chest congestion, wheezing and stridor breathing (a very high pitch breathing sound caused by a blockage in the throat) but no other symptoms. Dana took Avery to a Patient First clinic that night because her breathing sounded awful and she couldn’t sleep at all. Patient First ran a series of chest x-rays, said she didn’t have pneumonia, said it was a bad virus and sent her home. Dana had brought up the weird behaviors with her head (head tilting and pulling on her ear) thinking maybe she was getting an ear infection but her ears looked good. Over the course of the next 4 weeks, Avery’s “virus” worsened. Her breathing symptoms got worse. Dana took her to her pediatrician twice, back to Patient First again, to the ENT to ensure her ears weren’t infected and the tubes in her ears were ok, and to the hospital for a set of throat/chest x-rays to make sure she didn’t swallow something or have an obstruction of some kind. Every doctor Avery saw just kept saying she had a bad virus and that she would get better. Dana kept fighting with them and insisting that something was going on with her head or ears because she wouldn’t stop with the behaviors and her balance was worsening. She had gone from walking completely independently to wanting to hold hands to cruising on furniture and finally sometimes she would even crawl again. She was also covered in bruises because she kept falling down so much.

Finally, on June 22, 2014 Avery started vomiting. The day before she had been at a joint birthday party for both Ella and Avery. Avery had missed the whole thing because she was so sick and slept through it. The last real food Avery ate was birthday cake from her birthday party on the 21st. By the 23rd, Avery was so lethargic and dehydrated she couldn’t even sit up. Mike and Dana took her to Prince William Hospital’s (now Novant Heath System) Emergency Department. They ran a series of tests, x rays, blood work, gave her fluid and medications. They said she tested positive for a virus called RSV – Respiratory Syncytial Virus – which is a virus that is most often found in young infants and children and can be very serious. It’s most common during winter months and cold/flu season – not the summer time. The hospital gave the family nausea medicines and nebulizer treatments and sent them home.

Avery continued to vomit and woke up with no wet diapers. After a call to her pediatrician, they recommended she go back to the Emergency Department. Her parents and grandparents took her back. Prince William Hospital ED staff did a lot of the same things and wanted to send Avery home again that evening of the 23rd. Dana refused to leave. She was very angry and frustrated and insisted that something serious was wrong with her daughter. She wasn’t just going to keep bringing her home and then bringing her back in the morning for fluids. After a lengthy argument with the one pediatrician on staff, it was decided that Avery would be admitted to the hospital.

Avery received bags and bags of IV fluids, multiple anti-nausea and anti-vomiting medications, nebulizer breathing treatments and multiple medications to relieve constipation. She continued to vomit profusely. She would only lay in the crib on her belly with her head turned on her left side. She couldn’t even be rolled over for diaper changes without vomiting. The nurses were putting her diapers on backwards so they wouldn’t have to roll her over. She was vomiting bile. It was awful. The hospital staff still insisted that her issue was having a bad case of RSV and constipation. Every day Dana and Mike asked if they needed to go to a different hospital but were told she was being treated fine at Prince William.

Some things you should know – and granted, things could have very well changed since their time there in June 2014…hopefully they seriously have. That hospital is not equipped to handle inpatient pediatric cases. Their policy should be to triage and transport but unfortunately it isn’t. They had one pediatrician on staff for the entire hospital at a time. That’s the Emergency Department, all new babies born without their own pediatrician to see them and any inpatient pediatric patients. Avery wasn’t seen for “rounds” until the evening when the daytime pediatrician would be leaving for the day. Any questions or concerns her parents had weren’t answered until late in the day because the doctor was stuck in the ED all day with emergencies. The inpatient pediatrics rooms are literally 3 doors down from the post-partum rooms of the hospital – Avery’s room was literally down the hall from where she was born. For a child with a supposed case of RSV who is in isolation and staff has to where gowns to enter the room, it seems like a serious infection risk to put them just a few doors down from new moms and newborn babies. Dana and Mike voiced their serious concerns about Avery’s worsening health issues and the fact that their diagnoses did not seem appropriate multiple times a day. They were grossly ignored. They repeatedly asked for head imaging. In fact, the doctor on staff each day wanted to discharge Avery DAILY for 5 days – even though her condition was not improving but worsening.

Finally on the evening of June 27, 2014, Dana became furious with staff trying to discharge Avery. She refused to leave and demanded they either transfer Avery to a bigger children’s hospital or call security and physically and forcefully remove both she and Avery off hospital property. The doctor came in to help calm things down and decided to try one more thing. Dana said she had till the morning to figure out was wrong with Avery or begin working on transfer orders. The next morning, June 28, 2014, Dana was sitting with Avery and talking to her. That’s when she noticed that Avery’s eyes started moving back and forth rapidly, a condition called nystagmus. After calling the nurse in, Dana demanded a cat scan done. The nurse said it could be a side effect of a medication or part of Avery’s cerebral palsy diagnosis. Dana insisted both things were completely wrong – Avery hadn’t had any medications for over 15 hours and she didn’t have any neurological symptoms relating to her CP diagnosis. She wanted a CT scan done and she wanted it done now. It was finally ordered. Mike went down with Avery to the scan and Dana waited in the room. Before they even returned, Dana noticed the doctor was in the hall at the nurse’s station making multiple phone calls. She looked a bit frantic and panicked. When Mike and Avery came back, the doctor was right behind them. She said, “I have the results of Avery’s CT scan already. There’s a mass in Avery’s brain. We’re transferring her to Inova Fairfax Hospital’s PICU immediately. As soon as possible. I’m making arrangements now. I’m so sorry. That’s all I know.”

June 28, 2014. That day changed the Heino family’s life forever. Avery was transported by ambulance to Inova Fairfax Hospital. When everyone got there, it was like a movie. There were teams of people everywhere. They immediately hooked Avery up to an IV drip of morphine. Dana asked if they thought she was in pain and the PICU doctor, Dr. Davenport, replied, “Absolutely. She’s probably in an intense amount of pain.” Dana and Mike met the teams of people that would be working with Avery. Dr. Leon Moores would be Avery’s lead neurosurgeon. He would go on to complete 8 brain surgeries on Avery and save her life several times. He also really bonded with her and they developed a very special relationship. Dr. Jeff Knipstein would be her lead oncologist because his specialty is pediatric neuro-oncology. It would turn out that Dr. Knipstein had specialized in AT/RT during his fellowship, even though it’s such a rare cancer. Both men would prove to be such an invaluable member of Avery’s team and Dana feels in the bottom of her heart that Avery wouldn’t have made it as far as she did or have progressed as much as she did without either one of them.

It was determined that Avery would have a full brain and spine MRI on that Monday, June 30, 2014 that would last about 4 hours. She’d be fully sedated for the procedure. Then Mike and Dana were told she would have brain surgery on July 1, 2014 – her second birthday – that would last anywhere from 14 to 18 hours. At first, they were concerned about them doing the surgery without even knowing what they were dealing with and thought maybe they should wait until the results were complete from the MRI before scheduling anything. Dr. Moores grabbed Dana’s hand and said “I know you’re scared but you have to trust me. Do you see your daughter over there? Right now, she’s dying. The mass in her head will kill her if we don’t take it out. It doesn’t matter what it is. It has to come out.” Obviously that solidified the plans for surgery. After the MRI, the mass showed to be solid and about the size of a lime. It had also metastasized to her lower spine, L4-L5, with a small spot.

Avery was in surgery for 16 and half hours. The tumor was about the size of a lime but they were only able to get about a third of it because it was so stuck to so many important nerves. All of the wheezing and breathing issues that she had been exhibiting earlier in the month were because the tumor had paralyzed one of her vocal cords and she was aspirating secretions. She ended up needing a tracheostomy. Due to needing the trach, she required a gastrostomy tube (G-Tube) for feeding. The loss of balance, head tilt, ear pulling and eventually not wanting to lift her head up at all was because of the extreme pressure and fluid buildup the presence of the tumor was causing. The tumor eventually caused permanent damage to the way that her spinal fluid flowed through the fourth ventricle of her brain so Avery required several different surgeries for shunts in her brain to assist in draining the fluid properly. She had a medi-port placed under the skin in her chest as an access point for giving her IV chemo or drawing blood and she had a port put in her head to be able to give her chemo directly into her spinal fluid. After her first brain surgery, she was in the PICU for 65 days and on the HEM/ONC (hematology/oncology) unit for another 11 days before she got to go home for the first time. During her entire 10 month course of treatment, the longest she was ever home at one time was about 10 days.

During Avery’s initial brain surgery, a biopsy was taken of the tumor and sent to pathology for diagnosis. AT/RT is very rare, highly malignant, aggressive, fast-growing tumor. Based on the size of Avery’s tumor and the fact that it had already metastasized to her lower spine when we found it, her doctors estimate that it started growing about 6-7 weeks before diagnosis. AT/RT has historically low prognosis rates – typically the younger the child, the lower your survival rate. Children under age 3 usually have a prognosis rate of under 10%. There are generally fewer than 50 cases a year of AT/RT diagnosed in the United States. There’s also a genetic component to AT/RT – most cases of AT/RT occur because there is a deletion on Chromosome 22 of the SMARCB1 gene. Avery was missing this gene, too. However, during extensive genetic testing, it was discovered that Avery was missing this gene because she had a mutation of her 22nd chromosome called Ring 22 Chromosome where her chromosome is in a ring shape instead of the normal shape. Also, due to her ring shaped 22nd chromosome, Avery had another chromosomal deletion. Avery was misdiagnosed with Cerebral Palsy. She actually had a genetic disorder called Phelan-McDermid Syndrome that has similar symptoms as CP and without genetic testing can present as CP and/or Autism. Neither Ring 22 or Phelan-McDermid Syndrome had any effect on Avery’s cancer diagnosis but they were things that would need addressing later in life.

Since Avery has been diagnosed, I had made a point to write Dana to check in to see if she ever needed anything. Dana is extremely strong and has been the most inspiring mother I have ever met. Dana has learned every piece of medical equipment in her house for Avery. She knew exactly what Avery needed at every moment. It was truly awe-inspiring to see. So, as you can imagine, Dana had everything covered. On February 25, 2015, I reached out to Dana to see if she needed anything and to make sure she was okay.

“Me: Hey Girlie! I am checking in on you. How are you doing? Need anything? Don’t be afraid to ask!

Dana: Hey! Thanks for checking on me. I really appreciate it. I’m ok. Hanging in there. Actually – do you work tomorrow? I know you don’t always 5 days a week. Avery has a clinic apt. in Falls Church at 930. I have to have to someone drive us in case she needs help with her trach. I’d need to leave around 8-815a. Her apt. shouldn’t be more than 30-40 min. If you can’t, no worries! I don’t have a nurse tomorrow so I’m just looking for someone to ride with me.

Me: Hey! Yes I can tomorrow! I can be at your house at 8am.”

Once I arrived on Friday the reality of what my friend had been taking on hit me. We got in the car and we headed off to Avery’s appointment. I am listening to Dana update me on what she has really been going through for the last 9 months. We get to the appointment and I’m hearing a lot of things that honestly I don’t really understand, but as I sit there I’m watching Dana rattle off medical terms as if she has been practicing medicine for years. As I look over, I am watching Avery tear up tissues and throw them around to entertain herself during the appointment. It all really hit me in that moment. No one can truly understand pediatric cancer until they’ve spent a day with families fighting it.

We finish the appointment and head back home. While I am listening, I am learning. The chemotherapy protocol Avery is on is for Atypical Teratoid Rhabdoid Tumors (AT/RT), a type of brain and spine tumor. Some of the chemo drugs Avery receives on this protocol are the same chemo drugs that children with Leukemia and other cancers could be on. They only have 10 chemo drugs available for childhood cancers. You read that right… only 10… and most were developed 30, 40, 50 plus years ago.

As I listen to Dana talk about pediatric cancer, I get more and more frustrated. The National Cancer Institute only allocates less than 4% of it’s funding to pediatric cancer research. This isn’t just governmental funds. This is money from tax payers. My heart breaks more and more. That’s when my mind begins to start turning, “How can I help?”

Days after the appointment, I am still stuck on how much information I learned from Dana. I kept thinking about the image of this beautiful 2 year old playing with tissues, while her doctors and Mom discuss her next steps. My heart hurts and I realize in that moment, images make you really feel something. Images help you see the reality. Dana shares plenty of photos of Avery on Facebook and Instagram but she obviously doesn’t share everything. In fact, she leaves so much out. People need to see this. I need to do a photography series on this. I decided I needed to reach out to Dana.

“Me: Hey! So I was really thinking about the visit I had with you recently. It’s been something on my mind for the last couple of days. More importantly how there are no children cancer funds that are developing further. I had an idea and I want your input on it. What about me following you around for a photo series called “The day in the life of Pediatric Cancer”? The basis would be you live your normal day to day and I am quietly in the background documenting it. Once the photo log of the day is complete, we post a series online about how difficult it is and how hard this cancer is on Avery. At the end of it we urge people to go and donation to the cancer program of your choice in Avery’s name. It will bring attention to Avery’s story, while making people see how much of a change it is.

Dana: Honestly I think that would be great. The most impact would probably be when we’re in the hospital and she’s going through treatment bc that’s the hardest time. Or you could do photos of home and hospital. I’m fine with both. I would really also just love pictures of us in our everyday life. That would be awesome. Thank you”

This was the beginning. We decided I would do a 12 –hour day at the hospital while Avery is getting her high-dose round of chemotherapy before her stem cell transplant. This would actually show others what it truly looks like to live in the world of pediatric cancer. We set the date – March 18th, 2015.

As I arrive to the hospital, I’m truthfully nervous. I want more than anything for this to be a learning experience for others. I want more than anything to do right by Avery. I arrive to the room around 7:45am. Dana and Avery were sleeping. I didn’t want to wake them up, so I decided to step outside. About 15 minutes later I get a text from Dana that they’re awake and I head in. You would never know Avery is going through chemo. She was smiley, happy, and completely relaxed.

 

Morning – Avery wakes up and is ready for her day. She has some play time and gives me some beautiful smiles. Avery is on continuous G-Tube feedings that run 24 hours a day.

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Avery morning Mom Avery Morning B&W

Next up – Physical Therapy – This helps Avery regain mobility and get back her strength. Avery and her therapist, Miss LaToya, worked on side sit into transition, which will help with eventual crawling, bearing weight on her legs and standing. Avery wasn’t really thrilled about this part of therapy today because she’s had a rough few days of chemo already. She was, however, more than happy to ride her pink car.

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Physical Therapist – Miss Latoya

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Rounds were next – Avery has many doctors who specialize in her care. There are 9 oncologists in the practice. Each doctor is at the hospital for a full week at a time. Also, there is either a Nurse Practitioner or a Physician’s Assistant at the hospital and several residents training in their oncology rotation for several weeks. During their rounds, they check Avery’s trach area, her g-tube area, and her diaper area for any infection. They go over anything new with Dana and cover any questions she has. Avery wasn’t really happy to get off her pink car for her exam.

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Dr. Carly Varela

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Avery was pretty upset after her exam. Momma, though, has the magic power of comforting her and calming her down. Avery immediately was completely content again after some love from her mom. She was right back to her smiley self. Again, reminding us how incredibly strong and loving this 2 year old baby girl is.

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No seriously – She was ALL smiles.

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Bath Time – Avery was on a very strict schedule for her chemo treatments. This particular round is especially brutal because it is more involved than any of the others. She was receiving 3 chemo drugs this round. All of them were much higher doses than normal and one of them – Thiotepa – is hardly ever given because it’s extremely harsh. Avery was getting a dose that was of one of the highest doses the unit had ever given. One of the drugs actually secretes through your skin so Avery will need a bath every 4 hours for 4 days straight. She’ll need trach care, G-tube care, new clothes, new bedding and Dana will have to change her clothes too. If these things aren’t done properly, Avery can get a chemical burn on her skin from the chemo drug. She also needed to have a diaper change every 2 hours and her vitals taken on the opposite 2 hours. This meant she had to be woken up in her sleep and she also had to be cleaned thoroughly to help rid any potential infections. To give you an idea, baths took around 30 to 45 minutes. This wasn’t an easy process for an adult; now imagine it for a child.

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Nurse – Victoria

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Prayers – Following all of this was exhausting and it was time to relax. One of the hospital’s chaplains, Mary Alice, stopped by to pray with Avery and Dana. It was beautiful and helped get Avery relaxed and ready to sleep.

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Fairfax Hospital Chaplain – Mary Alice

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Bath Time 2 – After a short nap, it was time for a diaper change and another bath. Remember, every 4 hours for a bath and every 2 hours for a diaper change. Given the time it takes to give the bath, it’s basically time for a diaper change following. It’s really a never-ending cycle.

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Pet Therapy – Avery did have something to look forward to after her bath. A therapy dog named “Smudge” came to visit her. On the oncology unit, therapy dogs are used to help children relax and to comfort them during their battle. Unfortunately, Avery doesn’t get to see therapy dogs very often because you can’t be in isolation or have lab results pending. These are things are almost always going on with Avery so she often misses out on seeing the dogs. However, today Avery got to spend some time with a 2.5lb Chihuahua. He was very nervous and Avery wasn’t really sure what to think of him. At home, Avery has a 60lb Labrador named Mikko that she loves so to her dogs are usually pretty big! Smudge was extremely tiny. It was cute to watch her expression.

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Therapy Dog – Smudge

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Therapy Dog - Smudge

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Chemo Preparation – After the visit from Smudge, it was time to start Avery’s chemo for the day. Unfortunately, her port was not responding properly and her nurse Victoria needed to re-access it so she could draw blood from it. Victoria tried a couple other ways to get it draw back but unfortunately they didn’t work and she ended up needing to be re-accessed. This isn’t terribly uncommon – it doesn’t mean something is wrong with the port, thankfully. It just means there’s a problem with the IV lines or the way the IV needle is put in there. It’s still not a fun process, especially when you’re already having a rough day!

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Ronald McDonald House – After Avery’s port was accessed and she was calmed down, Dana laid Avery down to sleep. She needed to unpack at the Ronald McDonald house and she wanted me to see the place she has been calling home on and off for quite a few months. (This organization is truly incredible and I encourage everyone to look into donating when you are in line at McDonalds. Those donation boxes do go somewhere. You can also donate items to the house or volunteer there if you’d like! Go to www.rmhcdc.org for more information.) During this time, Dana opened up to me about what this experience has been like for her personally. She told me about her fears and explained how hard this has been on her family to spend such large amounts of time in the hospital split apart. Dana said something to me that was very profound. I told her I thought she was incredible and I don’t think I could have handled everything like she was. She responded, “You do what you have to for you family. I didn’t think I had a choice. She is my daughter and I will do whatever I need to for her. Avery is the brave one.”

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Bath Time 3 & Family – Once we returned, Avery had already had her third bath of the day since I had been there. She was also on her second chemotherapy of the day. Dana’s mom and stepdad had arrived and Avery was very happy to see everyone. She was all smiles for pictures and was trying on new beaded trach necklaces.

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Evening – The end of the day routine was to FaceTime with Avery’s dad, Mike, and her big sister, Ella. The four of them do this every night as a way to see each other when they’re apart. Mike works to support the family and Ella goes to daycare to stay in her routine. So their family life dynamic is this way during chemo treatments and all hospitalizations – Dana is with Avery at the hospital and Mike is with Ella at home. Mike and Ella come up to the hospital to visit one night during the week and every weekend. They’ll stay with Dane at the Ronald McDonald House. This was the time of day that Avery brightens up the most. She lit up every time Ella or Mike was on the phone. Dana told me that no matter how bad she feels, she’ll always get excited to FaceTime with her daddy and Ella. Her face made everyone around her smile. It was truly beautiful.

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Those 12 hours changed me. I learned more about cancer that day than I had ever learned before. When I started this project I had a goal to educate and to bring awareness to the leading cause of death in children – pediatric cancer. I wanted to help my friend’s story reach people, inspire people and to encourage others to help. I want to do that now more than ever.

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Avery Kathryn Heino passed away on April 7, 2015. She died, not from cancer but from the chemo drugs they use to fight cancer. Those drugs left her with many infections and caused multiple complications that caused her lungs to fail. She ended up on life support and it was unknown if she would ever get better. I know that more than anything I was in denial when I found out Avery had passed away. I was so angry and confused. I was truly lost and frustrated. My heart bleeds for Dana, Mike and Ella. Why? Why is this happening? Why is there no cure? Why is there little to no research on childhood cancer? Why aren’t there any answers? WHY?

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Godmother – Maureen Linke

Avery’s godmother, Maureen Linke, spoke at Avery’s Memorial Service. In her Word of Remembrance, she said, “Aside from watching Avery’s suffering the last ten months, one of the most difficult aspects has been enduring this feeling of helplessness and anger towards our nation’s failure to properly treat children with disease like AT/RT and other pediatric cancers. I will never utter the words “lost her battle with cancer” in relation to Avery. That puts the onus on her, as if, had she only fought a little harder, this may not have happened. The onus is not on her, but on us as a society for not giving her what she needed to win her fight. We don’t do enough for our children with cancer. Less than 4% of all federal funding is dedicated to researching cures for children’s cancer. That is absurd and something not one of us should stand for.”

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Neurologist – Dr. Moores

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I am asking you to think about your family and the children in your life. I am asking you to put yourself in the Heino family’s shoes. Help us make a change. Help us.

 

The Heino family has picked two charities that they would like us to support.

 

I know the first one. I am registered as a renegade now myself.

 

  1. Stillbrave

Stillbrave is local to the Northern Virginia area and the Executive Director/President Tom “Tattoo Tom” Mitchell has experienced the loss of his daughter Shayla from pediatric cancer. Please watch here to see Tom’s story and learn about the Stillbrave Organization.

 

  1. Dana Farber Cancer Institute: Please select from “Area of Greatest Need” drop down menu > “Neurological Cancers” > “Brain Tumor Fund – Pediatric”

 

Dana Farber Cancer Institute is a great organization. It specializes in research for the exact cancer that Avery had. They have treatment plans and specialize in care for this exact cancer. Click here for more information.

 

Lastly, if you feel compelled to do so, there is a fundraiser site for the Heino family. The donations raised will help the family with memorial expenses, medical expenses, etc. The fundraiser site can be found here.

Please feel free to share this photo series and pass it on to your friends. Let’s bring awareness! Let’s make a change!

 

I want to write a thank you to the Heino family for allowing me to be a part of this experience and for allowing me to take pictures of a very difficult time in their lives. Dana and Mike have shown me the type parent I hope to be one day. They have inspired so many alongside of Avery. I am truly grateful. Thank you.

I also want to thank INOVA Fairfax Children’s Hospital for allowing me to document Avery. All the doctors, nurses and staff were all willing to let me take pictures of the care they were giving. They all were truly incredible. You all treated Avery like she was your own and were always on top of her needs.

Finally, to Avery – I can’t thank you enough for the smiles, love and happiness you shared with me. I wish more than anything that society comes together for you. I promise to help and push as much as I can to bring awareness in honor of you. For #brAvery

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105 Responses to ““The Day in the Life of Pediatric Cancer””

  1. Nancy Estrada

    absolutely breathtaking.

    Reply
  2. Ashley McElwain

    This is beautiful and heartbreaking, I didn’t ever meet little Avery, but I feel her personality and bravery through this. Brittani and everyone in the Heino family are Still Brave.

    Reply
  3. Staci Glaze

    Thank you for sharing Avery’s journey. Sending love and prayers to the Heino family.

    Reply
  4. Sheri Roach

    shame on the Dr.’s who kept pushing her away and God bless the Momma who knew her baby and knew they were not right.

    Reply
    • Brittani Gattis

      Yes, Dana is such an inspiration. She really was a truly powerful advocate for her child, and I hope to be like her one day. Thank you for your comment.

      Reply
  5. Margy Jost

    Your article is amazing. So completely accurate in all things a Pediarric Cancer patient and their family experience daily. I hope your article will circulate widely and spread awareness of , that so much more needs to be done. Thank you for posting this. I am so sorry for Avery’s family.

    Reply
  6. Ray Smith

    We lost our grandson to ATRT. We know what you and your little one have been through.
    Hope for the future that a cure will be found and all the cancer money that is collected will be distributed more fairly to children’s research to find that cure.

    Reply
  7. Maureen Phillips

    Thank you so so much for writing this amazing article to educate the public of what our children endure while receiving chemo. If you have tears running down your cheeks from reading this story of someone you do not know, imagine if this was your child. Please educate yourselves on how little is being done for our children fighting for their lives. Tattoo Tom is an amazing childhood cancer advocate. Other great advocates are: Smashing Walnuts, The Truth 365, A day of yellow and gold, Alex Lemonade Stand. St. Baldrick’s Foundation raises money for childhood cancer research, it is their only purpose. Please speak up for our children.

    Reply
  8. Leon Moores

    Beautifully done. Crying again. Miss her.

    Thank you
    Leon

    Reply
    • Brittani Gattis

      Thank you Dr. Moores. The Heino family told me on many occasions how much you meant to them. Thank you for what you do. I wish there were more doctors in the world like yourself.

      Reply
  9. Katherine Shambo

    I learned of Avery and her family from a friend here in Conn. and followed the Facebook progress through her. I want to thank you for illustrating such a beautiful and heartbreaking story of Dana, Avery Ella and Mike. My heart and prayers go out to them. This story I shall be sharing and never forgotten.

    Reply
  10. Renee Payne

    Thank you for trying to make people aware of how important it is to donate to Child hood cancer. I think if everyone went to there local Children’s hospital that they would have to use and spend one day on the cancer floor(8th floor at Childrens in Birmingham) they would leave different people. I know everyone thinks if they donate to cancer they are doing their part (I was one of those ppl) but 4% is not enough. Our children are so strong and fight so hard but in the end there’s no treatments..not enough research. I cried all through this we just lost our baby girl 2 1/2 months ago at 17 months old. Avery reminds me of her and I can’t stop crying. My daughter-in law ( Elyse’s mom) keeps telling me to stop following all these kids on FB but this one really hit home…My heart hurts for this family…it is so unfair..Thank you for trying to make people aware..

    Reply
    • Brittani Gattis

      Renee, you have me sobbing. I am so sorry for your loss. I am glad you follow these kids. It shows you want to make a difference and that means everything. Thank you!

      Reply
      • Renee Payne

        When you have a minute look on Praying for Baby Elyse Reeves page and see how much they look alike….they are playing together in Heaven

  11. Alyssa

    Thank you so very much for writing this post! I can only imagine how difficult it was to write. My brother died from a form of lymphoma at the age of 16 (about 4.5 years ago) and I cannot thank you enough for writing this. For me, it hits so very close to home. But for many others, it’s that missing link to help them understand the pain. Avery’s family is truly incredible. Please let them know that they are not alone in this fight! Thank you again for bringing awareness to pediatric cancer.

    Reply
    • Brittani Gattis

      I’m so sorry for the loss of your brother. I wish chemo drugs were better and we had a cure to cancer to stop losing children. Thank you so much for your comment.

      Reply
  12. Carolyn

    This was really difficult to read but you did an amazing job. I thought I was reading my daughter Kailey’s story..almost identical. I lost her to complications of the chemo drugs as well (treating AT/RT). My heart goes out to all of the families who had/have to deal with pediatric cancer.

    Reply
    • Brittani Gattis

      I am so sorry. I really wish they had more treatment options for AT/RT. It really saddens me. Thank you so much for commenting.

      Reply
  13. Dedie

    What an incredible tribute to Avery and an unbelievable keepsake for her family to cherish. After praying for Avery for many months without ever meeting her in person, I feel like I have a better sense of who she was. Thank you for your gift of capturing these sweet (and painful) moments. You truly put a face on pediatric cancer. What a sweet angel God has in Avery.

    Reply
  14. Kailyn Bear

    Absolutely amazing job putting this all together. Breath taking images they will have forever of their sweet Avery. I know it was terribly hard to immerse yourself in their day and how angry you must have been at the end of it, seeing that sweet girl suffer and know there is more that could be done but isn’t. Thank you for bringing awareness and touching mine and my husbands heart deeply. I plan to contribute to Pediactric Cancer always in the name of Avery and that beautiful smile. #stillbrave #brAvery

    Reply
  15. Kayli

    You did such a beautiful job representing what we pediatric oncology patients go through. I myself am a pediatric cancer fighter and have been fighting for the last 13 years and am currently undergoing palliative chemotherapy for my stage 4 neuroblastoma. My heart breaks for Avery’s family and I hope they know how many lives I’m sure she touched during her short but precious life.

    Reply
  16. LzGiGi

    Took me three tries to actually get through it, but thank you so much Brittani for this beautiful tribute to a beautiful life. I am the mom of the gal in the middle of the “brAvery blue hug” and GiGi to Avery’s friend L. Dana and Mike are awesome and our prayers will continue for them and Ella.

    Reply
  17. Barbara St.Pierre

    As I read your story…I relived what I went through with my 13mo old son.. Gone over an over again to pediatrician saying he had a stomach virus….His head tipped to the side and vommiting was unbearable…They admitted us to a hospital after 6wks of being sick…still saying a virus…until I changed Dr. This dr. sent us to a Boston Hospital…Floating Hospital where dr pinned the nail on the head with what he thought he had…Jared was admitted and had shunt placed and tumor removed….one yr came all bk again …admitted to Boston Hospital on a Friday and passed away on Monday…March 26th 1989..It has been 26 yrs now and the memory of Jared is as fresh as a recent memory….life is so unfair…why does god choose to make babies or anyone suffer with these horrible diseases….take care praying for you….

    Reply
    • Brittani Gattis

      I am so sorry for your loss Barbara. I completely understand how much a parent has to be an advocate for their child after learning so much from the process. We had so far to go to find a cure.

      Reply
  18. noelle

    There is so much love in these photos. Thank you for sharing this beautiful family. I’m sorry they lost such a perfect soul.

    Reply
  19. Nancy E

    Can’t imagine what mom went through and little Avery. Brought tears thinking of her.

    Reply
  20. Judy Via

    Amazing heartfelt article Britney. I read it with tears running down my face, crying again now just writing this post. I also lost my Dad to cancer (Leukemia), but we always felt it was the chemo drugs that killed him. Wearing my “brAvery” blue today, and sending prayers and caring thoughts to the Heino family.

    Reply
  21. Candee Fissell

    What a beautiful tribute Brittani. Very touching story.

    Reply
  22. Melissa

    Thank you for bringing awareness! My daughter was one year cancer free this past Thursday. She will be 4 on June 2nd. We were blessed to keep our baby girl but know many families whose babies are with Jesus. Praying for a cure and more people like you who care and want to make a change!

    Reply
  23. Nikki

    This is beautiful! My heart breaks for this family. I wish there was so much I could do for them. I gave up on my dreams of ever being a nurse. But today after reading this (seriously moments)I enrolled in classes I am going to continue my education as a nurse but my nursing in pediatric oncology! I had been so selfish, wondering how I was going to have time to go to class how I was going to afford it. But this little girls smile and the for the fact she was a baby, she done it all! Her life just changed mine! And thank you Brittani for publishing this artical!!

    Reply
  24. Tracy Nordin

    Brittani,
    Not only are you an awesome photographer, you are an amazing writer. You captured the love, faith, strength and sheer determination that Dana and Mike displayed every day as they fought to save Avery’s life. As if that was not enough, a day never went by that they didn’t tell/show Ella how much they love her. I can only imagine how hard it was to say goodbye to their Avery bug a little more than 9 months after she was diagnosed. But if it wasn’t for their love and don’t f… with us and our daughter, they may have been saying goodbye last summer. Dana and Mike knew their baby and knew something was seriously wrong. Due to Dana’s line of work myself and some others on here have children with disabilities. Others who don’t may be shocked by what you wrote, sadly we in the know have experienced over and over again the ignorance of some doctors, nurses, etc… But we learned how to fight those fights over time. Dana and Mike thankfully never experienced that with Ella. Again it was their love, faith, strength and sheer determination that gave Avery a fighting chance. Brittani through your touching pictures and your heartfelt writing you eloquently told their story. Tracy

    Reply
  25. Jody Glass

    Speechless….what a brave darling

    Reply
  26. Sandy Plemmons

    This is all too real for too many families. There is not enough money for research. Very soon (hopefully by May 15th) there is a song called “Hold Out A Hand” by Edwin McCain that will be available on iTunes- for every download of the song ($1.29) proceeds will go to childhood cancer research. We MUST find better less toxic drugs to treat this horrible FAMILY disease. You can also learn more about what is being done nationally at http://www.CAC2.org (Coalition Against Childhood Cancer) this is a national coalition leveraging congress for more funding dollars. Everyone can do a little to make a big difference – we all need to HOLD OUT A HAND TO END CHILDHOOD CANCER.

    Reply
  27. Elizabeth Vargas

    First of all, so sorry for Averys family.. may God give them the strength they need this moments.
    Your article is amazing.. I am a cancer mom as well.. this made cry.. it brought back so many memories of when my daughter was in high chemo treatments. She is currently in remission thank God.
    I really hope that people understand a little bit more of what families like Averys and like my family have to go through.. it is really hard.. and people don’t really understand unless they see it or go through it. I hope the government do more for our kids.. they have to understand that cancer in kids is not rare.. it’s happening.. right now.. we need to do something to make all this stories have a happy ending..
    Thank you for sharing 🙂

    Reply
  28. Michelle Scott

    This inspired and broke my heart at the same time. My daughter works at a pediatric cancer hospital and I know how hard it is for everyone.

    Reply
  29. Lynne Stiefler

    This photo journey of Avery and her family along with what they had to face in her treatment is profound and absolutely fantastic as an educational point. Childhood cancer is so under funded by the national government and other organizations (American Cancer Society). I am a retired pediatric oncology nurse and founder of a program CURE Bears for Hope and Love that sends bears to children with cancer so the story you told is not something that I was not aware about but appreciate what you have written and shared. My thoughts are with Avery’s family and the loss of a child is the worst loss that a family can experience.

    Reply
  30. Milagros

    I was praying for a miracle at the end of your story, when i reached the end I burst in tears, and was comforted by my 19 mos. twin daughter. My heart breaks for this family and for the suffering Avery has gone thru. I have no words

    Reply
  31. Tasha Greene

    I aspire to make it through the entire article but I cried too hard to get through it. I have followed Avery through Still Brave’s posts and really fell in love with this little angel. I came across this article today, on May 8th, exactly 2 years from the date my then 4 year old daughter Arianna was diagnosed with a malignant brain tumor. Arianna has had multiple brain surgeries, radiation to her entire brain and spine and very high dose Chemo that also almost killed her twice. By the grace of God, my angel is still here though we are fighting complications from the past treatments still, every day. My heart aches for Dana and I can attest to the fact that most moms just know when something is wrong with their child. She is an amazing mother and I pray that she is living with as much peace and joy as possible. Thank you, Brittani, for these beautiful photos. This truly captures the good, bad and ugly of the world of childhood cancer. It can no longer be ignored and I pray that the world starts to take notice and realize that we will no longer sit by watching our babies die.

    Reply
    • Brittani Gattis

      Thank you Tasha. We appreciate your support. I will keep Arianna in my thoughts.

      Reply
    • Julia

      Tasha, you are never alone. I will keep your Arianna in my thoughts. Sending much love. #CureKidsCancer

      Reply
  32. Melissa

    Thank you for sharing your time and talents in this way. More and more people need to see that our kids battling cancer are not “smiling bald kids” but kids in pain, in discomfort, in the hospital having things done to them that they don’t want done – because they are unpleasant to say the least.

    And in the end, it more often than not ends in sorrow for their families. Childhood cancer is not adult cancer. Our babies, kids and teens deserve more than hand-me-down drugs from adult cancer treatments. Awareness of the fact that only two drugs have been approved for use in childhood cancers over the past 30 years is essential to people understanding why we need their support financially to help fight kids cancer.

    Thank you again for your heartfelt work and love for this family.

    Reply
  33. Michele LeBlanc

    Such a beautiful tribute to a beautiful angel. Having suddenly losing my sweet daughter at 13 months, I’ve always known watching your precious child suffer, would be worse. Dana showed such grace, courage, and love, which was captured adoringly in your pictures. I’ll pray for the family and for you, as you all walk the path of extraordinary grief.

    Reply
  34. Angela

    Beautifully written article, I didn’t want to read it because I knew it would be heartbreaking. I am glad I do and will share and hope more people become aware of the severely underfunded pediatric cancer research. 🙁

    Reply
  35. Julia

    It’s so wonderful that you want to spread awareness. THANK YOU. Avery deserved more, but you certainly gave her family a great gift by documenting her smiles so professionally. Keep spreading awareness in her honor! 🙂

    Reply
  36. Sally

    You did an incredible job sharing Avery’s story. Thank for sharing and educating us. A beautiful little girl and family.

    Reply
  37. Debby

    Thank you for this beautiful amazing story of precious Avery. This should be required reading for those who think our kids are only worth 4% of funding. I know that when I followed the story of my first Pediatric Cancer child over five years ago, I was stunned to find out there is so little research and funding for the kids. My outlook changed forever, and I will continue to do whatever I can to make others aware of how things are. Thank you for being a voice for these precious little ones. I will keep Avery’s family in my prayers, and I pray for your good work to continue.

    Reply
  38. Jodi

    With years in my eyes your writing and pictures gripped me from the get go. I feel like I got to know beautiful Avery through your words and photographs. My heart is aching for her family amd although this was a painful piece to read I am smiling through my tears at the smiles you got to experience and capture. YOU are an inspiration and Aveey’s family is lucky to have you as a friend. I will donate and share this in Avery’s memory. Thank you again for introducing us to this native little angel. Absolutely beautiful!

    Reply
  39. Crystal

    What an amazing documentary & I’m sure in time will be cherished memories for Dana. My Dad was a bone marrow donor for a 3 yr old little boy that had a rare juvenile leukemia. Next month that little boy will graduate from high school. More needs to be done to fight childhood cancers. Thank you for your commitment to that fight.

    Reply
  40. Melissa Burns

    I’m not even sure How I found this story, But it is very heart breaking and eye opening. From the doctors not listening to the Mother to the unbelievable low amount of funds for children. I just ask WHY..? Our children are our future. I just sit here and think what can I do to help.? I am a nobody, I do not have lots of money. But I do care.. What can we do to change it.? Thank you for your story. God Bless her family..!

    Reply
    • Brittani Gattis

      Hi Melissa, You aren’t a “nobody”, you are a “somebody”. Write to your local congress representative, donate bone marrow or blood, or find another thing you can easily do. Change doesn’t have to come from something huge, change can come from something very small. Remember that 🙂

      Reply
  41. BethAnn Telford

    Brittani,

    This truly means so much to me personally, as you capture what my mission is with the pediatric world and what I advocate for. What the federal government provides for these children versus the adult cancer world is just humiliating! I hope that we are able to change this in the very near future with our advocating and voices to those that matter! Again, thank you and WE WILL WIN THIS BATTLE FOR THE CHILDREN! – BethAnn Telford

    Reply
  42. Cyndi Hansen mom of ^^Angel^^ Cowboy DaNNY^^^

    Such powerful. Thank you for sharing. More people need to realize the pain that us parents go through when our child is diagnosised with Cancer. Our oldest son was dxd on July 17th 2009 with Refrative Acute Myleoid Leukemia FLT3-ITD mutation gene. He received his bone marrow transplant on Good Friday April 2, 2010, went into congestive heart failure and had a dialysis catheter placed on Easter Sunday. On Friday June 17th 2010 he could not breath and started to cough up blood, they did an upper and lower GI and placed him on a ventalitor, and placed in PICU, we were never able to ween him off the ventaliator, He was awake the entire time he was on the ventilator and able to communicate with us via pictures and writing. He passed away on June 30, 2010 at the age of 6 years 10 months 2 days, not from the cancer, as he was cancer free 100% bone marrow donor. He died from the damage of the chemotherapy and radation, ventilator induced pneumonia and kidney damage along with multi organ failure. IF you have not lived what each family has to live through when their child is dxd with cancer, there is no way to understand. We need more stories like this with pictures for the world to realize that our child when they are dxd with cancer live as normal of a life that they can in the hospital. We were in Sioux Falls SD from July 17th-December 6 (1 day after our youngest son turned 3), then we were moved up to the U of M Amplatz Children’s hospital and Ronald McDonald House to live out the rest of his life. At that time we had no idea that we would never bring DaNNY home. Thank you for sharing this beautiful story, the happy times and the sad times. This is a great memory for Heino family. Thank you. You did a wonderful job

    Reply
  43. Megan

    Hi, beautiful pictures. I have a 2 year old and im crying to imagine what they went thru with pwh then treatment.
    Its time for the gov to stop allowing companies to dictate what horrible chemicles we come in contact day to day in products and then get real with treatment, especially our most precious babies. Rip Avery, prayers to the family and ill be donating next.

    Reply
  44. Rebecca

    my heart breaks for your beautiful little girl. No child should ever die I wish I could take your pain away there needs to be more drugs made for children a child in my class passed away in December from cancer please tell me how I can help and know you are not alone.
    Lots of love, Rebecca

    Reply
  45. Haley

    Thank you so much for sharing this journey with everyone. I was heartbroken and in tears by the end, and my thoughts and prayers go out to the family. I am a current Nursing Student with plans to go into Pediatric Nursing, so seeing these stories remind me and encourage me to work hard so that one day I can hopefully help to make a difference in the lives of pediatric patients such as Avery. Children are so resilient and can bounce back from great illnesses or injuries, which is truly an inspiration. They can have the worst days or be in pain and still smile and light up the room. It’s saddening that there isn’t more support towards research and better treatment options for them as their lives have just begun and deserve just as much, if not more, care and attention as any adult patient! I will continue to spread the message about childhood cancer and I will definitely keep Miss. Avery in my heart. <3

    Again, thank you very much for sharing!

    Reply
  46. Ken Ibarra

    Thank you for sharing this touching and heartwrenching look into Avery’s life and family. I found your site because a dear friend, Patricia Watson, shared it on Facebook. I met Patricia and her husband Jesus through FB as they too, shared their lives with cancer. Baby Juliana had neuroblastoma cancer and died at 33 months. I never met her, but she, like Avery, stole my heart. I support their efforts and I will support yours. I also lead a Relay For Life event in my community, however I almost feel guilty because I know that only a small portion of what we raise is helping childhood cancer. I am also a local elected official and would like to learn more on how I can lobby and fight for these babies. Thank you again… nothing like a grown man sobbing and getting angry at the same time…

    Reply
  47. Thom Kavanagh

    Thank you Brittani for nailing this assignment. What a beautiful, beautiful way to commemorate the brave Avery and highlight the courage that the entire Heino family displayed in the face of this crisis. May God bless them all and everyone who helped them along the way.

    Reply
  48. A Day in the Life photo series | danaheino

    […] A Day in the Life of Pediatric Cancer photo series […]

    Reply
  49. S. Deyo

    This is Just amazing what you have done. I have helped do Fundraisers for total Strangers. It started out of a long distance move and feeling home sick. I sew all kinds of purses Diva Aprons etc. I have met so many amazing people along this journey. This is a great documentary. Good Bless This family . Avery like many have joined The many angels . Lets pray they find a cure . Great Job !! What a wonderful friend … The world needs more people like us to join forces. IT CAN HAPPEN TO ANYONE IN THE BLINK OF AN EYE!!!! PLEASE HELP OUR CHILDREN…..

    Reply
  50. hannah

    Heartbreaking. So very hard to read. My husband fought cancer twice, and that was horrible for both of us. I can’t really imagine seeing a tiny child going through that, this is so unfair. I think it is lovely that you are using your photography talents to bring about change and show people what’s going on. Thank you.

    Reply
  51. Sandrah

    I stumbled onto this through Tattoo Tom’s upcoming fundraiser. Avery is thought of today, and she is still impacting the loves of others. Thank you, Brittani, Dana, Mike and Ella. Also to their new baby, Eva! I’m praying for you today. Sending so much love! #brAvery was such a beautiful little soul. God bless you all!

    Reply
  52. genovapedia

    Nationwide Children’s Hospital is one of the largest pediatric hospitals in the \nnation and operates the second busiest Emergency Department in .

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