endDIPG

Camron Cozzi

/ Kimberly Beauchamp, ND / 1 Comment

Camron_CozziTwo years ago today, on December 22nd, 2015, 15-year-old Camron Cozzi and his family received life-altering news: Camron had an inoperable brainstem tumor called DIPG.

Cam had suffered a concussion during a lacrosse game, and as his parents monitored his symptoms, they noticed he was getting progressively worse: double vision, stumbling, walking into things, and frequent vomiting. When DIPG was identified as the cause shortly thereafter, doctors told the family that the tumor would claim Camron’s life within 2 months if he didn’t get radiation, or in 9-12 months with radiation.

7x5 Flat CardCam is the first child I’ve written about here who I haven’t met in person. We just missed him last summer when we went to Mexico to get to know 11 other DIPG fighters. I got closer in November, when we were 20 feet from each other, separated by the door to his room at Hospital Angeles. My cousin’s daughter, Kira, had been admitted to the same hospital when I ran into Camron’s father, Paul. He asked if I’d like to say hi to Cam. Under the circumstances and knowing that I couldn’t be fully present given what was going on with my family, I declined.

Camron’s been on my mind ever since. His parents have helped me get to know him a little bit better, as I hope this story will help you.

By all counts, Camron’s a typical teenager: he loves candy, sleeping, his dog Jagger, and watching TV. One of his favorite channels is HGTV, which inspired his dream to become a tiny home architect. Coming from Bonney Lake, Washington, Cam’s a hardcore Seahawks fan, and he’s also an avid lacrosse player.

Although he’s not been to school in a while, Camron has always excelled academically. His parents describe him as stubborn, funny, brave, witty, honest, loyal, caring, and a warrior.

He’s also incredibly social. Camron’s mom Cyndi explains, “He used to call me from one friend’s house to ask if he could go to another friend’s house once he had to leave the first friend. I used to get so embarrassed that he did that because I didn’t want him to offend his friends. I also used to worry why he didn’t want to be with us—his family. He has always loved being with friends, and I miss that for him.”

Even though Cam might have wanted to spend most of his free time with peers, the Cozzi’s are close. Cyndi recalls when the doctor first told Cam about his tumor. “He asked calmly if there was a pill to make him die faster because he didn’t want mom and dad to have to go through any of it.”

Despite Cam’s initial reaction to his diagnosis, they opted for radiation, which began right after Christmas and continued until February 9th, 2016. About halfway through his sessions, Cam was ready to fight.

After completing radiation, Camron and his family took a Make-A-Wish cruise, and then headed to Cologne, Germany, where he underwent immunotherapy from April through November of last year.

“Early on you would think Camron was going to win the battle,” Cyndi says, since his first symptoms weren’t too bad, and radiation helped improve his balance. Camron also never had to take steroids to control his symptoms, so he didn’t gain the weight or have other steroid-related side effects that a lot of kids with DIPG do. And even though Cam had to give up playing lacrosse, he was still able to help out coaching younger teams in their town.IMG_5845However, in October of 2016, Cam started to struggle walking and an MRI showed he was in progression. One week before Thanksgiving, he had a shunt installed to help relieve symptoms related to hydrocephalus (fluid buildup in the ventricles due to tumor growth, which increases pressure in the brain). Up until he had the shunt surgery, Cam attended school.

His family contacted Dr. Burzynski in Houston after discovering Cam was in progression, and he received treatment at the clinic from January through May of 2017, when it was determined that he wasn’t responding to it. Throughout this time, Camron’s balance continued to worsen, and he started to use a walker to get around. By May, he had lost the use of his right leg and arm, so he needed a wheelchair for mobility. Around the same time, Cam also lost the ability to speak audibly.

Camron has had to rely on others to help him out with just about everything since last May—showering, dressing, you name it. “Once he started to lose his right side, he began to feel frustrated and mad,” Cyndi explains. “But shortly after, the happy, funny Camron that we knew started to show up again. His demeanor physically changed, reflecting his will to fight this battle.”

After the Burzynski clinic failed to help improve Cam’s condition, the family began researching other treatment options (of which there were few) and settled on Monterrey after talking with Parker Monhollon’s mother, Amanda. Camron was accepted into the program and received his first treatment on June 2nd, 2017. He’s completed all four recommended immunotherapy treatments, which he received alongside IA treatments 2, 3, 4, and 5.

Recently, Cam completed five rounds of cyber knife radiation back home in Washington to treat a secondary tumor in his thalamus. Between this and the Monterrey treatment, the doctors believe that the thalamic tumor will be eradicated. They also believe the Mexico treatment is working against the DIPG.21743419_10214665166768493_3963696692471813899_oFortunately, Camron’s mother works from home as a photographer and graphic artist, enabling her to incorporate Camron’s care into her days. His dad also has some flexibility to work from home, so between them, they can make sure that Cam’s never home alone.

Of course, DIPG affects the whole family. Camron’s older brother Jordan graduated from high school the year Cam was diagnosed, and he’s decided to attend college locally to be near the family and help take care of their home when they travel to Mexico every three weeks for treatment.

When talking about the hardest parts of this journey for Cam, Cyndi says that being a teen and having to spend all of his time with mom and dad must rank at the top. Camron’s also missed out on other important life events like learning to drive a car, and ordinary things like going to school.

“Being that Camron is older, he has experienced more than most DIPG warriors,” Cyndi explains. “As a parent, I mourn what should have been for Camron. It is hard for any of us to see the world keep going and leaving our DIPG children behind on many milestones. However I am joyful to be in the battle. Cam and I pray and give thanks for this journey we are on right now. And we do this through tears and laughter. It is our life, and Camron has never said he wished it any other way.”

IMG_1582We would have wished it another way for you, Cam. But we stand with you now and maintain the faith that you will beat this cancer for good.

On March 10th, 2018–Camron’s 18th birthday–he went to be with the Lord. We will continue to work to fulfill your wish that no more children will die from this disease, Camron.

You can make a memorial donation here:

https://awfdonate.org/wings-of-love/team-cozzi/

Kira Brown-Augdal

/ Kimberly Beauchamp, ND / 4 Comments

mdhm_270617_0001-EditThe first time I met Kira in person, she was visiting Rhode Island with her family—her Mama (my cousin, Jeni) and Pappa (Trond), and Kira’s brothers, August and Jasper.

Kira didn’t greet us with a hello; instead, she pig-snorted her way out of the car, up the driveway, and straight into our hearts.

To say I’ve never known anyone like Kira doesn’t do her justice, nor does it tell you much about her. So here goes.

Kira reminds me a lot of her mother, who so many years ago marched up that same driveway and all the way to the ocean, exclaiming over its magnificence when she eventually realized that giant expanse was water.

Screen Shot 2017-08-12 at 7.03.21 PMShe never let anyone help her cross the street, insisting she could hold her own hand.

She wasn’t really big on us calling her “our Jeni,” but she put up with it because she had to.

She moved all around the world with her brothers and parents, and she grew up to be the most exceptional person I’ve ever known.

While watching a movie recently, Kira asked her Mama to pause it and said, “Shall I tell you what I’m going to name one of my kids?” “Yes, please!” Jeni replied. Kira said, “Jeni.”

When Kira came to visit at four years old, she did pretty much everything on her own. She got herself dressed in the morning, fetched a breakfast of whatever she could find, joined her Mama for some down dogs on the lawn, and climbed her way to the topmost branches of the maple tree in the front yard, only later wondering aloud how to get down. She was fearless.

She cracked up over the term, ear of corn, dangling one from the side of her head, and she turned casually on her heel, walking away as her brother still fumed over a skirmish she’d let go of as soon as it’d happened.

15977103_10210461528726254_3188618977486293296_nShe splashed her way through the fountains in Boston Commons and chatted with strangers on the T, informing them that she used to live in Bolivia and was moving to Ghana next. And she got temporarily separated from us as we exited the station.

When we found her soon after, she sat on her mother’s lap and asked, “How long would have looked for me?” Jeni answered, “Forever, until I found you.”

Wherever she’s ventured, Kira has folded herself into the hearts of everyone she’s met. And while she may quite possibly be the most adorable little girl you’ve ever seen, don’t dare call her little, and definitely not cute. She is FIERCE.

Not long after Kira and family had moved to her father’s native Norway, she started experiencing sudden onset headaches and vomiting. We were visiting my husband’s side of the family in Montana last summer when I got a message from Jeni saying that the doctors thought Kira had a brain tumor. It was terrifying news, made only slightly less so by their reassurance that it might be benign.

But a biopsy told the unimaginable truth: Kira had a very aggressive brain tumor, which they referred to as a diffuse midline high-grade glioma. I wracked by mind to remember what we’d learned about pediatric brain tumors in oncology, which was pitifully little. It wasn’t until some time later that we found out that most doctors lump Kira’s tumor in with DIPG, due to its diffuse nature and primary location in the brainstem. Whatever its name, this tumor had a dire prognosis, with few children surviving one year post diagnosis.

Kira had three brain surgeries to place a shunt to relieve pressure in her head. Then, as in most places, the only “treatment” offered to her was radiation. Since nobody loves Nutella on pancakes like she does, Kira completed her treatments without going under—which meant she could eat beforehand. With the radiation mask bolting her head in place on the table, Kira practiced meditative breathing as Jeni walked her through the procedure over the speaker.

16681567_1231350263613291_6424289874334949377_nShe had a brief “honeymoon period” after radiation, when her grandparents from Norway and Texas came to spend some time with Kira and the family. They picnicked near the fjords, went ice-skating, and made Kira’s favorite meal of sushi together.

But by December 2016, Kira’s tumor was in rapid progression. She lost the ability to move her left side, and by mid-January, she couldn’t speak, swallow, or see, and the doctor said it was only a matter of time before she stopped breathing.

“I remember lying in our bed, having to ask Kira’s brothers to say goodbye to their sister forever, and Trond and I trying to do so ourselves. I remember the crushing, burning, suffocating pain of facing a life without our precious daughter. I remember each night watching to see if each breath might be her last, then feeling grateful each morning to wake up with her still breathing by my side.”

16107427_10210704470421239_6341651544564838374_oThen somehow, in this darkest hour, miraculously, Kira started very gradually regaining some of the functions she’d lost. She began to use her right hand again to form a half heart, made whole by Jeni, to tell her Mama she loved her. Over time, she started speaking a few words, and not long after, Kira was able to sit up and eat a couple bites of food, even joining the family at the table for Easter dinner.

Shocked and unsure of what to do after having sent her home to die, Kira’s doctor conceded that she needed another MRI to figure out what was going on and to help plan for future treatment if Kira continued improving. That scan showed that the original tumor had shrunk, but there were a couple satellite tumors in new areas.

Over the next several weeks, Kira continued making strides that looked a heck of a lot like healing, so Jeni began strategizing how to keep her on that path. She’d heard about Mexico through the DIPG community, and she spoke with Mariana Gutierrez and Dr. Siller directly about what to expect. After reviewing Kira’s MRI and seeing her on Skype, the Monterrey team accepted her into their program.

A follow-up MRI that Jeni had to push hard for ruled out bleeding that would have made it more dangerous for Kira to fly, and then Mama, Pappa, and Kira were en route to Mexico.

Kira received her first IA treatment within days of arriving in Monterrey. Her tumor responded by decreasing significantly in size, and the swelling and cysts she had earlier also started to subside. However, she began having more trouble eating, so she eventually needed a feeding tube to supplement her diet.mdhm_280617_0508-EditI went to Mexico in May when Jeni’s dad, who’d been down there helping them since they arrived, needed to return home to Texas for a few days. Even after my mother and my aunts had told me about their recent visits with Kira and I’d seen her pictures for months, nothing could have prepared me for the child who met me when I arrived.

The best way to describe her was fragile: paper-thin skin wrapped loosely around the bones protruding from under it; the roundness that the steroids lent her face unable to hide the sickness that lay behind it.

Just as astounding was Jeni’s seemingly endless reserve that allowed her to attend to Kira’s every need, which started at dawn and continued round the clock, save for a couple interrupted winks during the wee hours of the night.

Picture this: your child is wheelchair bound and unable to move anything but her right arm and her head. She tells you she’d like to try to use the toilet, instead of going in the pull-up she’s had to wear since her body surrendered the right to hold her urine. So you hoist her out of her chair, her tiny arm the only part that can grip round your neck, and you squat with her like that, suspending her over the toilet for as long as it takes to help her feel like she has the tiniest bit of control over her life.

Getting Kira to swallow a pill could take a half hour of encouragement and demonstrations, as Jeni placed Kira’s hand on her own throat and swallowed to remind her how it feels.

Her head hurt too much to venture outside much, and every noise sounded like thunder, as the tumor had invaded close to her auditory nerve. But sprinkled between the hours of careful positioning, changing of port bandages, and slowly pushing liquid food-filled syringes, we had a chance to get to know each other again and in a different way, each of us in these new roles that no one could have anticipated.

Leaving them a few days later was the most heart-wrenching task of my life, but I promised Kira I’d return soon.

mdhm_010717_4348-EditThe next time, I came with Kira’s cousin, Lily. Though they’d not seen each other in nearly two years, the bond they shared retied itself as they fell back into their easy, comfortable closeness. Kira brushed Lily’s hair, told her she loved her (something normally reserved for Mama and Pappa), and pulled her close to whisper in her ear to please stop blowing kisses. “I don’t like kisses at all.”

mdhm_010717_4234-EditKira’s now had five IA treatments. With each one, she gains a little more functioning. She can move her left arm and pull herself up to standing with assistance, her speech is becoming clearer and stronger, and her once broad vocabulary is returning.

As I look into those huge liquid brown eyes so filled with joy at just being alive, I can so clearly see Kira years from now, walking next to her daughter, who’s holding her own hand as she crosses the street.15940602_10154951031339973_4978561726034908217_n

On November 15th, 2017, Kira passed away from complications of DIPG. We love you totally, infinity much, sweet, perfect girl.

Follow Kira on Facebook:

https://www.facebook.com/groups/kirafierce/

To make a memorial donation:

http://minaksjon.barnekreftforeningen.no/forskning/5-5378

 

 

Ronil Mehta

/ Kimberly Beauchamp, ND / 7 Comments

 

mdhm_280617_0962-EditRonil’s story is one of the hardest for me to write, maybe because I so clearly remember being 13, but more likely because of how he lives his life—with devastating beauty.

His father wheeled him into the living room where we could all meet and chat. His 9-year-old brother Sahil sat at his side, catching the drool that escaped the corner of Ronnie’s mouth. Despite his almost complete inability to move, Ronnie was entirely present—focused on the conversation, indicating in subtle ways that only his family could understand if he needed anything, and cracking up when something struck him as funny. mdhm_280617_1000-EditIn January of 2016, Ronnie felt dizzy and collapsed unconscious on the floor while getting ready for school. An MRI showed he’d suffered two strokes due to a tumor in his brainstem. He fell into a coma, which he wasn’t expected to come out of. The doctors encouraged his parents Manisha and Milan to take Ronil off of life support, but they fought them, saying, “He will wake up.”

Each day, the neurosurgery team came in, putting a catheter down Ronil’s throat to test for a gag reflex and touching his cornea to see if he’d respond. One week later, Ronnie did wake up, blinking to communicate that he understood what was happening and later explaining to the doctors that he’d felt everything they’d done to him, even as he was powerless to stop them.

Ronnie had surgeries for a G-tube (for nutrition) and a tracheostomy  (for breathing support), and he had a port placed in his chest wall (for infusions). He underwent 33 sessions of radiation at Oakland Kaiser in February of 2016, after which he slowly started talking again. By April of the same year, he had about 80-90% of the function back on his right side.

The family adds that Ronnie has always been selfless and loving, putting others before himself. At a time when he was unable to speak, he pointed at a few letters to ask his parents, “Are you all doing OK?”

Throughout his three-month hospital stay, the doctors advised Manisha and Milan to tell Ronnie about his condition, citing studies showing that kids fight harder when they know they have cancer. But his parents needed to tell Ronnie in their own time, in their own way. He was clearly capable of understanding the situation; it was up to them to bring it to Ronnie in a way that he could deal with.

Once back in the comfortable atmosphere of their home and when he was able to hold a conversation, Manisha and Milan explained to Ronnie that a rare brain tumor had caused his strokes. Over time and through a series of open talks, he accepted his diagnosis without ever breaking down, and though he was sad, he determined to face his illness and fight it. Since, he has adapted to this new life with ease and hardly any qualms. Ronnie’s will power to move on and make things as normal as possible for himself and the people around him set the tone for how he lives his life today and how others treat him. Truly, his parents gifted him this opportunity to assimilate this devastating news, and to work through how he was going to relate to having DIPG.mdhm_280617_1159-EditAfter the initial inflammation from radiation had settled by June, Ronnie was able to get around with a walker and eat by himself. He told his parents he wanted to walk, play basketball, and go to school again. His neuro-oncologist told his parents, “That’s not going to happen. He needs to aim lower.”

By August of 2016, after months of occupational, physical, and speech therapy, Ronnie was back at school, walking, and climbing stairs. His latest scan showed a 30-40% reduction in the size of his tumor. Ronnie’s doctor finally conceded, “I’m seldom wrong, but you’ve proven me wrong.”

At his own insistence, Ronil had his trach tube removed in September. Ronnie valued his quality of life over the doctor’s concern that he might need the trach again later.

Ronnie was accepted into a clinical trial at that time, which he knew was unlikely to change his outcome, but would cause severe side effects, “Even if it doesn’t help me, it will help other kids in the future, so I have to do it,” Ronnie said. He never had the chance to take part in that trial, though, as his tumor showed slight shrinkage just before it began.

Eventually, enough of the blood from his strokes had dissipated to allow more healing in his brain, and by December, Ronnie was even able to go snowmobiling, indoor skydiving, and driving the zip-car on the streets of San Francisco.

Through everything, Ronnie has continued to live his life fully and with integrity. As soon as he would arrive home from school, he’d start his homework, refusing anyone’s help opening his laptop or getting his books. Writing and typing were difficult and tedious due to muscle spasms he’d developed. He earned B’s in his first term in History and Science, insisting, “I want the grades to be my own effort only.”

Last Christmas, he asked his family and friends to consider donating to DIPG collaborative charities in lieu of giving him presents.

Manisha recalls a time when they were going to a party, and they told Ronnie to leave his walker home because a lot of people would be there. She said they’d help him to a couch where he could sit the whole time. Again, Ronnie declined help, saying he was not ashamed of people seeing him use the walker. He was proud of his achievements, and this was his “new normal.” He didn’t care what others thought, and he wanted to be independent as possible. He often told his family, “I’ll ask you if I need any help, but don’t assume it and do things for me to make my life easier.”

Ronnie proudly cruised around the school grounds on his motorized wheelchair in the same places he once walked, ran, and played basketball. On Halloween, he dressed as a “bloody doctor” and even had the courage to go up on stage in front of the whole school and won the runner-up prize. He put up a sticker on the side of his wheelchair showcasing his sassy attitude: Keep Staring and I Might Do a Trick.mdhm_280617_1036-EditBut in January of 2017, Ronnie started having trouble eating and walking, and a scan confirmed that he was in progression. He underwent emergency brain surgery to put in a shunt to treat hydrocephalus. Within the span of one week in February, he lost the ability to walk, stand, and talk.  He completed 12 sessions of re-radiation at UCSF, and he also received immunotherapy, but these did little to restore his functions, as his tumor was still in progression.

With precious little time to spare, Manisha and Milan contacted the team in Monterrey to see if they’d accept Ronnie into their program. At first, they turned him down, so the family created a video showing Ronnie eating and playing, proving to the doctors that he had the fortitude to undergo this treatment.

He had his first IA treatment on May 12th, and the tumor responded by showing a small reduction in size. After Ronnie’s second IA, he returned home to San Francisco for his middle school graduation, where he received an award from the principal recognizing his bravery, a page dedicated to him in the yearbook, and a standing ovation from the entire community for his achievements.19399971_1593149660709106_7754737882763508765_nRonnie’s 5th IA is scheduled for late July, after which they’ll go back home for a few weeks. In order to also receive the immunotherapy part of the treatment, Ronnie has to completely wean off of steroids. Manisha fears she may have moved too quickly when reducing his dose, as Ronnie lost the use of his right hand—one of the few things he could control—after coming off steroids. She weeps as she explains that even as she increased his dose again, he still can’t use that hand. The guilt she feels is suffocating.

Still, Ronnie and his family have found ways to continue doing the things he loves. He enjoys going to movies and restaurants, he can play board games with assistance, and he keeps up with politics and his favorite basketball team, the Golden State Warriors. Ronnie was ecstatic to get a personal video shout out from his idol Stephen Curry while undergoing treatment in Monterrey. Ronil and Sahil love to watch comedic Jus Reign YouTube videos together, which they can (hysterically) relate to as children of Indian parents. mdhm_280617_1192-EditRonil even inspired President Obama, who wrote him a personally signed letter from the White House where the president and first lady acknowledged his bravery and encouraged him to keep fighting.

Photographing Ronnie seated on the couch presented some challenges. Ronnie’s muscles are useless to hold him upright, so when he busted up laughing, he collapsed sideways on the cushions, which only made him laugh harder.

Ronnie’s ability to find humor where others might feel humiliation says everything you need to know about him. In the face of unimaginable pain, he chooses joy. You can’t help but feel happy just being around him. He wears his unwavering faith in the goodness of life on his sleeve, accepting his fate without resignation. Look at his smile and tuck it in your pocket. He’ll light up your life.mdhm_280617_1205-EditSadly, on September 1st, 2018–the first day of Childhood Cancer Awareness Month–Ronil passed away. Your legacy lives on in everyone you knew and touched, Ronnie.

To make a memorial donation:

https://www.gofundme.com/hope-for-ronil

 

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