Jacob’s heart story

Burris FamilyBelow, Janice Burris shares her son’s Doernbecher story. Thirteen-year-old Jacob is one of our 2015 Doernbecher Freestyle patient-designers, and he’ll be following up next week with a post of his own!

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Jacob was born a healthy baby boy thirteen years ago. He has grown up to be a great student, a dedicated athlete, and an all-around great person. Last May during a routine well-child/immunization visit to the pediatrician, we learned that Jacob had high blood pressure and a heart murmur that had never before been detected.

After follow-up tests were performed up at OHSU Doernbecher Children’s Hospital, Jacob was diagnosed with a heart condition known as a coarctation of the aorta. The aorta is the largest vessel attached to the heart. Jacob’s aorta had a pinch in it, much like a kink in a hose. The kink was causing very high blood pressure above the kink in his upper body, and simultaneously causing very low blood pressure below the kink, leaving his lower extremities in a state that is comparable to dehydration. In fact, the only way Jacob was getting any blood flow beyond his kink was by developing a bunch of small compensatory vessels beginning above the kink and ending below it. This was his body’s way of adapting to his specific situation in order to get blood flow to the lower portion of his body, and at that point it had been doing so for 12 years.

Last July, the cardiology intervention team at OHSU attempted to open up this kink by adding a stint. At this time, the intervention team discovered that what had been previously considered to be a kink was virtually disconnected, and repairing it would require heart surgery.

On September 5, 2014, Jacob underwent heart surgery. The incredible pediatric cardiac surgical team at OHSU successfully grafted a carbon-based tube in place of the disconnected portion of his aorta. The surgery itself took about seven hours and his recovery went well.

Jacob has since had two subsequent hospitalizations. Both were to remove fluid from his paracardium, which is the lining around the heart. During his time at Doernbecher Children’s Hospital, Jacob was nominated to be a Doernbecher Freestyle patient-designer by a member of our surgical team, Pediatric Cardiologist Dr. Rich Reed.

He’s doing great now and has since gotten all caught up in school with his peers and just finished up playing spring and summer baseball. Had Jacob’s condition continued to go on undiscovered/ untreated, he could have been lost.

Jacob really wants to help others who may be in danger of having a heart condition by reminding everyone to check their blood pressure regularly. A change in blood pressure is often the first indication something may be wrong with your heart. Detecting high blood pressure saved Jacob’s life and it could save the life of someone you love as well.

Here at home in Eugene, Jacob is an advocate for heart health awareness. All around town, Jacob passes out small pins that remind people to check their blood pressure. He’s also advocating for research to improve current newborn screening for CHD’s because his coarctation went undetected for so long. Jacob is honored to be a part of the 2015 Doernbecher Freestyle patient-designer team!

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Learn more about Jacob and how he’s helping spread the word about heart health on his website or follow along on his “Jacob’s Heart Story” Facebook page!

Meet Jacob and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

 

Additional coverage: “Jacob Burris, 13, preaches blood pressure checks, adds ‘Nike clothing designer’ to his resume” via The Register Guard, “Local middle schooler designs Nike shoe to benefit Doernbecher” via Eugene Weekly

The power of pretend: Chelsea’s Closet brings dress-up and play to hospitalized children

For a hospitalized child, a chance to play, imagine and socialize is powerful medicine. Jason and Alison Hicks experienced this firsthand with their daughter, Chelsea, during her cancer treatments at OHSU Doernbecher Children’s Hospital. Below, Alison shares her daughter’s story and explains how the Chelsea Hicks Foundation is bringing joy to patients like Chelsea, one costume at a time.

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When our two older daughters and Chelsea’s cousins visited her at Doernbecher, they brought dress-up clothes and tea party supplies. She transformed from a patient into a princess, a superhero or a monkey, and she was often spotted dancing in the hallways with a boa and tutu, trying to get other children or staff to play with her.

Dressing up changed Chelsea’s demeanor – she’d go from bored and isolated in her room to a state of pure joy when she dressed up. It didn’t take long before her dress-up and tea parties reached staff and other patients – children’s laughter is, after all, contagious! These moments provided respite from hospital rooms and worries about which treatment is coming next. Chelsea was known to show up for her clinic appointments dressed as something silly and spectacular to help her battle the “cancer bugs.”

Our daughter courageously fought Wilms’ tumor cancer for two years before losing her battle at the age of 5. We were heartbroken but inspired by her journey, so we started the not-for-profit organization, the Chelsea Hicks Foundation, and its dress-up and play program, “Chelsea’s Closet,” in 2009. We saw the power of emotional healing that went along with dress-up and play – this is what helped Chelsea during her treatments. We wanted to give those types of memories to other families going though extended hospital stays.

A rolling armoire stuffed with brand new costumes, accessories, shoes and wigs, Chelsea’s Closet visits Doernbecher Children’s Hospital every month, led by a team of lively volunteers.

During a Chelsea’s Closet visit, hospitalized children and their siblings, friends or family are able to leave their rooms and select a new costume and accessory to wear and keep. Volunteers lead the children in a musical hallway parade, and wrap up the visit with an imaginative craft and special snack. For older children and those confined to their rooms, volunteers always have special goody bags on hand, filled with nail polish, art supplies, stuffed animals and other treats. When they can, parents will often try to coordinate their child’s treatments around Chelsea’s Closet visits.8x10_1570 copy

In the six years since its inception, the Chelsea Hicks Foundation has been met with so much positive feedback from patients, their families and hospital staff that the frequency of visits has increased, allowing them to serve even more seriously ill children. CHF is committed to bringing the healing power of dress-up and play to even more children, through the help of volunteers and donor support. For more information on how you can help grow the Chelsea Hicks Foundation, please visit our website!

Fun in the sun that’s healthy for the skin

With the heat wave finally receding, now’s the perfect time to take your children outdoors and enjoy all the beauty of the Northwest. While staying active, experiencing nature and getting more vitamin D are all important for your little ones, it’s also important to remember sun safety.

The sun produces two main types of ultraviolet (UV) radiation that impact skin health: UVA and UVB. The two differ in their wavelengths – UVA has longer wavelengths – and some of the health effects, but both can damage skin. In general, most of the radiation we get is UVA, which is strongly associated with wrinkling and skin aging, and is also the type that’s found in tanning beds. UVB stimulates the skin to produce vitamin D, and tends to cause skin reddening and sunburn. Both types are implicated in skin cancer.

Skin cancer is the most common type of cancer, and tends to happen after many years of exposure to UV rays. Painful sunburns are much more likely to happen in children, so starting these sun safety habits early can help prevent problems later.

Infants 0 to 6 months: Avoid direct sunlight. An infant’s skin has less protective pigment (melanin) and is too sensitive for sunscreen.

  • Avoid walks between 10 a.m. and 4 p.m., the peak hours for UV radiation exposure, and use a stroller that has a sun cover.
  • Dress baby in lightweight clothing that covers the arms and legs, and a wide-brimmed hat. Baby sunglasses protect eyes and can be stylish at the same time

Infants 6 to 12 months: You can put sunscreen on your baby, but continue to avoid sun exposure through protective clothing and timing of outdoor excursions.

  • Use broad-spectrum, SPF 15+ sunscreen to uncovered areas such as hands, ears and the back of the neck
  • Apply sunscreen 30 minutes before going outside and reapply every two hours and after swimming or excessive sweating

Toddlers: Keeping sun wear on can be challenging. Consistent sun safety habits and simple education may help reinforce the routine.

  • Consider spray-on sunscreens for toddlers who won’t sit still. Don’t apply spray sunscreens directly to the face. Remember to reapply every two hours and after swimming or heavy sweating.
  • Encourage children to seek shade between 10 a.m. and 4 p.m.
  • Use cooling protective clothing, such as cotton. Consider clothing with an ultraviolet Protection Factor (UPF) of 30 or above.

Older children and teens: education and availability of sun protection are especially important at this age.

  • Keep sunscreen handy – for instance, in a school bag or next to the toothbrush.
  • Talk to your teen about the dangers of indoor tanning, and remind him or her that being tan is not the same as being healthy.
  • Be a good role model and protect your own skin!

 

Looking for more information? Learn more tips to protect your family from sunburns here and here. The Skin Cancer Foundation offers some excellent resources to help keep kids fit in the sunshine, choosing sunglasses for kids and more.

Jennifer Tsai, M.D.
Resident Physician in Pediatrics
OHSU Doernbecher Children’s Hospital

Our lemonade experience: the Charles family’s story

John Charles Blog

When he grows up, Doernbecher Freestyle patient-designer John Charles wants to be a pro athlete. (His favorite athlete? Damian Lillard, of course). He enjoys being outside, hiking and spending time with his dog, Teagan. Though you wouldn’t guess it by looking at him, John was diagnosed with Crohn’s Disease last year.

Below, John’s parents, Tony and Mary Charles, explain how John’s journey has impacted their family.

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When your 9-year-old child becomes progressively ill, is not eating and is losing weight, feels constantly tired and listless, is sent urgently to the hospital by your pediatrician and is subsequently diagnosed with a lifelong, chronic, and incurable illness that has significant potential complications long term, life kind of feels like it just served you a glass of pure, undiluted lemon juice concentrate – both for your child and for you as a parent.

Our son John was diagnosed at OHSU Doernbecher Children’s Hospital in 2014 with Crohn’s Disease, an auto-immune, gastrointestinal disorder characterized by symptoms too uncomfortable to describe in a blog unrelated to the specific condition. After four days in the hospital, a colonoscopy and an upper endoscopy (where the doctor passes a tube with a camera through the mouth, esophagus, stomach and into the small intestine), high doses of numerous drugs, including tremendously effective but highly toxic corticosteroids, our son finally started to feel better after months of having felt progressively worse.John Charles

John’s pediatric gastroenterologist at the hospital, Dr. Linda Muir, and the entire nursing staff at Doernbecher were simply amazing. Not only did they make John feel like he mattered, they demonstrated to all of us (John’s parents and his four siblings), that they cared. And they cared not just about John’s physical condition, but about John’s and our collective emotional state. They wanted to provide us with the information we needed to understand what was happening, to provide us the medical options in front of us and to ensure we had the support structure to cope with such a life-changing diagnosis. They recognized and helped us to recognize that the diagnosis had potential to impact not just John, but our whole family.

Dr. Muir has been so tremendously positive in her care for John. Through her encouragement, John has become faithful in taking his medicines (all 11 pills each day). Since his diagnosis, John has had one flare, which Dr. Muir got under control using steroids as a rescue medication. She explained that this was not uncommon and this helped John to understandJohn Charles Mariners the importance of adhering to his medication schedule.

Dr. Muir has been so invested in our son’s life and his well-being that she even nominated John for the Nike Doernbecher Freestyle program. After being selected this past spring for the fundraising program, John has been exposed to a remarkable experience, one that he hopes will help him to use his disease to build awareness of Crohn’s and to help other patients better cope with their diagnosis. The caring concern and attention we have received from Doernbecher, Dr. Muir and the staff have added large amounts of water and sugar to life’s offering, thereby significantly sweetening what otherwise could have been a bitter and sour experience.

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Interested in learning more about Crohn’s Disease and connecting with others? The Crohn’s and Colitis Foundation of America (CCFA) is a great place to start.

Meet John and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

Additional coverage: “Hockinson boy, 10, designs Nike shoe for Doernbecher program” via The Columbian

Celebrating tenacity: Doernbecher Hospital School Program graduation 2015

Every year, students from all grades in our Hospital School Program participate in a graduation ceremony. Like any end-of-year convocation, there’s pomp and circumstance, smiles and tears and plenty of time to reflect on the previous year and its challenges and accomplishments.

“Graduation is important for so many reasons,” said Hem/Onc teacher Anna Balmaseda. “It’s one way we can bring an experience into the hospital that students would otherwise miss. It’s also an opportunity for us to really acknowledge the spirit and conviction of our students.”

Early in June, Doernbecher School Program Hem/Onc patients, teachers and administrators donned full graduation regalia –caps and gowns constructed by students and staff – and paraded through 10S and the outpatient clinic, then back down the hall. Patients who were unable to leave their rooms had their diplomas delivered in small, individual ceremonies.

Below, read some of our favorite excerpts from Anna’s opening remarks.

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“If I had to think of one word that comes to mind to represent this student body, that word would be ‘tenacious.’ ‘Tenacious’ means that you keep a firm hold on what’s important to you. Your tenacity has been witnessed in your attendance in the classroom; we’ve seen it in your problem solving and adapting. You have been flexible without losing sight of your goals.

This is why we have such a wonderful time getting to know our thoughtful and hardworking students. It’s been an honor to come to better know your strengths and see your perseverance.

Congratulations to you all. This is your day – we’re here to celebrate you!Doernbecher Graduate Brylee

To the parents: We very deeply appreciate the opportunity to work with your child. We feel very fortunate to work with this group. Let’s just face it – your children are amazing!

I’d also like to acknowledge our very amazing partners in all this magic called Hospital School. We could not do this without the support of our district and medical partners.”

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Learn more about the Doernbecher Hospital School Program here.

Summertime food tips

For many childrensummer break means lazy mornings and afternoon swims. But for others, summer brings grumbling bellies and the pain of hunger. It’s estimated that 15 percent of Oregon families are food insecure. In the U.S., it’s estimated that 16 million children do not have enough to eat each day, skip meals, eat watered-down food or go hungry. Summertime brings an added challenge for parents because many school-aged children no longer have access to free- or reduced-price breakfast and lunch, and money for food runs even lower each month.

Local school districts frequently sponsor a free summer lunch program, which is often held in local parks and playgrounds. Even smaller rural districts are following suit. This year, there are 600 sites throughout the state offering meals. A list of Portland programs can be found here, and programs in other parts of Oregon here.

The slower pace of summer may allow busy families to spend time growing, preparing or harvesting foods to help stretch their dollar. Beginning steps in helping the dollar go further is making a weekly meal plan, looking at grocery store ads and selecting foods that are in season. Preparing breakfast casseroles, hot cereal, salads, soups and pasta or rice dishes from scratch helps save money, and they’re often more nutritious than pre-made meals or convenience foods. Involving school-aged children in menu planning and meal preparation helps them feel invested in the effort and more likely to try new foods.

Both WIC and SNAP allow families to use benefits at local farmers markets. Purchasing locally grown food that is in season offers up more nutrients and can be a festive event. The Sustainable Table is an easy-to-use website that lists in-season foods each month for each state and offers up nutrition information, cooking tips, links to recipes as well as the location of farmers markets.

Within the city of Portland, there are a number of community garden sites with plots available on a first come, first serve basis from March to June. You can learn more about the Community Gardens program here.

Some of my fondest memories as a kid were helping in our family garden and picking fresh green beans and corn an hour before dinner. Got a memory or suggestion you’d like to share? Leave a comment below!

April Mitsch, M.S., R.D.N., IBCLC
Feeding Clinic Dietitian
The Child Development and Rehabilitation Center (CDRC)
Oregon Health & Science University 

The vaccine every teenager needs

Odds are, you or someone you know has been infected with human papillomavirus, or HPV. It’s the most common sexually transmitted disease (STD) in the US, infecting more than 79 million Americans. More than 14 million people, including teens, become infected with HPV each year. HPV is also responsible for 70 percent of cervical cancer diagnoses, and can also be responsible for throat, penile and rectal cancer.

The good news is there’s a vaccine that prevents infection from the most common strains of HPV — and the vaccine is really good at what it does.

Q: Why should my child get the HPV vaccine?
As a physician trained in adolescent medicine, I often see teens and young adults who are devastated to learn they have HPV because they’ve always used protection. What they often don’t know is that HPV can be transmitted through any type of intimate sexual contact. You don’t have to have intercourse to become infected. If infected skin touches skin, the virus can spread. That’s why this particular vaccine is such an important way to prevent HPV.

Another sobering reminder: According to the 2013 Oregon Healthy Teens Survey, 45.2 percent of 11th grade students have had sex, and of those only 29.1 percent reported using condoms (which are important, but unable to prevent all HPV infections). While you can encourage your teen to make smart choices, at the end of the day, they’re going to make their own decisions. What you can do is ensure they complete the HPV vaccine series of three shots before they’re exposed to the virus.

Q: When should my child get the vaccine?
The HPV vaccine must be given before exposure to the virus in order to work. That’s why I recommend giving the vaccine to teen girls and boys (yep, teen boys catch and spread HPV, too) typically starting at age 11, but even as young as age 9. That may seem young to some parents, but remember, this vaccine protects against cancers and other diseases caused by HPV. The vaccine is given in three shots over six months and it is critical that your child get all three doses. If your child is behind or off schedule, we recommend completing the vaccine series. The HPV vaccine is safe and effective and, like all vaccines, undergoes extensive safety testing.

As parents, we want the best for our kids. Knowing that you can help prevent your teen from possibly getting cancer in the future, why wouldn’t you want to get him or her vaccinated? Talk to your teen and his or her doctor about HPV prevention. Click here for more information on HPV.

 

Jennifer Edman, M.D., M.P.H.
Women’s Primary Care
Assistant Professor of Family Medicine
OHSU Center for Women’s Health

Great Glasses Play Day 2015

Having a child with eye conditions that requires wearing glasses, contact lenses, or eye patches can be challenging and isolating for parents and kids alike. The Great Glasses Play Day, held locally on Saturday, May 2, from 2 to 4 p.m. at the OHSU Casey Eye Institute, is an international event designed to bring a sense of normalcy (and a lot of fun) to the lives of kids who wear glasses or eye patches.

The Portland event came to life with help from Ann of Little Four Eyes, an online support community for kids (and parents of kids) with glasses, Kristin Ellsworth of Peeps Eyewear and Jessica Butler of Eye Power Kid’s Wear.

“A lot of kids don’t see other kids in glasses or eye patches very often, so it’s an opportunity for them to get together and play,” said Jessica. Her son, Scott, was born with a congenital cataract in his left eye and has been a patient at Casey Eye Institute since he was 4 days old. “It’s really important for me personally just because my son has been through so much.”

The event gives kids with the opportunity to wear a patch or wear their glasses and not feel different for once, she said.

“Kids walk in looking kind of shy – you can tell their parents made them wear their patch,” Jessica said. “As soon as they start seeing all of the other kids and realize they’re wearing glasses or patches, too, they get so excited and really open up.”

It’s also a great time for parents and caretakers to meet up and find support, ask questions and share recommendations. Siblings and other family members are welcome, too – and they’ll be provided with glasses to wear if they start feeling out of place.

The event, which will feature carnival games, snacks, balloons and vision-related activities, is open to the public and to kids of all ages. Get more information and RSVP to the Portland event on Facebook here.

Once upon a time: Mae Lin’s Doernbecher story

“Once upon a time in the Kingdom of Big, a little girl arrived early – so early she surprised even her mom and dad. Being so tiny was fraught with danger, what with all that breathing to do! Worry ruled the kingdom. Luckily, genius giants were at hand (though everyone was giant to her). Using their jumbo-sized brains, hearts and doohickeys, they eased our pint-sized hero up to fighting weight, which was the perfect weight for a fighter like her.”

In case you hadn’t guessed, the “Kingdom of Big” in the story above is Doernbecher Children’s Hospital. The “pint-sized hero” is a little girl named Mae Lin (she’s now 7 years old), who spent the first few months of her life in the Doernbecher Neonatal Care Center (DNCC). Mae Lin narrated her story for a radio spot that’s being aired on local stations.

We turned to Mae Lin’s mom, Dr. Dawn Nolt, for another important perspective in Mae Lin’s Doernbecher story. Dawn is a pediatric infectious diseases specialist at Doernbecher, and her work takes her all over our hospital, including the DNCC. Below, Dawn explains how her medical background and her Doernbecher connection impacted her experience as Mae Lin’s mom.

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You learned some unexpected news at an ultrasound appointment. Can you tell us about that?

The ultrasound showed that my daughter was much smaller in size than what is expected at that point in a pregnancy. My physicians immediately placed me in the hospital and delivered my little girl, Mae Lin, two days later.  She was born at 28 weeks in the pregnancy (a pregnancy usually lasts 37-40 weeks).

It was expected that the amount of time she’d spend in the DNCC would be equal to the amount of time she should have stayed in my womb (as long as she had no unforeseen issues like infections or surgeries), so we expected her to be in the DNCC for about three months. Thankfully, she did very well and was able to leave at 2 1/2 months.

What was it like being both a mother and a doctor in the hospital where your daughter was treated?

I didn’t work with any DNCC patients while Mae Lin was hospitalized, which temporarily removed my role in the DNCC as a physician. Instead, I visited the DNCC as “Mom,” reassuring doctors and nurses that they should talk to me as a parent, not as a physician.

Like any new mother, I was worried about how Mae Lin was doing. However, I had worked with the DNCC doctors before when caring for other patients, so I knew they would do as wonderful a job with my daughter as they had with other patients.

What’s Mae Lin up to these days?

She’s your average first grader: eager to go to school and very proud of her hard work when she accomplishes her tasks. Mae Lin is friendly, and she’s pretty quiet until she’s comfortable with her surroundings. She thoroughly enjoys her extra-curricular activities and has weekly lessons for swimming, acting and martial arts (hence the “fighter” references in her radio spot). She loves geocaching and fishing and she’s always able to give her opinion when asked.

This year in school, Mae Lin’s class learned about stories and how they’re structured, so she’s had the opportunity to share her story with her classmates.

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Listen to the full radio spot below:

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For more amazing patient stories like Mae Lin’s (and artwork, too) go to amazingstorybook.com.

Volunteer spotlight: Meet Chemo Pal mentors Jennifer, Allie and Jen

Meet Jennifer Thornton, Allie Busby and Jen Peckham, three OHSU employees who volunteer as Chemo Pal mentors, a Children’s Cancer Association program that matches adults with kids undergoing cancer treatment. Chemo Pal mentors are easy to spot in Doernbecher’s halls with their purple shirts and oversized duffle bags, which are filled with games and toys. Their visits provide parents with the opportunity to meet one-on-one with physicians or take much-needed breaks from their child’s hospital room. The Chemo Pal mentors also offer friendship and a bit of distraction for kids undergoing treatment for cancer.

“Treatment can be a very scary and isolating process for kids, so the Chemo Pal is a mentor who can bring fun and laughter to their day to help distract them from what they’re currently going through,” said Jennifer T.

Though they were all drawn to the program by different motivations, their reasons for staying are the same: the chance to brighten a child’s day – even if it’s just an hour at a time – while they fight a very tough battle. Mentors develop special bonds with their Chemo Pal matches and families.

“I’ve seen my match grow up from this tiny little guy into a regular boy. It started as a professional relationship, but it’s developed into a family bond,” Allie, who has put in about 480 hours of volunteer work in the last five years, said. “I sit with him during appointments, play games with him and his siblings and battle over LEGOs. I’m admittedly not very good at building LEGOs, so he’s teaching me.”

Jennifer T., who has volunteered as a Chemo Pal mentor for the last seven years, has developed a special relationship with her Chemo Pal match – a  2-year-old boy whose big personality revealed itself on a visit to his house for a play date.

“As soon as his dad opened the door to let me in, this quiet and reserved boy jumped on top of the couch yelling, “BAG!” while pointing at my duffle bag,” she said. “He had me grinning from ear to ear and I knew at that moment we would be great pals.”

In the last five years, Jen P., who also helps facilitate Chemo Pal training, has been matched with four incredible kids. She loves seeing their faces light up when she walks in the room and is often struck by how resilient kids can be.

“It’s amazing to think that they’re here for chemo, but they can still have joy in the midst of it,” she said.

One of Jen P.’s fondest memories took place outside of treatment when she accompanied her Chemo Pal for an interview at a studio. She enjoyed seeing the young girl revel in the pampered experience of having her hair and makeup done prior to the interview.

Being a Chemo Pal mentor can be difficult, of course. Jennifer T.’s first match passed away when he was 3 years old, but she’s grateful that she was able to spend the last nine months of his life with him as his Chemo Pal.

“His passing was very difficult, but I am constantly reminded of his big smile, great sense of humor and loving heart,” Jennifer T., who still keeps in touch with his parents, said. “I learned so much from him during our time together.”

Another thing mentors often learn: how truly inspiring pediatric cancer patients can be. Kids’ bravery and resilience make a mark on all three Chemo Pal mentors.

“Kids are so small and yet so powerful,” Allie said. “It reminds me that I can get through anything – I just need hope.”

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Interested in becoming a Chemo Pal? Learn more about the program here.

 

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