Courageous Journal 2022

Celebrate Life

Life is our Highest Purpose, our Sacred Trust.

The caregivers of San Juan Regional Medical Center and San Juan Health Partners Pediatrics have joined together in a shared mission and vision.

Together, we are working to create life better here, so your family can grow, play and thrive right here in the Four Corners.

Here when you need us. 505.609.6700.

Executive Director: Debbie Joslin

Client Services Director: Brenda Shepherd

Development Director: Shelly Diede

Editor: Debbie Joslin

Designer: Tiffany Kincaid

Writer: Shelly Diede

Board of Directors:

Megan Sandbothe

Randy Joslin

Stuart Buckingham

Chad Felder

Jessica Felder

The Children's Hope Foundation

The Children’s Hope Foundation assists children and their families with healthy beginnings, growth opportunities and support during times of crisis.

Our Care Points Program touches many families and children in ways such as:

• Gasoline & Food Vouchers

• Lodging Assistance

• Emergency Housing & Utilities

• Travel Expenses (related to treatment)

• Funeral Expenses

• Toys & Small Gifts

• Peer Counseling & Coaching

• End of Life Care

TABLE OF CONTENTS

04- LETTER FROM THE EDITOR

Life is chaotic and seems out of control for the families we serve at The Children’s Hope Foundation.

07- WORKING TOGETHER

PMS Roundtree Children’s Development Services

11- AWESOME PARTNER

NTEC

16- PEOPLE WHO INSPIRE

Fight like Isaiah! Faith over Fear!

22- RANDOM ACTS OF COURAGE

Inspiring stories of families who choose to be courageous in the face of adversity.

27- GRATITUDE

Gratitude takes on a whole new meaning when your child survives such a horrific accident.

31-THANK YOU!

We are blessed to live in a community where people care for each other and are generous with their time, attention and resources.

LETTER FROM THE EDITOR

Debbie Joslin Executive Director

HELLO FRIENDS,

Early this morning I made coffee, took my cup and went outside, gently closing the back door so I wouldn’t wake anyone else up. Stepping out onto the patio, I took several deep breaths, taking in the crisp, cool air. Fall arrived last week, my favorite time of year. The sky always seems to be a deeper shade of blue, almost purple in the fall. Brilliant colors of orange, purple and gray were painted across the early morning horizon. New Mexico sunrises and sunsets are the best I’ve ever seen! And this sunrise didn’t disappoint.

I can always count on the sun rising and setting. Since the beginning of time, sunrises and sunsets have come around faithfully every day. It’s the time piece that has been used to calculate the days and seasons. When the circumstances of life are chaotic and out of control, I can look up into the sky and observe the sun, steadfast in its rising to know that all will be well.

Life is chaotic and seems out of control for the families we serve at The Children’s Hope Foundation. When a family receives a diagnosis for their child of cancer, heart disease or brain tumor, everything about their lives becomes chaotic and out of control. Their child is poked, prodded and given extremely dangerous chemicals during testing and treatment. It is a very frightening experience for them.

They can have steadfast assurance that we will be there to comfort them, offering unconditional care and support throughout their child’s illness and treatment. Like the sun rising and setting, consistently every day, comfort and support is always within reach at The Children’s Hope Foundation.

we are offering unconditional care and support they can count on as they face unreal challenges

Jaise

Written by: Shelly Deide with Jaylana (Jaise’s mother)

OUR WHY

In March of 2018, when Jaise was 10 years old, he woke up screaming in pain and he could not move or walk. He had always been very athletic, playing football, wrestling, and most important to him, playing catcher on his baseball team. His parents rushed Jaise to the hospital and carried him into the emergency room. After numerous tests, they could find nothing wrong. Jaise still couldn’t move his legs and his entire body was in pain. His parents left San Juan Regional and took Jaise to the hospital in Durango. Once again, they were told there was nothing wrong. Knowing there had to be answers, they went to the emergency room at Children’s Hospital in Phoenix. Jaise was given a wheelchair and more testing began. Tests showed that his inflammation markers and white blood count were high, but there were still no answers. A physician told his parents, “I think he has cancer”. Jaise was told that he could no longer play baseball.

His family returned to Farmington more determined than ever to find a diagnosis. After a month at home, many more blood tests and no answers, Jaise wanted to return to school. His parents purchased a wheelchair so he could continue with his education. He never made it to school. While helping him dress, his mom saw that his right knee was very swollen, and he was running a fever. They went back to San Juan Regional, and he was admitted. Thinking he had an infection; they drew fluid from his knee and performed surgery. There was no infection, but his white blood cell count and inflammation markers were so high that he was flown to Children’s Hospital in Denver. The medical staff acted very quickly, and Jaise met with the infectious disease team and the rheumatologist. A team of rheumatologists found that instead of cancer, Jaise had severe Juvenile Rheumatoid Arthritis. Because his spine was inflamed, he was unable to move his legs.

He was placed on steroid treatments. As the inflammation and pain decreased, he had to re-learn to walk. He took his first steps on his own on Easter Sunday! For over two years, he took 9 pills a day and received infusion treatments. Now 14-years-old, Jaise is a very outgoing, healthy teenager. He plays football and is the catcher on his high school junior varsity baseball team. The only medication that he takes is Humira every 14 days. Way to go, Jaise!

believe in supporting the children in our community and we are very proud to support The

“We are thankful for our journey, but most importantly, the support he has behind him. Every prayer, dinner, donation and support are very much appreciated. We wouldn’t be where we are without the help of The Children’s Hope Foundation and our amazing community!”

Jaylana Jaise’s Mom

PMS Roundtree Children’s Development Services

Written by: Shelly Deide with AmandaSegobia, Administrator III

Roundtree has been in working with the community and providing early intervention and support to families of children ages birth to three in San Juan County since 1982. The Roundtree team has over 100 years of combined experience working to enhance a child’s learning and development through:

◊ Physical, Occupational and Speech Therapy, Developmental Instruction, Family Service Coordination, Social work, Nutrition.

◊ Individual therapy focusing on child’s developmental and medical needs

◊ Complete Autism Screenings

◊ Free in–home therapy

◊ Family support in navigating communication between medical and early intervention team

◊ Working in conjunction with New Mexico School for the Blind and Visually impaired (NMSBVI) and New Mexico School of the Deaf.

◊ Collaboration with Early Head Start, Home Visiting, The New Mexico Children Youth and Families Department, and Children’s Medical Services.

Many of the children helped by Roundtree are required to travel in order to obtain specialized medical care. The Family Service Coordinators at Roundtree work closely with The Children’s Hope Foundation to make sure that all families obtain the financial assistance needed for their travel.

40 years of service, congratulations to PMS Roundtree Children’s Developmental Services!

Picture left to right:

Luciano Decarvalho, PT, Caprie Strube, DS Intake Coordinator, Danielle Weahkee, DS/FSC, Christina Sarnowski, DS/FSC, Alexa Carmona, DS/FSC, Samara Deleon, LMSW, DS/FSC, Lillian Castillo Yazzie, DS/FSC, Tana Woods, SLP, Michele Duncan-Kreilick, DS FSC, Amanda Segobia, Administrator III, Lilly Davis, OT

TRI Energy Services, Inc. is proud to support the families in our community!

4610 W. Main, Farmington, NM 8740

Office: 505-325-7005   Cell: 505-320-7566

At Piñon Hills Dental, our goal is to serve our community with integrity and treat our patients with compassion in all things.

We do our best to stay ahead of the latest trends and advancements in dentistry while still keeping our fees in the midrange.

Our team members have been hand selected for their technical skills and aptitude for customer service. It takes each one of us to keep this machine in motion. Most of them have been with us for many years. Longevity and consistency are important for continuity of care.

We like each other’s company and enjoy being here every day. We think you will notice.

4725 Foothills Dr Suite A, Farmington, NM (505) 325-2859

pinonhillsdental.com

Before & After school program FOCUS 5 star accredited

Gold Star Academy & Child Development Center 1115 N Auburn Farmington 324-TOYS (8697)

Gold Star Academy East 4301 Largo Ste H Farmington 258-4282

Gold Star Academy Crouch Mesa 4500 Wildflower Mesa Dr. Farmington 325-9850

Smiling Faces Child Care 520 W. Elm St. Farmington 258-4049

Locally owned for over 20 years by Barbara Luna Tedrow

Free full day NM Pre-k for 3&4 Year olds since 2005

4615 Gila St. Farmington (behind old Haliburton on Main St)

Alexia

Written by: Shelly Deide

Alexia is a beautiful, happy eight year old little girl. She has a diagnosis of PURA syndrome with symptoms that include very low muscle tone, epilepsy, moderate/severe intellectual disability and global developmental delay. Due to her diagnosis, she requires total care. Alexia is a social butterfly, and her mother has described her as a happy, expressive child who loves to interact, laugh and “blabber”, as she is not able to articulate words. Because she is unable to circulate warmth like normal developing children, Alexia is often cold and loves snuggling with warm blankets (her favorite, second to naps and eating).

Alexia attends 3rd grade in a Life Skills setting where she enjoys learning and being with her peers. She has amazing parents who continue to be advocating, diligent and committed to her needs and happiness. No parent wants to witness his or her child sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, they find the strength within themselves to handle the stress and challenges that accompany their child’s illness or disability.

AWESOME PARTNER NTEC

Written by: Shelly Deide with Andy Hawkins

Generosity, giving back, and a strong sense of community are embedded values in the Navajo culture. These values form the foundation of the Navajo Transitional Energy Company’s (NTEC) corporate philosophy, which states: “We empower employees, people, and the communities where we live and operate. As neighbors, we give time, resources and financial support to the people and organizations that help our communities flourish. Those we interact with are treated with respect and compassion.”

The Children’s Hope Foundation has been one of the many beneficiaries of NTEC’s generous support since 2018. Contributions have come through direct donations, Title Sponsorship of our major fundraising events and the award of annual grants through NTEC’s Community Benefit Fund. The generous spirit of the workers from the Navajo Mine was on display when they spent two “Days of Caring” painting the walls of our new office building in 2019.

NTEC was created in a pioneering effort by the Navajo Nation to achieve greater sovereignty over its natural resources. It is the owner of the Navajo Mine, located south of Fruitland, New Mexico on the Navajo Nation, and owns and operates mines in Montana and Wyoming. Its purpose is to enhance

the development of the Navajo Nation’s resources and new sources of energy, power, and transmission. NTEC serves vital customer needs for power nationally and internationally and is committed to the development of the economic, financial, social and cultural well-being of the Navajo People and the Navajo Nation.

Looking toward the future, a diversified energy portfolio is a central focus for NTEC’s long-term strategy. In 2019, NTEC acquired shares of Texas Mineral Resources Corp. which provides the opportunity to participate in the development of one of the most significant rare earth deposits in the United States. In 2021 NTEC acquired Tacitus LLC, a helium development company, and in March 2022, NTEC announced a strategic investment in Enchant Energy Corporation, a Farmington-based company focused on developing a largescale platform for carbon capture services in the Southwest.

AWESOME PARTNER

NTEC’s operations provide thousands of jobs and support numerous community benefit initiatives. These programs include:

•

Community Heating Resource Program (CHRP)

CHRP provides free coal from the Navajo Mine to all Navajo and Hopi chapters and their members. To date, more than 25,000 families from all 110 Navajo chapters and 12 Hopi villages have benefited from this program.

• Girl Scout Stem Camp

NTEC sponsors Navajo Nation Girl Scouts STEM Camp for girls ages 5 to 17 years. Girl scouts, in partnership with NTEC are making it possible for girls to explore the worlds of science, technology, engineering, math and the outdoors. Girls also earn badges and patches.

• NTEC Scholarships

NTEC offers three college scholarship programs: Navajo Nation STEM College Scholarship, Neighboring Chapters Scholarships, and the Tribal College STEM Scholarship. Each scholarship is merit-based and open to full-time status, Navajo Nation residents who are majoring in a STEM field or industry-related area of study.

• Community Benefit Fund

NTEC understands that community projects are essential to building better and stronger communities. Since this fund was launched in 2016, it has supported dozens of community projects, awarding more than $1.6 million to over 170 projects. The Community Benefit Fund is another way NTEC keeps an eye on the future to ensure that emerging social, economic and environmental needs are addressed in a self-sustaining manner.

The Children’s Hope Foundation is proud to be one of the many organizations receiving grant awards from NTEC’s Community Benefit Fund. This support allows us to expand our programs and our reach so that we may help the most vulnerable children in our community. We are grateful!

Written by: Shelly Deide

It was a hard beginning for Elijah. This beautiful eight-monthold baby boy was born with his umbilical cord wound around his neck, causing Persistent Pulmonary Hypertension of the newborn (PPHN), a dangerous condition that may cause a baby to not get enough oxygen after birth. He was also born with an atrial septal defect (ASD), a hole in his heart between the upper chambers (atria). The hole increases the amount of blood that flows through the lungs.

At birth, when a baby takes their first breath, the pulmonary vessels should open. The blood should be able to flow through the baby’s lungs and pick up oxygen from the air they breathe. With PPHN, the blood vessels to the baby’s lungs do not open fully, and the brain and the body may not get enough oxygen. Too much pressure builds up in the blood vessels which can hurt the baby’s heart and lungs.

Elijah was on supplemental oxygen for five months and his family traveled to Children’s Hospital in Colorado on a regular basis so that he could be closely monitored. Thankfully, the hole in Elijah’s heart has remained very small, at 7 mm, and he is no longer dependent on extra oxygen. Though he will be checked on a regular basis as he continues to grow, there is a strong possibility that the hole in his heart will close on its own and not require surgery. We are standing by this baby boy and his family as he continues to grow and thrive.

Cross Country Well Service is proud to support the children of San Juan County through our partnership with The Children’s Hope Foundation.

Navajo United Way is a 501(c)3 nonprofit established in 1982 by a group of Navajo citizens who saw the need for increased health and social services. Through our grant-making and allocations program, Navajo United Way (NUW) strives to empower and support human care organizations that serve to improve the lives of the Navajo Nation and neighboring communities.

PEOPLE WHO INSPIRE Fight like Isaiah! Faith over Fear!

Courage is defined as “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.” This describes all the children that we are privileged to know through The Children’s Hope Foundation, and none more so than Isaiah.

Written by: Shelly Deide with Sarah (Isaiah’s mother)

THE BEGINNING

He was only six years old when he began a journey that would be daunting for any adult. Isaiah is a smart, kind and funny little boy. In March of 2021, he started walking with a slight limp. His older brother had recently broken his leg skateboarding, and at first his parents thought Isaiah was mimicking his brother. The limp didn’t go away and got gradually worse over time. Isaiah began to lose his balance easily, but x-rays of his legs showed nothing wrong.

For eight months, through the spring, summer and early autumn, Isaiah’s parents sought answers as his symptoms continued to grow worse. In November, after endless doctors’ appointments and urgent care visits, when Isaiah’s leg started to tremble, his parents took him to Orthopedic Associates. At first, the doctor thought Isaiah had injured a nerve in his shin and asked a neurologist who was visiting from UNM to examine him. The exam showed that, along with the limp, Isaiah’s left hand was much weaker than his right. The neurologist immediately suspected a brain tumor and arranged for Isaiah to be admitted to UNM Children’s Hospital at 8:00 the next morning. An MRI was performed and showed that Isaiah had a tumor the size of a golf ball on his brain stem. That day, one year ago, Isaiah began the battle for his life.

THE BATTLE

The procedure to obtain a small part of the tumor to biopsy was dangerous and complicated, requiring a seven-hour surgery. The tumor was entwined with so many nerves that the surgery left Isaiah’s left side weakened. He spent eight days in the hospital and even celebrated his seventh birthday in ICU before being released to go home and await the results of the biopsy.

After only two days at home there was a serious problem. A large amount of spinal fluid was leaking from the incision site and Isaiah was having uncontrollable pain. His parents rushed him back to the UNM emergency department. An MRI showed that spinal fluid was building up and putting pressure around his brain. That night Isaiah underwent his second surgery, and a spinal drain was inserted to release the pressure. This led to another four days in the ICU. Isaiah also contracted a serious infection, bacterial spinal meningitis, from

the fluid leak, and he remained in the hospital for two weeks receiving IV antibiotics.

During this time the culture from the biopsy came back. His mother describes the feeling of “hitting a brick wall” when being told that the tumor was cancerous: a medullary glioma. “No parent ever expects to take their child in for a limp and end up with him having brain cancer.” A video conference with Isaiah’s oncologist at UNM was held with pediatric oncologists from St. Jude Children’s Research Hospital and Colorado Children’s Cancer Center, to determine the best course of treatment. All three teams decided that, because the tumor is intertwined with nerves that control Isaiah’s left arm and leg, his speaking, swallowing and breathing, surgery was not an option. Radiation was also too large a risk because it would cause the tumor to swell, putting more pressure on the nerves in his brain. It was agreed that chemotherapy would be the best course of action.

Last December, Isaiah had surgery to implant a port in his chest, and the next day he began receiving his first round of chemotherapy. These chemotherapy sessions take place every Monday at UNM Children’s Hospital and are scheduled for an entire year. Isaiah has three weeks of chemo and then one week off. Every three months an MRI is performed to determine whether the tumor is shrinking.

ON MONDAYS WE WEAR RED

Fight like Isaiah! Faith over Fear!

Every Monday, a six hour round trip drive to Albuquerque, and five to nine hours of chemotherapy treatments are very hard on Isaiah’s seven-year-old body. He has chills, stomach cramps and severe nausea, and sometimes he must use a wheelchair to leave the hospital. The chemotherapy also causes Isaiah to have a very low absolute neutrophil count (ANC). An ANC measures the number of neutrophils in the blood; the type of white blood cells that kill bacteria. A lower-than-normal number of neutrophils (lower than

500) is called neutropenia. Lower than 100 is severe neutropenia. The lower Isaiah’s ANC, the higher his risk of getting an infection, which can be life-threatening and requires immediate medical attention.

One Monday in September, Isaiah went to Albuquerque for the end of his chemo cycle number nine, his 27th treatment. He would be off the following week, and everyone hoped that he would stay well. The chemotherapy was on the quicker side and took only 3 hours. His ANC came back as 858 and he was not neutropenic. He was sick to his stomach all afternoon and not able to keep anything down, but able to go home that evening. After arriving home at 6:30 in the evening, and one hour later, Isaiah was taken to San Juan Regional Hospital with a fever of 101.2. By the evening his ANC had fallen to 284. High powered antibiotics and fluids were administered through his port. There were no beds available at UNM, so Isaiah remained at San Juan Regional for further tests. His ANC dropped all the way to 0 and came back up to 90 the next day. He needed a blood transfusion, and because he’s a cancer patient the blood had to be radiated and was flown in from Albuquerque. After that very long and hard week, Isaiah returned to school saying, “Mom, today I’m going to school, no matter what!” His mom wrote, “That’s our boy! He’s so strong, so resilient and full of life. He missed a full week but learned about blood types and how they’re determined, bones in the body, how to make birthday invitations, and how to make breakfast in the microwave by himself. His class sent him a load of get-well letters and drawings. Thank you for loving Isaiah and keeping him in your thoughts and prayers.” This past year, Isaiah has also been hospitalized with COVID and pneumonia. Once, when really exhausted he said, “I’m not tired. My body is just tired and doesn’t want to move.” Every Monday he wears a red shirt that says “Fight Like Isaiah! Faith Over Fear!”

THE HOPE

For all that he is going through, Isaiah must never be defined by his illness. He is an amazing little character who always has jokes and unusual facts for everyone he meets. This summer he attended Camp Enchantment in Capitan, a camp for kids in New Mexico who are cancer patients and survivors. His parents were nervous about letting him be away from home for seven days, but knew he was in excellent hands. His own oncology doctor and nurses were at camp to care for the children. With all he is going through, Isaiah finds the energy to be creative. He loves to swim, dance and sing. He entered two drawings in the State Fair where his penguin won a first-place blue ribbon and SpongeBob won 4th place. He was also very proud to throw out the first pitch in the final game of the Connie Mack World Series. He attended his first day of 2nd grade with a huge smile even though his chemo the

day before was very hard on him. He was sick the entire time that he was receiving chemo and sick the morning of starting school, but he still got ready and went. He is a whiz at reading and math, and even with all the school that he has missed, Isaiah is ahead of second grade standards. Though he can’t always attend his classes, he still gets 100% on the tests and has mastered all the 2nd grade math.

This little boy just keeps going and fighting! He is in physical therapy, working to regain his balance and strengthen his left side. No matter how tired he gets, he keeps pushing through with a smile on his face. He is improving, and the goal is to redirect his brain signals to his left side, getting him back to where he should be.

The best news ever is that with each of the MRI’s performed since Isaiah began his chemotherapy, the tumor is shown to be shrinking! After his nine-month scan on September 1st, his mother wrote “Big news!!!! Isaiah’s Dr. called me today about the MRI from yesterday morning. She said the tumor is SHRINKING

NOTICEABLY!! Praise God A Day of good news!” While the tumor probably will not go away completely, if it doesn’t grow or start to block fluid around the brain causing hydrocephalus, then it’s a win. Overall, it has gone from golf ball size to a medium strawberry size. Isaiah will complete his chemotherapy sessions in December and another MRI will determine the next steps to be taken.

We love this child, and because it will make him so happy to see this in print, we want to share Isaiah’s favorite joke. He laughs every time he tells this to someone:

“Why can’t the toilet paper cross the road?”

“Because it got stuck in the CRACK!”

No matter how brave, strong and positive he is, Isaiah is still just a little boy fighting a battle far beyond his years. Please hold him close in your hearts and in your prayers.

“Isaiah is an amazing kid with a story that he will use to influence others and make the world a better place. No matter what, this kid is the strongest, most resilient, positive person I’ve ever seen. His strength and positive outlook shine so bright through all his health struggles. He is STRONG, BRAVE, and HOLDS

ON TO FAITH!

We want to say thank you from the bottom of our hearts to everyone that supports Isaiah through his cancer fight! We live in an amazing community that comes together and shows so much love and support. We are truly blessed, and I know all your prayers are working. You all not only lift Isaiah, but all of us so much when we truly need it.”

Sarah Isaiah’s Mom

We are proud to support the children of San Juan County by partnering with Children’s Hope!

apluswell.com

(505) 325-2627

3107 B Bloomfield Hwy Farmington, New Mexico

We believe in supporting the children in our community. 3451 N Butler Ave, Farmington, NM 87401 (505) 566-1915

2010 San Juan Blvd (505) 327-9255

RANDOM ACTS OF COURAGE

Macin

Written by: Shelly Deide

Macin is a smart, curious and kind seven-year-old little boy. He is in the second grade here in Farmington and loves all things Spiderman, soccer and animals. Last Fall, Macin began to be sick a lot. He seemed very tired and wasn’t sleeping well. His parents took him in for a checkup, and after tests were run, they received the scariest news a parent can receive. Macin was diagnosed with Leukemia and flown to Albuquerque where he underwent a procedure to install a port into his chest for chemotherapy. Macin and his mom stayed in Albuquerque for 6 weeks while he underwent extensive tests and treatment.

Leukemia is the most common cancer in children and teens, accounting for almost 1 out of 3 cancers. Leukemia begins in the bone marrow, which is where new blood cells are made. The symptoms of leukemia are often caused by problems in

the bone marrow. As leukemia cells build up in the marrow, they can crowd out the normal blood cells. As a result, a child may not have enough normal red blood cells, white blood cells, and blood platelets.

Chemotherapy (chemo) is the main treatment for most childhood leukemias. Doctors give chemo in cycles, with each period of treatment followed by a rest period to give the body time to recover. Macin is now beginning his second year of a 3-year treatment plan. It’s a very hard situation for the family, but they are staying strong.

Macin thrives on being a big brother to his little brother, Gage, who is four, his sister, Avarie, who is two and the newest addition to the family, his baby sister Lyla who was born this past September.

Rhyker

Written by: Debbie Joslin

RELAPSE…Tests revealed that leukemia cells were growing and coming back!

his parents would travel to Albuquerque every week. With fondness we remember him being such a shy, quiet and sweet little guy who could come to The Children’s Hope office with his parents each week for assistance.

Rhyker’s mom writes, “The road to recovery has been one of the longest journeys Rhyker has faced. Some days have been harder than others, when you don’t have a choice, you keep pushing and you keep fighting. Rhyker shows us how strong he is every day. He keeps his smile and pushes through.”

Thanksgiving of 2022 will be five years into their journey with leukemia and Rhyker will soon turn 7 years old. His most recent tests showed no signs of cancer. He will soon be able to return to in-class learning at school and he is at home doing very well. We are all so thrilled for Rhyker and his family.

Those were words that Rhyker’s parents never wanted to hear. A routine bone marrow test in Spring of 2022 revealed that leukemia cells were growing again and Ryker’s cancer was coming back. This was very disappointing because Rhyker had received a bone marrow transplant just one year earlier. With the bone marrow transplant, they had high hopes that his cancer would go into remission. Unfortunately, it did not. His team of oncologists determined that the next step was to do Car T-Cell Therapy which occurred in the Summer of 2022. Because of all the tests, monitoring and therapy, their stay in Denver and away from home ended up being over 8 months long.

Rhyker was first diagnosed with leukemia on Thanksgiving Day in 2017 when he was only two years old. It was life altering news to receive such a diagnosis. Initially, he and

Mateo

Written by: Shelly Deide

Mateo, a beautiful, happy one year old baby boy was born with a rare birth defect called hypoplastic left heart syndrome (HLHS). In babies with hypoplastic left heart syndrome, the left side of the heart cannot pump oxygen-rich blood to the body properly.

Soon after a baby with HLHS is born, multiple surgeries, done in three separate stages are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. These surgeries do not cure hypoplastic left heart syndrome but help restore heart function.

Mateo was only eight days old when he underwent his first open heart surgery at Denver Children’s Hospital, and five

months old when he had his second. He will have a third surgery performed when he is between two and three years old, depending on how quickly his heart grows.

Mateo needs regular follow-up visits with a cardiologist to monitor his progress. This involves frequent trips to Albuquerque and Denver. Your support for The Children’s Hope Foundation allows us to assist Mateo’s family with all their travel expenses, and to give this strong little fighter every opportunity to grow into a healthy young man.

Demetrius

Written by: Shelly Deide

Elora

Written by: Shelly Deide

Elora is a beautiful, gentle 14-year-old girl who was born with Down syndrome. She is fully deaf on her right side with a BAHA implant. She has hearing loss on her left side with (E.V.A.) Enlarged Vestibular Aqueduct. This means she potentially could completely lose her hearing altogether.

She also has (SPD) sensory processing disorder, a condition that affects how your brain processes sensory information (stimuli). Sensory information includes things you see, hear, smell, taste, or touch. SPD can affect all your senses, or just one. SPD usually means you’re overly sensitive to stimuli that other people are not.

Elora has many heath issues and must travel to Albuquerque and Denver to see several different specialists.

Demetrius, is a smart, funny, energetic ten-year-old little boy and has been part of The Children’s Hope Foundation family for nine of those years.

Demetrius was born with IPEX Syndrome, a rare genetic autoimmune disease which affects only 1 in every 1.6 million people. Children with IPEX have abnormalities in the gene which controls the production of regulatory T cells. This causes other immune cells to attack the body’s healthy tissues. The gene is carried on the X chromosome, so most patients are male.

When he was only six-months-old, Demetrius received a bone marrow transplant at UNM Children’s Hospital and his family remained in Albuquerque for one year before returning home to Bloomfield. At the age of two, Demetrius’ immune system began attacking his own muscles, and for a time caused his eyes to move in different directions.

Two years ago, Demetrius developed Juvenile Rheumatoid Arthritis, and for a year he travelled every month to Phoenix Children’s Hospital for infusion treatments. Since last November, he has been able to receive home injections. He must now travel to UNM Children’s Hospital periodically to have testing done through the Immunology and Rheumatology Departments.

Your support makes it possible for The Children’s Hope Foundation to assist Demetrius’ family with the travel needed to access medical care for this little fighter.

“Elora is a very happy little girl. She is my sunshine, my very own angel here on earth! She loves music, dancing, drawing, painting, swimming, jumping on her trampoline, and she loves school. Elora just finished competing in the Special Olympics playing bocce ball. She placed 2nd and received the silver medal, just one point away from taking the gold! I thank God that she is a very strong and brave little girl!”

-MalenaElora’s Mom

RANDOM ACTS OF COURAGE

Kaliya

Written by: Shelly Deide

OUR WHY

Kaliya is a beautiful five - year - old little girl who has been fighting since the day she was born! Kaliyah was born with TAPVR, a rare congenital heart malformation in which all four pulmonary veins do not connect normally.

In Kaliyah’s case, the blood vessels coming from the lungs were connected with the right atrium instead of the left, causing a severe lack of oxygen. While still a newborn, Kaliyah underwent open heart surgery at UNM Hospital to form a connection between the pulmonary veins and the left atrium. She remained in the hospital for the first month of her life.

When she was only two years old, Kaliyah suffered from a stroke which resulted in brain injury and seizures. Since her stroke, she has worked with speech therapy and occupational therapy in order to form new pathways in her brain. She is on medication that helps to control her seizures.

This year Kaliyah has been so excited to start kindergarten! She is in special needs classes and making great strides. With a ten year old brother and an eight year old sister, Kaliyah was the baby of the family for five years. She is

thrilled now to be a big sister to a baby girl who was born last September.

The Children’s Hope Foundation has been with Kaliyah since she was just eight months old. With the support of all our sponsors,we will continue to help this family for as long as needed. Your donations make it possible for Kaliyah to travel to Albuquerque on a regular basis for neurological exams, therapy and MRIs to monitor her heart.

Louk

Written by: Shelly Deide with Candace (Louk’s Mom)

Life can change in an instant. It was a cold February day and as the backyard bonfire got going, Louk made the mistake of shaking the last dribbles from a can of gasoline over the flames. Fumes exploded and fire scorched his hands, arms and face. When the smoke cleared, 30% of his body had been burned.

Louk (pronounced “Luke”), who is 15 years old, was taken to the San Juan Regional Medical Center, and soon he and his mom were on a medivac flight to the UC Health Burn and Frostbite Center in Aurora, Colorado. They arrived at 1:30 a.m., and Louk immediately received critical care to stabilize him and care for his wounds. The burns to his chest, abdomen, arms, hands and legs required skin grafts. Doctors treated his face with an innovative technology called ReCell: spray on skin. This new treatment processes a small sample of the patient’s own skin into a cell suspension that is sprayed or dripped onto a wound. This suspension contains the cells necessary to regenerate the outer layer of natural, healthy skin. It all happens in the operating room.

Described as a happy go lucky teen, this young cowboy is home schooled and takes great pride in caring for his family’s livestock and competing in team roping. Louk approached his treatment with the toughness of the cowboy he is.“I’m alive. I live day by day” Louk said. “You can’t change the past, so you might as well get on with your life.”

But this cowboy was still a young boy undergoing a total of 10 skin grafts through eight surgeries, and he was a long way from home. He wanted his mom close. For many of the nights over the seven and a half weeks that Louk stayed in the Burn Center, his mom wore a gown, gloves and mask for infection control while sleeping in the room with her son. Louk came home the third week in April. By then, he was asking his Burn Center caregivers when he might get back to team roping. His caregivers told him “You won’t rope this summer.” Louk replied, “Watch me.”

On July 4th, he was team roping again at an event in Durango. He wore compression sleeves and gloves, but the fresh skin on his thighs blistered. Louk felt it was a small price to pay for getting back to his passion so quickly.

When he first came home, Louk and his mom drove the seven hours from Farmington to Aurora every Monday for treatments. Now, six months after the accident, they make the trip every six weeks for a series of laser treatments to smooth out his facial scars and improve their texture.

“Gratitude takes on a whole new meaning when your child survives such a horrific accident. I am eternally grateful for his doctors and his whole burn team. I am also very thankful for The Children’s Hope Foundation and their donors. Their assistance allowed me to stay with Louk at the hospital and makes it possible for us to travel for his continued treatment. It is largely due to the generosity of our community that my son Louk is not only healing but thriving!”

Candace Herrera- Louk’s Mom

Written by: Shelly Deide

Julian is a beautiful, happy nine month old baby boy who has already faced many challenges in his young life. Before he was born, testing revealed that he had Downs Syndrome, a genetic disorder which can cause physical growth delays, and mild to moderate intellectual disability. This prenatal testing also showed that his kidneys were not fully developed, and Julian’s parents were advised to terminate the pregnancy. Their choice was to bring this little boy into the world, where he joined his big sister who is ten and a big brother who is eight years old.

When he was born, Julian’s kidneys functioned normally, but like many children with Downs Syndrome, he has two common heart defects. VSD is a birth defect of the heart in which there is a hole in the wall that separates the two lower chambers, and PDA is a small opening between two blood vessels leading from the heart. Julian was also born deaf in one ear, with a slight loss of hearing in his other ear. He has just received his first hearing aid, which has made a world of difference!

Julian’s family travels to UNM Hospital at least twice a month for cardiology appointments, and hearing checkups. As he grows, Julian will be closely monitored to determine if heart surgery will be needed. Your support makes it possible for his family to access all the medical care that Julian will require as he grows.

Hi, there!

I’m Debbie Joslin with The Children’s Hope Foundation. My official title is Executive Director; however, I am so passionate about the children and their families we serve that I wanted to give you an opportunity to join me in what we do.

Did you know there are many children in our community who do not have access to the medical care they so desperately need? Cancer, heart disease, brain tumors and other life altering illnesses and diseases are not treated here in San Juan County. Therefore, most children who are ill in our community must travel to Albuquerque, Denver or Phoenix to access life saving medical care.

Will you join me in assisting these families so their children have the medical care that will save their lives? They are counting on you and me to make this happen. Parents of little children with cancer should not be worried about access to care, keeping the lights on or paying for groceries.

When you join me in support of these families through The Children’s Hope Foundation you are helping to keep the lights on, put food on their table and help them access lifesaving medical care.

There’s a giving envelope stapled to the inside of this magazine. Simply remove the envelope and place your generous contribution inside and mail it back to us. Or, you may go to our website, thechildrenshope.org and click on the donate button. You can also scan the QR code below to donate right now.

Such a simple act could save a child’s life. Won’t you join me?

With Gratitude,

Debbie Joslin Executive Director

Together we provide unconditional care and support for the children in our community. They count on us.

Our community support

Written by: Shelly Deide

We are blessed to live in a community where people care for each other and are generous with their time, attention and resources. When parents come to The Children’s Hope Foundation, they have received news that their child suffers from an illness so serious that they must travel to access the specialized medical care needed. We cannot promise them that everything will be all right, but because of the generous support that we receive from this community, we can assure them that we will provide assistance, comfort and care for as long as needed. We can allow them the ability to concentrate on their child, and the peace of mind knowing that help is available.

The greatness of a community is most accurately measured by the compassionate actions of its members.

-Coretta Scott King-

Along with thanking all our individual and corporate donors, we want to send our heartfelt gratitude to the organizations that have generously supported The Children’s Hope Foundation in 2022. Your contributions mean the world to the families we serve.

Thank you to The Northern NM Street Rodders, 100 Men Who Care, San Juan Community Home Builder’s Association, The Coyote Club and Summit Electric Supply for your commitment to our children and our community! G.W. Posey Memorial Golf Tournament

You

Invest in our kids!

Save the Date

Invest in our kids!

October 6th, 2023 at The Civic Center

Save the Date

October 6th, 2023 at The Civic Center

We will have boots, bling, brisket & dancing. More details will be available in 2023.

THANK YOU FOR YOUR GENEROUS SUPPORT FOR THESE COURAGEOUS LITTLE ONES!