Fighting for families affected by childhood cancer by serving, lifting, helping, loving, and healing.
T-Cell ALL (A type of leukemia)
Childhood cancer took the life of Miranda at the young age of 17 after a two year battle with leukemia. Miranda is one, of many childhood warriors, that demonstrated a light, courage, hope, faith, maturity and strength that can only come through facing death, fighting for life, and leaving the outcome up to Heavenly Father.
At the age of 15, in February 2013, Miranda woke one morning with pain in her right shoulder. She continued normal activities throughout the week as usual. But, Miranda’s arm continued to cause her pain. As the pain persisted, she was taken to get it checked out at the Provo urgent care facility.
The doctor examined her and said he thought it was rotator cuff irritation and treatment only required the use of Ibuprofen and rest. The diagnosis seemed strange because Miranda didn’t play sports and hadn’t done anything that would hurt her rotator cuff that week.
After two days of Ibuprofen, the arm pain went away, and she was back to normal. Miranda went almost three weeks without pain.
On March 26th, 2013 the pain returned. This time it was in Miranda’s left arm, and collar bone. Also, her throat muscles hurt when she swallowed.
Miranda and her family knew that there was something else, something bigger, going on with her. But, didn’t know what.
Miranda was then taken to Grand View Family Medicine to get evaluated for her new symptoms. There, the physician noticed Miranda had swollen lymph nodes at the back of her neck. The examination of Miranda’s arm caused Miranda a great deal of pain as she had to move it for the examination process. The doctor seemed to ignore this symptom all together. The physician said that she thought Miranda might have Mono and suggested running a couple blood tests: a CBC and another to look for Mono. In desperation for help and answers for Miranda, the tests were welcomed; anything that could offer relief or that might shed light on Miranda’s condition were willingly agreed to.
Miranda and her family discussed so many things about her pain and symptoms on the way home from that visit and every day forward. Miranda was always so sweet as she explained the same details she repeatedly told her family and the doctors.
Dosing Miranda with more Tylenol and Ibuprofen continued in efforts to give her comfort and relief as time passed to receive results, and hopefully answers. At the same time Miranda and her family searched for answers of their own, reading about her various symptoms and causes online: Bone Pain, Swollen Lymph Nodes, etc. The search ended at the mayo clinic website and listed diseases alphabetically.
The possibilities were overwhelming. The Implications, heart wrenching and painful.
Leukemia (*mouse click*)
That click then lead to reviewing the different types of Leukemia…
Acute Lymphocytic Leukemia (ALL)
That moment spoke with clarity that Miranda had Acute Lymphocytic Leukemia. A moment of devastation, but also a moment of understanding. A moment of faith, that someone knows Miranda, knows what she is facing, and cares to help guide her to the help she needed. As symptoms were reviewed, Miranda had two of the nine symptoms that were listed. At that moment it was between Lupus and Leukemia, with ALL being what seemed the correct answer. As Miranda and her family discussed the information, she was calm and didn’t react with doubt or fear…quietly, she stood and hugged her family. Then she left the room.
Miranda’s first thought, was to turn to her Heavenly Father in prayer. This would be her big trial. One that she had felt, one month before, was coming.
Miranda’s older sister, who was teary eyed and the rest of the family hugged each other and tried to offer comfort to one another. Parents hearts breaking as they looked into the eyes of Miranda’s sisters and brother. If a will of iron could keep Miranda here with us, that of her older sister would be more than enough. Miranda’s younger sister and brother were quiet, and tearful. Parents… heartbroken at the thought of the possibilities, but having no clue what the future might look like.
Miranda’s dad called various hospitals and doctors offices to ask about getting his child checked for Leukemia. All roads pointed to needing a referral to go to Primary Children’s Oncology clinic. But, without a referral, the office would not schedule an appointment. As the family thought about the experiences so far with physicians, it was clear that they would have to help the doctors consider leukemia as the source of her symptoms to get a referral. Without the diagnosis from physicians, there was no help for Miranda beyond things Miranda had already been pursuing with natural healing (foods, rest, etc). Persistence seemed to be the necessary key.
Miranda, her mom, and sisters were given tickets to Young Women’s General Conference for the Church of Jesus Christ of Latter-Day-Saints on Saturday. The family decided to turn the weekend of waiting for CBC results into a family staycation—staying in a hotel in Salt Lake City. The kids were excited! The girls would go to the conference, and the boys would hang out together.
During Miranda’s weekend away, the overall theme was pain.
Miranda was in pain the entire time. Every four hours she would take more Ibuprofen. But, that was only able to take the edge off her pain. Throughout this weekend the changes in her health were dramatic. She no longer could wash her hair or get up from the tub on her own. Her pain was debilitating and her family felt helpless in caring for her. Her mom called Grandview Family Medicine (after hours) to talk with a doctor about her pain, in hopes for stronger pain relief. The instruction received was simply to increase the amount of ibuprofen she was taking. This feeble solution brought tears to her mother’s face. It seemed there was no understanding of how much Miranda was hurting.
The doctor on the phone asked about Miranda’s blood test, to which her mom replied, “we are still waiting for the results of her CBC.” The doctor disclosed that he thought she probably had arthritis and proceeded to explain that pain would become a manageable part of Miranda’s life. The phone hung up and Miranda and her mom looked at each other.
“It will be okay Mom. Don’t cry.”
As is often the tragic case in childhood cancer, children worry about their parents, family, and those around them. Often, carrying not only their own burdens and fight for life, but also the fears and burdens of their closest family. …and so was true with Miranda.
This response from Miranda only caused more tears to surface. Miranda was given ibuprofen and settled in for the night at the hotel. One of the treatments the family adopted for Miranda, in lieu of anything that could treat her, was placing ice packs on her arm and collar bone at night. This seemed to ease her pain and help her get some rest. Miranda’s mom and dad took turns sleeping next to her or lying awake with her as she rested. As her pain would escalate, she would wake her mom to see if she could take more pills yet.
Sleep was something that alluded her from this point onward in her health and care. And so it was true for her family.
Miranda’s family would offer simple distractions from the pain, from tickling her arms and back, to rubbing her feet and hands, to playing games with her, singing with her on the Smule app, telling stories together, or just being funny with one another. The following morning Miranda asked to buy her an arm sling to help relieve the pain that came from the weight of her arm causing her muscles to put pressure on her bones. She explained that the weight of her arm was painful. She thought perhaps a sling would ease the pain.
There was no question, her family immediately went to Wal-Mart and bought her a sling and also a couple button-up pajama dresses, a snap/button-up shirt, and a skirt — clothes that didn’t cause as much pain to put on.
On Saturday, Miranda attended Young Women's General Conference with her mom and sisters. The family stopped at the Museum of Church history first. Time before the conference was limited but she wanted to look around as much as possible! The artwork on display was inspiring and beautiful! The kids were going from piece to piece taking photos and sharing their thoughts with each other and Miranda.
As Miranda continued through the museum she noticed an old man playing a keyboard dulcimer. He asked her and the family to sing I am a Child of God with him. They sang all three verses together. It was a wonderful moment.
The museum announced it was closing so Miranda and the ladies all headed over to the conference center. This was Miranda’s little sister’s first time attending a conference in the conference center. Miranda’s Dad and brother visited Temple Square while Miranda went to the conference.
Young women and members from Miranda’s church were all sitting together in the conference center. As Miranda made her way to her seat, several of the sisters from the ward asked, “what was wrong with Miranda’s arm?” After a brief explanation of her pain, Miranda shared she was waiting for the results of her CBC. Then, listened to the conference with all the women and young women.
“Dear sisters, dear young women of the Church, dear young friends, as an Apostle of the Lord I leave you a blessing that you will find your way on this journey home and that you will be an inspiration to your fellow travelers. It is also my promise and prayer that as you honor and live true to the covenants, the principles, and the values of the gospel of Jesus Christ, at the end of your journey Heavenly Father will be there. He will embrace you, and you will know once and for all that you have made it home safely. In the name of Jesus Christ, Amen.” — Dieter F. Uchtdorf
This seemed to be confirmation that this would be what Miranda would come to experience.
The next day, Sunday, Miranda and her family visited a ward in Magna. The speaker referenced Neil A. Maxwell having Leukemia. He also referenced a talk given by Elder Bednar.
Again, another confirmation that Leukemia would be the diagnosed answer for what was afflicting Miranda. Death however, wasn’t an option. Miranda, and her family, would fight. Together…because, Noone fights alone.
The family then drove out to the Great Salt Lake and parked at SaltAir and began to walk down to the sandy, salty, beach. It was beautiful. The sun was shining low in the sky and the temperature was comfortable. The family simply relaxed and enjoyed the peace of the outdoors. Miranda, her dad, and her siblings ran and danced in the shallow waters at the edge of the shore before Miranda found a stick and started writing words in the sand. She wrote; Faith, Hope, Integrity, Honor, Family, Love, and Eternity; in large letters, in the sand. These were precious memories, turned into priceless photographs, of her decision to fight, and what she was fighting for—so that time would never forget.
On Monday, Miranda’s CBC results were ready. The nurse at the doctor’s office said her CBC showed slightly low white blood cells and inflammation. The nurse said the doctor thought we should come back in two months if Miranda was still having pain, do the test again, and start looking at treating her for arthritis. This was extremely disheartening after just experiencing such an emotional and painful weekend.
What parent could allow their child to continue in pain for two more months without answers?
Miranda’s mom immediately picked up a copy of the CBC from the doctors office and made an appointment with Utah Valley Pediatrics to see Dr. Earnest Bailey. This appointment was a blessing; the doctor was kind and careful as he examined her arm. He talked to Miranda and looked into her eyes as she explained her pain. He took notes, and demonstrated a kind, caring, and genuinely concerned nature. Surely, he would do his best to take care of Miranda. Miranda’s parents expressed concerns that Miranda could have Leukemia. Though he didn’t think she had Leukemia, he ran more blood tests to help rule it out. The next day, a blood draw for another CBC was taken at the lab Dr. Baily used. The results of her blood test still indicated inflammation and low white blood cells, but the doctor didn’t feel that her counts were a pre-curser to Leukemia.
Miranda’s dad asked the doctor if a blood smear could be done, to look at the cells under a microscope rather than simply relying on counts in the test. Dr. Bailey agreed to do a blood smear, and sent orders to the lab for the smear. Miranda went to the lab in Springville for the blood to be drawn, again.
After drawing blood, the family went to the Springville Art Museum. Before going in, Miranda’s mom asked if she felt well enough. She replied, “I’ll be in pain regardless of where I am, at least here I can enjoy the artwork.” The doctor called to share the results that the smear didn’t show Leukemia. Still…. No tests were giving answers to Miranda’s pain. But, the allusive answer was already known, it would just be a matter of time and continued persistence.
Dr. Bailey referred Miranda to a Neurologist at Primary Children’s thinking perhaps the pain was being caused by some sort of nerve damage. Miranda was examined by Dr. Lloyd who checked her carefully. Dr Lloyd had her walk and move her arms so he could observe. Following his physical exam, he ordered tests that would check for Lupus. He felt that nothing neurological was going on and referred us to a Rheumatologist at Primary Children’s. So an appointment was set for a month away. In the meantime, Miranda continued to chase down answers with Dr Lloyd and Dr Bailey.
The results of the blood test Dr. Lloyd ordered ruled out Lupus. It was frustrating to be in and out of doctors’ offices and labs without getting answers or help. It felt like Miranda was jumping through the necessary hoops of the medical field, only to find another hoop waiting for her. The trouble with all this churn was the fact that Miranda was in pain, and without a correct diagnosis, couldn’t get the help she needed.
Miranda’s continued to show her sweet, patient spirit, which bore out everything with a quiet dignified manner. At night when she needed pain pills, her sweet voice would quietly and calmly wake her mom and family to help her.
The next big red flag showed up as swollen purple tonsils and small red spots on her skin in warm water. Everyone in the family cringed when they saw photographs of Miranda’s tonsils. Miranda promptly had another appointment with Dr. Bailey’s office, with the doctor on call. The doctor looked at her tonsils he said OUCH! He then filled a cup with water and offered her a drink. He said he thought it was a strep infection. After explaining Miranda’s entire history of her pain, lymph nodes, and now her tonsils, he had the nurse swab her throat to check for strep.
After waiting in the office for the results, the doctor returned to let us know that it wasn’t strep. The family had planned a trip in Las Vegas, and was concerned about taking her out of town. He assured the family that the hospital and doctors in Las Vegas were just as capable as the ones in Provo. He prescribed Miranda antibiotics and asked to schedule a follow up appointment with Dr. Bailey when back in Provo.
The trip to Las Vegas was a blessing. Miranda was able to eat out and enjoyed seeing one of her favorite standup comedians, Jim Gaffagan! It was also a difficult trip, in that Miranda’s symptoms increased and her pain, and the family’s worries were peaking. During the trip Miranda received a priesthood blessing from her father, which comforted her and assured her that Heavenly Father was watching over her. Miranda continued a regimen of cold packs, pain pills, and prayers. Each moment with Miranda was being taken and treated as a gift.
Over the course of our trip Miranda’s tonsils stayed large, angry and purple. Her bone pain was moving around her body now, and she began to have pain in her knee and hip, which made it difficult for her to stand up and walk. Miranda’s dad called around to find a wheelchair and drove 40 minutes across the big city of Las Vegas to get one for her so she could continue to do activities with the family over the weekend.
The family had planned to take the girls to the Las Vegas temple to do baptisms for the dead. Miranda knew that she wouldn’t be able to walk into the baptismal font, but she felt strongly that she still wanted to go. So, Miranda loaded up the family and her new wheelchair and headed out.
Miranda’s mom and sisters went into the temple, while Miranda, her dad, and brother pushed her around the temple grounds in her wheelchair. Miranda loved seeing the beautiful temple. She felt loved and cared for as she visited the grounds outside. The kids picked a flower and placed it in her braid. Being at the temple was the perfect way to end the family trip.
Upon returning to Provo, the next appointment was scheduled with Dr. Bailey. In preparation for Miranda’s appointment, her mom prepared a detailed history and list of symptoms of Miranda’s health. There was clear desperation in her mom and dad’s hearts and minds as they continued to see Miranda’s health decline.
Miranda had acquired more symptoms for Leukemia. Though the Dr was kind and respectful, he reiterated that he didn’t think Miranda had Leukemia. He said, “I’m confident she doesn’t have Leukemia.” He was concerned by her new areas of bone pain and felt her appointment with the Rheumatologist should be moved up. Dr. Bailey called Primary Children’s and was able to get Miranda’s appointment to Friday of the same week. The Rheumatologist wanted more blood work done in advance of our appointment with her, so Dr. Baily sent orders to the lab in Springville.
Another blood draw taken (one more of many, many, many to come). Miranda and her family prayerfully awaited the new blood work results, and hoped there would be answers.
The following day, a call came from Dr. Bailey. Miranda’s mom pulled over to the side of the road, to receive the phone call. Dr. Bailey sounded sad; and shared that Miranda’s blood test indicated she did have Leukemia. The answer was now confirmed. Dr. Bailey said Miranda needed to be seen the following day at 9:00 am by the Oncologist at Primary Childrens.
Miranda’s mom and oldest sister were sitting off the side of the road, in the van, crying and holding hands. Miranda’s parents, with her older sister, arrived home to share the news and results. Miranda immediately knew there was news. The latest blood test confirmed she had Leukemia. Miranda was calm as details of the phone call were explained .” The entire family embraced in hugs and tears. There was a lot more hugging, and crying that followed. Each sibling took a turn holding Miranda, and expressing their love and support for her. The overall feeling was one of gratitude that help for Miranda was finally coming—because the fight was now defined.
The next day, Miranda and her parents met with Dr. Barnett at Primary Children’s and he confirmed her diagnosis with his own tests. He wouldn’t know until the following morning whether it was ALL (Acute Lymphocytic Leukemia), or AML. He explained the details of both treatment plans. He didn’t sugar coat the reality of Miranda’s situation. It was clear the risks and logistics of Miranda’s treatment would dramatically change life as she and her family knew it. But, there was no way to really comprehend the magnitude of that change.
Miranda was facing a life threatening cancer, and the treatment process would continue to disrupt the family’s lives in unexpected ways. It seemed surreal to be presented with information about Make-A-Wish, and what that opportunity actually means—that life is literally held in the balance of this war against cancer. Dr Barnette gave some basic details about chemotherapy; from losing your hair, to losing your immune system, to complications, to hospitalizations and surgeries, and to many unplanned and unexpected disruptions. Miranda took in all the information with a calm maturity that was far beyond her years.
Dr. Barnett let her go home for the night, but she was to return the following morning to have surgery that would install a small device into her chest called a power port—this device would reduce the sheer wear and tear on her body that would otherwise be required to give (and take) her blood and administer, chemo, nutrition, antibiotics and whatever else was needed over the course of her treatment which would be at least 27 months. Dr Barnette then explained that after that treatment, Miranda would still need regular tests over the next 5 years to watch for a return.
The following day Miranda and her parents returned to the Oncology Clinic. Dr. Barnett shared that Miranda’s type of Leukemia was T-Cell ALL (Acute Lymphocytic Leukemia), a less curable form of ALL. They type information is necessary to outline the treatment process. The treatment time for Miranda’s cancer would be two years and three months. The doctor took time to outline the treatment plan on the white board, and answered questions. Miranda’s life would now be lived month-to-month, week-by-week, and day-by-day as the plan details given and updated. Usually requiring multiple clinic visits per week (often daily), lasting 6-7 hours a day, and requiring driving 44 miles each way—often in peak traffic. This made for some extremely long days for Miranda.
Miranda’s treatments worked well for over a year and a half. This precious time was a gift from God. Every day was cherished for the additional time with Miranda. Her courage and kindness shined to those around her. When she went to clinic appointments she would take handmade origami necklaces, bracelets, animals, and flowers, that she made herself, along with treats. She would kindly offer them to the younger children fighting alongside her. When she would see an infant or toddler child crying in fear of getting their port accessed, she would make efforts to smile their way and cheer and calm them with one of her gifts. She always wanted to reach out and lift others, but especially the young ones. Sharing a part of herself made her own burdens lighter. Miranda also participated in Nursing training videos to improve educational videos on port access/de-access procedures and blood and drug administration processes.
Miranda was hospitalized several times over the course of her treatment. She faced life threatening illnesses due to having no immune system, including sepsis. She had severe blood clotting around her port/port line which needed to be watched closely and required many injections to prevent further blood clotting. She received several weeks of radiation therapy and endless, seemingly innumerable chemo doses. This included severe allergic reaction to PEG which required replacing this part of her treatment with an expensive and painful drug called Erwinia which required many painful shots added to her treatment plan. Administering Erwinia could not be administered through her port and had to be injected by intramucular injection. Her treatment plan included many lumbar punctures to inject chemo into her spinal column and to analyze her spinal fluid. As is often the case, delays from illness or complications would constantly require adjustments and adaptations to her treatment plan.
Miranda came to highly value the life-giving blood products she received on a regular basis, from platelets, to red blood cells. With each bag received, she received new life, including the ability for her blood to clot, sores and wounds to heal, and literally, the ability to circulate each breath of life she took. Many doctors and nurses spent hours, days, and weeks with her. Finally, she reached her maintenance chemo treatment phase.
Some of the more notable drugs administered in her treatment were:
Prednisolone (steroid which would cause bone pain and the all too often chipmunk cheeks)
Kytril for nausea
Zofran for nausea
Multiple Pain relievers
In her treatment process, she received over 2 million dollars in hospital and medical treatment and incurred many other expenses which her family were blessed to be able to absorb through insurance and sheer budget and spending leaps of faith. Every dollar spent, every hardship, every delay, every unexpected twist, every worry, every success… all of it… was worth the very last second with Miranda.
On January 1, 2015 Miranda’s Leukemia returned. She was hospitalized, and isolated, for nearly three months as she fought to rid her body of the Leukemia. She received massive doses of chemos that she had received at various phases in her earlier treatments. Each took major tolls on Miranda’s body. All in attempts to get her to a state that would make her eligible to have a bone marrow transplant. The months in hospital were beautiful and blessed additional time with her. But also, a time of great hardship and physical and emotional strain on her as she fought to stay…to stay with her family. But, all the time, continuing to build upon and rely on her faith that there is more joy to come after this life, and that she would be with her family again.
Amid the difficulties that were hers to bear, she became friends with the nurses and staff. She loved sharing her testimony. Miranda continued to turn this part of her trial into a gift which she shared from her heart. The treatments were harsh, and the disease, devastating. But, she would offer a smile and kind word to everyone that was able to enter her room. Her family continued to serve her daily. Her sisters, mother, and father attended to her at every need. Play, visiting, offering comfort, assisting her care, massaging her hands and feet, helping her sit, stand, and even breathe. Miranda was the center of their thoughts and attention.
Miranda, and her body continued to try to fight. As hard as she fought, the cancer fought harder, and the chemo and cancer kept pushing her past her ability to fight. Bleeding in her bladder and eyes. Pneumonia. Muscular and skeletal decline. Digestive issues. The disease would not relent to allow her to receive a transplant. But her spirit remained as beautiful as it ever was.
On March 20, 2015 Miranda was told that the treatments had failed and that there was no more that could be done to try to beat back the cancer. The treatments had grown to be as devastating to her health as the cancer that was fighting to take her. Dr. Barnette explained she would have perhaps a few weeks or longer to live. Miranda showed calmness and courage as she listened to Dr. Barnette explain what to expect. He was kind and caring as he asked Miranda how she wanted to spend the time she had left. Miranda expressed a desire to get out of the hospital and do some fun things with her siblings. The staff at Primary Children’s went to work to arrange things just the way Miranda wanted. Miranda was able to leave the following day. She was immediately let out of her room and she had the chance to meet another teenage cancer fighter (Devin Stuart) before being released from the hospital.
Miranda was able to be out and about with her family and do simple fun activities that many may take for granted. She still had to return to the clinic for several hours daily for blood and care to help her maintain some resemblance of strength…More precious time granted by Heavenly Father.
One of the activities she was able to participate in came from Devin’s mother…. Tickets for a final chance to attend women’s conference with her mom and sisters…Just as Miranda had two years prior. God be thanked for the lives that lift and touch others and for His tender mercies.
Early on April 25th, exactly two years from the day she was officially diagnosed, sweet Miranda was called home and took her final breath of mortality. Her long battle was done, and she joined the ranks of those warriors, and angels that have fought faithfully and valiantly, but were called home early.
This is childhood cancer.
No one fights alone.
Our children deserve more than 4%
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