#JohnnyStrong

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Johnny's Journey


Jonathon Bustamante (a.k.a. Johnny) a resident of Corona, was diagnosed for the third time, with Rhabdomyosarcoma. It's an aggressive form of childhood cancer that attacks the soft tissues of the muscles. It requires intense treatment which includes chemotherapy, radiation and/or surgery. At the end of September 2017, about 10 days after his 17th birthday and a month and a half into his senior year in high school, Johnny was first diagnosed. At that very moment, his and his families life were flipped upside down.  Treatment started immediately.  Johnny had to be put on homeschooling, his mom needed to put her new career on hold, his dad had to maintain a full time + job in Orange County and brother and sister were put on standby not really knowing what the next days would bring.

Treatment
Johnny was put on an intense treatment plan which consisted of 30+ rounds of chemo, which equaled out to be once a week and some were scheduled 5 days in a row with little to no breaks in between. With that intense treatment, his health declined rapidly. Weight loss, hair loss, the color of his skin, mouth sores, constant vomiting, appetite loss,  stomach issues, raw throat, his body not being able to fight off any illnesses, depression, multiple stays at the hospital... the list goes on and on.  


2018 late spring
Johnny's tumors significantly shrunk and scan results showed that the tumors were gone. During that time, Johnny managed to attend a few of his end of year senior events and walked with his class at graduation. The summer of 2018 came and went, Johnny was enjoying getting back to somewhat of a normal routine & enrolled in a few classes at the local community college. Towards the end of September 2018, he went in for routine scans/tests and they, unfortunately, showed that the cancer had come back. The same treatment plan began immediately, once again. Hearing the news that your son's cancer has returned was absolutely devastating for Johnny's parents and the entire family. Knowing what it had done to his body previously caused high anxiety. 


2019 Summer/Winter
Johnny's tumors were looking like they were destroyed (lack of a better word) from chemo and 30+ rounds of radiation in May. There was about a 90 day waiting period before Johnny could receive a PET Scan due to the high levels of radiation in his body.  Johnny's health significantly changed for the better over the summer. His hair grew back, weight gain, his strength and his overall well being was fantastic. But around August time he noticed, what looked like to be another tumor, growing near the inside of his right elbow.  Scans and tests were scheduled and it was confirmed that the cancer was back and there were 3 new malignant tumors.  Johnny had surgery on November 8th to remove his larger tumors. The surgery was a success. It was intense 4+ hours and consisted of a skin graft, large area of the inside of his elbow being removed, high chance of nerves being damaged and a few nights stay at the hospital. Jonathon has been receiving treatment and care at Loma Linda Children's Hospital these past 2 years. With the cancer returning 2 different times from the original diagnosis and a very bumpy road with the care he has received at Loma Linda, Johnny (now 19 years old) and his parents have decided to seek a second opinion and a fresh start with a new doctor at Children's Hospital Los Angeles (CHLA). Jonathon's new treatment starts the second week of December 2019. Treatment was once a week with an unknown end date. Johnny and family live about 55 miles away from CHLA. It's a hour and fifteen minute drive with no to little traffic, one way. Travel time could easily double in rush hours.  . 


2020
In the beginning of 2020 Johnny was already one month into his new treatment. Needing blood transfusions and iv hydration treatments frequently. Mom also injects him at home every 3 weeks to keep his blood count up during this intensive treatment. Johnny also received another 30+ rounds of radiation treatments. This now totals up to about 90 chemotherapy treatments and over 60 rounds of radiation. Fast forward to August, Johnny discovered another tumor in his arm. He had yet another surgery to remove it and biopsy it. While waiting for results he also had another PET scan, bone scan, MRI, CT scan and a bilateral bone marrow procedure.
Sadly, Just days after his 20th birthday - the family was informed of the devastating news that the cancer has actually spread to his bones. This spreading to the bones is now causing unbearable pain for Johnny who continues to stay strong and optimistic throughout his journey. Unfortunately, the treatments that are used for Rhabdomyosarcoma are no longer working for Johnny. As of now, Johnny has began a new clinical trial treatment with high hopes to stop the spreading. In addition to the new clinical trial, Johnny has also started a new Holistic treatment, along with a new diet and supplement plan.
Just recently, the family was told that the clinical trial was not a good match for Johnny and it is not helping control the spread of the disease.  The family is heartbroken once again and waiting for another clinical trial. 

This family has been through so much. So many highs and lows. Johnny’s body is tired but they are not giving up.

Their faith and hope is still going strong and they continue to wait patiently for their miracle.


As we all know the medicine, hospital visits, supplements, therapy, his special foods and all of the countless medical/travel expenses that come with fighting this battle can add up. We would like to help the Bustamante family in any way possible.

This is one of the many ways we can help show Johnny and his family that they have an endless amount of love and support.

You are not fighting this battle alone. #JOHNNYSTRONG

If you are interested in keeping up with Johnny's journey, there is a Facebook page you can follow.  Click the link below.