Father and Son's Journey to Healing

Approximately two years ago, Jesse started showing signs of sickness, fatigue, headaches, and lack of appetite. We sought out medical treatment, and after some testing the doctor diagnosed him with hypothyroidism and low testosterone. The doctor put him on shots to help with the low testosterone and thyroid medicine. Jesse continued to work, but the symptoms continued and new ones developed. He still had a loss of appetite, extreme exhaustion, an extreme thirst, and memory loss. Jesse and I began to feel like something else was wrong.

During this time, Jesse was demoted from his position at work due to his supervisors thinking he had lost his "drive." This decision on top of the sickness hit Jesse pretty hard. He continued to work as hard as possible. Unfortunately, this affected his home life. He tried to stay awake and alert for me and our two boys, who wanted him to play as soon as Dad came home, but he was so exhausted that he couldn’t. This sickness was so demanding that his schedule consisted of fifteen hour days, comes home, sleeps, eats dinner, showers, goes back to bed, and does the same thing the next day. This continued for a year and a half.

Over this time, I began to notice a drastic change in his memory. He couldn’t remember anything short-term. He would tell me something and within twenty minutes would tell it to me again as if he’s telling it for the first time. Figuring something else was wrong; we went back to the doctor. The doctor wanted to do more tests and a CT scan, colonoscopy, and MRI were scheduled for January 2015. Unfortunately, insurance denied Jesse of the MRI due to his age. They required an in office memory test, which he failed greatly.

In December 2014, our son Ethan began having blood in his stool along with constant diarrhea. I took him to our local urgent care, where they couldn’t give us an answer due to not being able to see inside. We then took him to his pediatrician who was able to use a tool to look inside, but only about 4 inches. He was unable to see anything and referred us to a GI doctor for a more in depth look. The soonest available appointment was February 2015.

While this is going on, Jesse was still experiencing his symptoms. His uncle told us about UC Irvine and convinced us of the care and attention he would get down there. On January 21st, 2015, after Jesse had worked a fifteen hour day, we decided that enough was enough. I called my sister and had her come and pick up the boys. We were going down to UC Irvine to figure out what was wrong with Jesse. We got down to UC Irvine Emergency room at 11:45 PM. They immediately took him back into a room and did blood work and a complete comprehensive work up of his past and present symptoms. He then went back for a CT scan and MRI of the brain. By this time it was 1:00AM and exhaustion had set in for both us. We were now waiting and praying for some results that would explain the past two years to us. Around 3:00AM, the doctor came in with life changing news. Jesse had a brain tumor that was 18mm big pressing against his pituitary gland. This news shook us to our core, and we had no idea what we were going to do from here. Luckily, we were blessed with some amazing doctors who sprang into action. We immediately notified family members of this news. At this time my dad had contacted Jesse's work to update them with what was going on.  The doctors came back in and let us know that they needed to do a biopsy on the tumor. They said the location made removal of the tumor too dangerous, so a biopsy would let us know what kind of tumor it was and if it was cancerous. I prayed this was just a nightmare, however, it wasn’t. The biopsy was scheduled for January 23, 2015 at 6:00AM. However, due to emergencies, the biopsy was pushed back to 6:45PM, which we were grateful because it allowed for our family to come down and support us during this time. While we were waiting for the biopsy, the doctors came in and gave us a rundown of all possible risks. Hearing the risks he would be facing was overwhelming and terrifying.

Finally the time had come for the biopsy. I can remember Jesse being wheeled down to pre-op and praying over him. That was the hardest thing I ever had to do. Walking away from him, not knowing if I would ever see him again was near to impossible. The next few hours dragged on, and it was only when the doctor came out that I could finally breathe easy. The surgery was successful, and they were able to get some samples of the tumor to test.



The next day, January 24, 2015, Jesse was started on medicine to get his levels back to normal. The endocrinologist came in and let us know that his testosterone was low and he had hypothyroidism, which we already knew about. They also found out that he had diabetes insipidus along with high sodium levels, low potassium, and his adrenal gland wasn’t producing hydrocortisone. Jesse being the strong man he is began recovering greatly. Throughout the next seven days, Jesse had numerous blood tests done along with lumbar punctures to ensure that the cancer hadn’t spread to his spine. However, we still didn’t know what type of cancer it was. All tests came up inconclusive. The doctors sent us home, but continued to run tests.

On Wednesday, February 4, we had a doctor’s appointment back down at UC Irvine. We were hoping that they had an answer for us, but they didn’t. The doctors said they could continue to run more tests on the biopsy, but it would be beneficial to go in and get another piece to test that would bring about some results. I asked to speak with the surgeon to get a better understanding of the situation. The surgeon informed us that he was able to get a biopsy from the center of the tumor the first time and that that was the best spot to pull from. He told us that going in for a second biopsy, which would be more dangerous than the first time, would not be beneficial. We asked him if he thought we should seek out a second opinion. He agreed with us. After speaking with his neuro-oncologist, it was suggested that they treat Jesse for lymphoma while they send off the biopsy pieces to Mayo Clinic and City of Hope.

On the same day, my son Ethan had his appointment to see the GI doctor in Bakersfield. Since Jesse and I were down at UC Irvine, my sister had to take him. It was determined that he had ulcerative colitis, which are ulcers in the large intestines. The GI doctor scheduled a colonoscopy for February 12. This test confirmed the ulcerative colitis. Ethan was put on steroids and another medicine to get it in remission.

The next day, Jesse went back down to UC Irvine to discuss a treatment plan for the lymphoma. During this visit, they performed a lumbar puncture and ran more tests. It was at this visit that the results from the Mayo Clinic came in. Jesse had a very rare form of cancer, Germinoma. The neuro-oncologist let us the know the reason that all tests came back inconclusive was that this specific cancer is found in teenage boys, so they didn’t think to test for it. Thankfully, Germinoma is curable. The treatment plan was for Jesse to undergo chemo every three weeks with an inpatient of 5 days and outpatient of 3 days rotation. After the first round of inpatient and outpatient chemo treatments, and a whole lot of prayer, we went back to UC Irvine for a follow up visit and an MRI with high hopes. That was when we got our first set of good news. The doctor pulled up Jesse’s first MRI next to the one they just did. We looked at it in awe. The tumor was gone. The doctor said they needed to continue the chemo treatment as if it were an antibiotic to make sure any cells that we couldn’t see were gone.

As thrilled as we were about this good news, it was still hard seeing my husband suffer through the effects of the chemo on his body. The chemo was killing off red and white blood cells, along with platelets. Because of the chemo lowering his immune system, Jesse’s body was unable to produce new ones. This resulted in six hospitalizations with blood and platelet transfusions.

Throughout time of chemo treatments for Jesse, our son Ethan was still suffering with stomach pains, diarrhea, and blood in his stool. In April, the doctor switched his medicine to something stronger. While still figuring out what is going on with Ethan, Jesse began to complain about pains and swelling in his leg. He went to our local hospital where they treated him for blood clots. He ended up being treated for multiple clots in both over the next few weeks.

In June, Jesse’s doctors decided that switching to radiation would be the best next step for his treatment plan. The tumor was gone, and the chemo was taking a toll on his body. With UC Irvine being hours away from home, we chose our local cancer center for Jesse to start his radiation treatments. By this time, Ethan’s medicine was still not working, and he was placed on a third form of medication that was even stronger than the last two. I hoped this would work because it was the last resort before having to decide on surgery to remove his colon.

Unfortunately, after being on the medicine for three weeks, Ethan’s stool became completely liquid and saturated with blood. He began using the restroom constantly, and the pains became worse. I notified the GI doctor and told them of this change. On July 7th, I took Ethan in for some lab work. The next day, his GI doctor called and told us that we needed to go straight to the Children’s Hospital in Madera. He needed surgery and a blood transfusion. Over the next 10 days, the doctors performed multiple tests, a colonoscopy, and MRIs to decide the best treatment for Ethan. On July 17, Ethan had surgery to remove his colon. He still needs two more surgeries. Right now he has a colostomy bag and is adjusting to this new life. Our prayer is that after the end of the next two surgeries there will be no more colostomy bag and Ethan can live a normal life.



As for Jesse, he has started radiation even though insurance has denied coverage for it. They said it’s medically unnecessary for him to have it. His doctors insist that it is crucial for him to complete radiation to kill off any cells that could possibly come back. We are standing in faith that insurance comes through and has a change of heart.

To say the least, we still have a long road ahead of us. We have been blessed with tons of support from friends and family who have stood beside us through this journey. We greatly appreciate any help you are willing to provide. We thank Jesus for His love and grace and for getting us through the crazy year. He has made us strong and has united our family as a strong unit.