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Jacob’s Story

Site created on April 5, 2021

When the calendar turned from 2019 to 2020, Jacob was a healthy 13-year-old kid. He was playing travel baseball and sports at his school. He was his school Activities Commissioner and working hard as a Life Scout in his Scout Troop. Life was busy and Jacob loved every minute of it. When the world shut down for the pandemic, our family spent lots of time playing board games, family whiffle ball games and having family paint nights and movie nights. The world stopped and we were enjoying every minute of the calm. In early June, Jacob began having some severe back pain. A visit to his doctor told us that it was nothing to worry about, just some bruising that would go away on its own. A couple of weeks later, on June 13, 2020, Jacob's pain became worse and had moved from his back to his lower abdomen. Worried that it might be appendicitis, we took him to Urgent Care where we were told to take him straight to the emergency room at Kaweah Delta Hospital. After running some tests that were inconclusive, Jacob was sent to Valley Children's Hospital by ambulance for additional testing. After several days of testing, Dr. Ozaki came in to tell us that the biopsy they had done on the small mass in Jake's abdomen was cancer. On June 18, 2020, just twelve days before his 14th birthday, Jacob was diagnosed with Stage 3 Anaplastic Large Cell Lymphoma AKL+, a form of Non-Hodgkin’s Lymphoma. Jacob was moved to the oncology wing later that day and his journey began. The very next day he had a preface dose of chemo. On June 26th, Jake got to come home for a few days to celebrate his 14th birthday and 8th grade graduation on June 30th. On July 1st we head back up to Valley Children’s Hospital and Jacob started his first full round of chemo. His chemo included 5 straight days of inpatient chemo and if all was well, he would get to come home on the 6th day. There were very few times where he actually got to come home on the 6th day. After 6 rounds of treatment and many complications, ICU and ER visits, on October 31, 2020 Jacob finished chemo. He rang the end of treatment bell in style (who doesn’t love Lloyd from Dumb and Dumber) since it was Halloween. Finally, on November 16th, Jacob was released from the hospital for (what we thought was) the last time. Soon after he had a Pet Scan and MRI and on December 21, 2020, Dr. Ozeran gave us the best Christmas gift ever. The scans show no evidence of cancer anywhere in Jacob’s body. He was officially in remission! On February 5, 2021 Jacob had his medi-port removed and everything seemed to be perfect. Unfortunately, that did not last long. By mid-February Jacob was once again experiencing pain in his back. This time on the opposite side. On February 17th we took him into clinic for a check-up. We were concerned because his symptoms were very similar to those he had prior to diagnosis. Dr. Razzaqi ordered an MRI that day and on 19th we got a call that the MRI did show a small mass in Jacob’s lower left abdomen. He had a biopsy on February 25th and March 1st, our biggest fears were confirmed, the cancer was back. At that time, we were told it was just a small mass in his abdomen and he would have a few rounds of outpatient chemo, a chemo pill at home and he would be back in remission. We were also told that Jacob’s best chance of beating cancer for good was a bone marrow transplant that will be done at Stanford as soon as Jacob is back in remission. Soon after this news Jacob began having really bad headaches and episodes of being completely incoherent. He didn’t know his own name, were he was or even what common objects were called. He also lost his motor skills and had difficulty walking, talking and swallowing. After a few other tests they did a MRI on Jake’s brain. It was then we learned that the lymphoma had spread to Jake’s brain and was the cause of these new symptoms. He had also developed hydrocephalus due to the rapidly growing tumors in Jake’s brain. They immediately started treatment for both the cancer in Jake’s brain and the hydrocephalus. The treatment is very aggressive and will include both inpatient chemo and chemo pills at home. As soon as they can get Jacob back into remission, he will begin his bone marrow transplant journey. This will include a 3-5 month stay at Stanford. This has all been very scary and overwhelming. Every day seems to bring new challenges. We are so grateful to our family, friends and community for all of their prayers and support. We could not get through this without you all.

Newest Update

Journal entry by Shera Fagundes — May 16, 2022

So much has been going on lately, I thought it was time to gather our team to pray. Jake came off of steroids about 4 weeks ago. Shortly after he began throwing up 1-3 times a day, completely lost his appetite (we have to make him eat 1-2 saltines twice a day to take meds) and is very tired all the time (sleeping 18-20 hours a day most days). The doctors have ran all kinds of tests and all of his blood work is normal, so they are thinking it may be GVHD in his gut. They ordered a consult with the GI doctor and a scope but the soonest appointment is August 30th! Jake cannot wait this long. We are hoping at today’s appointment they will admit him and get things taken care of inpatient. As much as we hate to see him in the hospital, he really needs nutrition and some answers. He also had an appointment with his orthopedic doctor last week. Unfortunately, the avascular necrosis is worse than he had expected. Surgery to correct the damage would mean removing Jake’s talus bone and fusing his foot and leg together then running a metal rod up Jake’s leg to reinforce. This would be tricky because Jake has a large cyst right where the rod would go. This would also mean no flexibility in his ankles. The other option is physical therapy but that won’t correct the necrosis, just help Jake get stronger. This may mean Jake will never play baseball again. I say “may” because if you know Jake, you know he is going to fight with everything he has to get back on the field. He has already said that if that doesn’t happen, you can catch him on the golf course. This has been a hard realization but we know that no matter what, Jake will make the best of the life he has been given. He always does. As always, we are so grateful for everyone’s prayers and support. I will update again when we have more answers. 💚🎗

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