Nathan’s family is from Central Oregon. Nathan’s mom, Felila, tells about his diagnosis and many iterations of the treatment that followed.
Diagnosis, Treatment and Beyond
“Prior to Nathan’s diagnosis of T-Cell ALL, we noticed his neck was bumpy and he started having mild-hearing problems. He felt well, but had some unexplained mild fevers now and then that we thought were normal childhood illnesses. We took him to our family physician and had the Complete Blood Count taken. The result was normal but not optimal. A month later we took him to the ENT in Bend, OR, and was advised to undergo ear-tube and adenoids removal procedures and take one of Nathan’s neck lymph nodes for a thorough exam by the pathologist. Two days later he called us to meet at his office and gently informed us that the finding indicated leukemia. We were so sad and upset, but Dr. Basanez was prepared, he had sent the result to Doernbecher Children’s Hospital in Portland, OR.
In June of 2018, we were at Doernbecher for Nathan’s first meeting with Dr. Stork and her team. Dr. Stork was so wonderful and very supportive besides informative. Nathan was hospitalized. His spleen was so large, his liver function was bad, and the bone marrow biopsy confirmed the T-Cell ALL. He underwent the Induction chemo treatment immediately. After a week of chemo treatment at Doernbecher, his neck bumps were gone and we were released to stay at the Ronald McDonald’s East House, where we stayed for 7 days. We then moved to the West House and stayed 2 more weeks before heading home.
The Induction treatment took a month, and then Nathan underwent intense and invasive chemo treatment from June 2018 to early March 2019 with some hospitalizations involved. He entered into the milder and gentler Maintenance treatment phase in mid March 2019.
All went well and uneventfully until July 2021 when his hemoglobin was abnormally low, and intense stomach pain landed him at the ER 3 times that month. In September 2021, when we were scheduled to be at Doernbecher Infusion Clinic for his monthly maintenance treatment, his blood counts were suspiciously low.Â Dr. Stork completed Nathan’s chemo treatment, which was a month earlier than the protocol required because it was evident that his body was tired and he was admitted at Doernbecher Children’s Hospital due to his blood counts remaining low.Â His bone marrow biopsy result showed that his bone marrow was sparsely populated, only 40% while a normal child his age would have 90% or so marrow. The days that followed were so frightening and confusing. He underwent all sorts of blood tests, the good news was he had no known viral, fungal, nor bacterial infections. Yet he had such intense belly pain that they had to be given morphine for several nights.
The Infectious Disease doctor and Dr. Stork and their team finally found out that Nathan was infected with Mycobacterium Avium, an opportunistic non-tuberculosis bacteria that invaded him while his immune system was still repressed during the chemo treatment. He has been undergoing antibiotic treatment ever since, 3 different antibiotics by mouth and 1 by IV through his PICC line on his right upper arm. He has been much better since March 2022.
He had a wonderful summer. He has been schooling normally and happily as a fourth grader this school year. AÂ year after he completed his chemo treatment, his immune system finally has recovered. We are all hoping that his antibiotic treatment too will complete soon this year. His infection was unexpected, and while it is a curable infection it can take months to combat.
Travel, travel, and more travel…
During the first 9 months of his diagnosis, we traveled to Portland very often.Â For a month, we stayed at the Ronald McDonald’s House to be close to Doernbecher Children’s Hospital and Infusion Center.
After July 2018, we traveled to Portland every 10 days or every 2 weeks until early March 2019. From mid March 2019 until the completion of his chemo treatment in September 2021 we traveled monthly on average.
These travels required Michael, Nathan’s dad and I to take time off work under FMLA. While our employers and coworkers have been very supportive, the travel from Culver to Portland round trip during the winter months could be quite stressful. The travel during summer time was costly due to the gas price usually going up
Advice for Other Parents
While no child should ever suffer any serious illnesses such as cancer, for families who just learned their child has cancer the best thing to do is to stay positive. It is easier said than done, but it is the best way to maintain the family’s health and happiness in order to be able to help the affected child to recover while having a normal and happy life as much as possible during chemo treatments. Some people shared with us that in the childhood cancer life-journey it is oftentimes more difficult for the family than for the affected child himself/herself.
I believe the adults and older siblings who observe and care for their little one undergoing chemo treatments can be emotionally and spiritually affected, fearing the worst, and worrying about what will happen next. To live one day at a time and to focus on making everyday as bearable and as beautiful as possible for the affected child and for every member of the family will help to speed up healing.
And to accept that we can do what within our power as best as we must, while trusting everything outside our human-power to God (for those who believe in God) or to the Higher Being/Universe/Higher Power, will help to reduce stress, maintain good level of energy, stay healthy and positive. It is easy to work up our mind, but it is best not to.”
2023 – An Update on Nathan:
As of February 20, 2023, Nathan recently completed 15 months of antibiotic treatment (to combat an infection picked up during treatment for leukemia) AND his PICC line was removed! Feb. 5th was his tenth Birthday, and the first birthday after several years that he will not be on any medication! We are so happy for Nathan, and his family.
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