Iron Gideon: some adventures are no fun at all

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When Sosy and AJ Robinson purchased a home in Canyon Lake three and a half years ago, life seemed to be going well. As the president of the Family Matters Club, a member of the Lioness Club and founder and chef of the Cooking Club, Sosy was very involved in the community and loving every minute of it. Life was good and the Robinsons were happy, their kids healthy.

At left is the happy and healthy Gideon before he got sick last April. Since his diagnosis, Gideon has gained 30 pounds. Sony says the medication he’s taking induces hunger and water retention.

That all changed one day in April when their 5-year-old son, Gideon, started having chest pains. Until then, Gideon had been a typical, high-energy little boy in good health. When swelling, redness and fevers followed the chest pains, the Robinsons took him to the hospital for x-rays. Nothing showed up in the x-rays and Gideon’s symptoms went away after a few days, so Sosy and A.J. thought Gideon was back to good health.

Gideon’s symptoms returned a month later. Additional testing was done, including testing for leukemia. Again, to the Robinsons’ relief, the tests were negative and Gideon’s pains went away.

In August, Gideon’s chest pains and fevers returned for the third time. Noticing that he looked pale, his parents took him to his primary care physician, who advised them to immediately take their son to the emergency room.

An MRI was ordered at the hospital. The MRI results showed lesions in his bones and chest. The specialist diagnosed Gideon with Chronic Recurrent Multifocal Osteomyelitis (CRMO). Sony says, “Basically, his body was attacking his bones, which accounted for the pain and inflammation.”

According to bonetumor.org, CRMO is an autoinflammatory disorder that mostly affects children. It comprises periodic bone pain, fever and the appearance of multiple bone lesions that can occur in any skeletal site.

“The origin of this disease is unclear, but genetics appears to play a role. The clinical and radiological features on the disease are curable and the diagnosis can be difficult,” says the website.

Sosy says, “The episodes he has from CRMO leave him in extreme pain. It hurts him to move in the slightest bit or to even breath.”

Over the next few weeks, Gideon became increasingly tired and pale. The Robinsons were told that it was probably due to CRMO. More tests were ordered the day before Gideon’s next doctor appointment. This time something showed up in his blood work.

Due to dangerously low blood counts, Gideon was immediately transported to Rady Children’s Hospital in San Diego where he had more blood testing and transfusions of blood and platelets.

The following day the Robinson’s received devastating news. Lymphoblastic leukemia cells were found in Gideon’s blood and further testing would be needed.

Just before Christmas, Gideon was able to accompany Sosy while she delivered wish list gifts to Canyon Lake kids in Canyon Lake on behalf of Santa (and the Family Matters Club). Photo provided by Sosy Robinson

“We were devastated that he went from having CRMO to having leukemia,” says Sosy. “He had been previously tested for leukemia and the tests came back negative. The specialists said he had rheumatoid disease, so we were shocked when they told us he had leukemia.”

Marrow and spinal fluid tests followed to determine what type of leukemia Gideon has. The results showed that Gideon has type B Acute Lymphoblastic Leukemia (ALL).

According to WebMD, ALL is a type of leukemia that starts from white blood cells in the bone marrow, the soft inner part of bones. It develops from cells called lymphocytes, a type of white blood cell central to the immune system, or from lymphoblasts, an immature type of lymphocyte.

Acute lymphoblastic leukemia invades the blood and can spread throughout the body to other organs, such as the liver, spleen and lymph nodes. But it does not normally produce tumors as do many types of cancer. It is an acute type of leukemia, which means it can progress quickly. Without treatment, it can be fatal within a few months.

Sosy says, “The news was a hard pill to swallow at first, but with the help of Rady Children’s Hospital and further research, we learned that he will have a 90 percent chance of being cured in the next three-and-a-half years because of his age and the fact that we caught it so soon.”

To date, Gideon has had eight transfusions of blood and platelets, three bone marrow aspirations, three lumbar punctures, and nine doses of chemotherapy. He had the last two chemotherapy boosts of the induction phase on December 18.

He’s also gained 30 pounds, ballooning up to 70 pounds, because of the steroids he has to take. “I have to prepare him eight balanced meals a day,” says Sosy. “It’s a good thing that I love to cook.”

She adds, “If the marrow test shows a low number of cancer cells, we will move to the next phase. The next phase, called the consolidation/intensification phase, entails intense chemotherapy medication that will give him major side effects, such as nausea and vomiting.”

Gideon has begun to lose his hair from the chemotherapy he’s already received in the “easy” part of his treatment plan. The Robinsons plan to take him back to the hospital to have his hair cut, so that he doesn’t have to go through weeks of losing his hair. As Sosy explains, “We have to take him to the hospital to have his hair cut and not chance a barber nicking or cutting him because he is high risk for an infection.”

Sosy and A.J. also had to find another home for their dog because of the sterile environment Gideon needs.

Gideon had to miss out on all the holiday festivities in Canyon Lake this year, including the Winter Festival in the Towne Center that his mom was a part of planning through her work with the Family Matters Club.

The Monday before Christmas was the first time in December that Gideon was allowed to be around other kids besides the kids in the hospital playroom. He was thrilled to be able to accompany his mom while she delivered wish list gifts to kids in Canyon Lake on behalf of Santa, something Sosy and the Family Matters Club does each year, and something Gideon looks forward to doing each year.

Due to the overwhelming concern for Gideon from family and the community, the Robinsons set up a Facebook page called “The Adventures of Iron Gideon” to help keep everyone informed of his progress. Sosy says, “We call him ‘Iron Gideon’ because of the port he had surgically implanted in his chest. He receives the chemotherapy through the port instead of his veins.

Gideon still has a long road ahead, including 24 weeks of chemotherapy treatment and three years of preventive treatment. In the meantime, the medical bills are mounting. The Robinsons are in the process of selling their kayaks and other items, and planning a fundraiser, to help with the mounting bills.

A family member set up a YouCaring account for those who would like to contribute to his medical fund. To follow Gideon’s progress, visit “The Adventures of Iron Gideon” on Facebook. To contribute to Gideon’s medical fund, visit www.youcaring.com/gideon-robinson-477674.