Our family has just happened to be one in a million... not one but two children affected by a central nervous system tumors.
In 2017 Ezra Almond was just a quirky but normal kid. A routine visit for a scoliosis revealed a mass inside his spinal cord. A month later Ezra had surgery at the Stead Family Children's Hospital. He had his spine taken apart and as much removed as doctors could. As it turned out there was not one but THREE tumors inside his spine! Two were removed, one remained but had to be zapped with radiation.
Ezra has made remarkable progress. Doctors didn't know if he would ever walk again after the surgery. Post surgery he had to go to a rehabilitation center for a month to recuperate. Over the next month the house had to be reconfigured so that he could come home. In February of 2018 he went through 5 weeks of radiation, and emerged victorious!
While he is permanently disabled due to damage from the tumors, he has gone from a wheelchair to a walker to a cane! He has played in team sports and has had an active role in his school since his return from treatment.
Let's face it, this kid is amazing!
The upside was that Ezra qualified for assistance from Medicaid after his surgery! The downside is that it was approved too late to pay the initial MRI that diagnosed his tumors.
The year after Ezra's surgery in December of 2018 his younger sister Brynn was referred for scoliosis. The MRI showed she had a mass on her brainstem. This mass is inoperable, and due to the location it is difficult to ascertain much about it. It remained asymptomatic, and she continued to have to be monitored every few months at the same hospital that diagnosed and operated on her brother.
This summer doctors decided the best course of action would be to do radiation to try to eliminate the tumor. Brynn is currently having radiation at Mary Greeley Medical Center in Ames.
Darn genetics anyway, what an unfortunate lottery to win! As we have determined, there is some sort of genetic link for the kids tumors, but we don't have a lot more information beyond that.
Even with good insurance there has been quite a bit of medical debt. Medical bills are currently in collection but the hope is to tackle that this year with help! If you would like to help put some towards the outstanding medical debt any amount that you can donate would help!
- Theresa Biebel
- Traci Isley
- Marcia Doyle
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