Apr 19, 2017 Latest post:
Jul 20, 2021
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In January 2016 we had our pediatrician look at Maya's left eye as we had noticed it drifted off. Our pediatrician sent us to an eye specialist and at that time Maya was diagnosed with Amblyopia (lazy eye) and we were told if we treated it we could reverse the damage. Maya could not see very well in her left eye so we were instructed to patch her good eye for 4 hours a day to force her left eye to work and come back in 6 months to re-examine. Over the course of 2016 we continued to patch her right eye and did have some improvement, but during her check up January 2017 the Dr. noticed her left optic nerve looked shorter than her right. So she wanted a 2nd opinion. We received a 2nd opinion and it was decided that her optic nerve did look shorter, but would need an MRI to see a better picture. On 4/4/2017 we went to Vandy to have the MRI. Maya had to be sedated and it was a very emotional and scary day for Maya as she didn't understand. The entire time we didn't think anything was wrong and were not concerned about the results. Once the MRI was over we went back to be with her and were told to wait for the Dr. to come in to discuss the results. About 30 minutes later our Eye specialist called us and told us that the MRI showed a mass on her optic nerve and that we would need to see a neurologist and oncologist the following day. This was the moment our lives changed...... The following day we met with the oncologist and he told us her mass (tumor) was most likely an optic nerve glioma. We would biopsy to find out for sure. He explained the procedure and told us it would be the following week. The vandy tumor board met and agreed a biopsy would be the next step. Originally they said they would go in through the top of her head and she would have some scarring, but after meeting with the ENT surgeon and neurosurgeon, they felt they could get to the tumor by going through her nose. So after blood work and a full day of appointments the following week, they scheduled surgery for 4/21, 2 days before her 5th birthday. At first we said no way, we are not allowing this to get in the way of her day - but the options weren't that great and they wanted to do it soon. So surgery was set for 4/21 at 11 am. We received the biopsy results and it confirmed she had an optic nerve glioma, a low grade, slow growing tumor. It was recommended we begin treatment immediately. Treatment meaning chemotherapy - for a year. We were was still in shock. Maya had another surgery to have her port placed. She started chemo the same day her port was placed - 5/16/17. Maya went through 10 weeks of chemo before a 2 week break. Maya received 3 month MRI's to check to see how the tumor was reacting to the chemo. Maya went through weekly chemo treatments until 6/2018. Maya had received 2 favorable MRI results post chemo where there was no detection of growth. PRAISE GOD.
October 29, 2019 Maya had her routine 3 month MRI and the tumor had grown again since her last MRI in July. It was almost the same size as when first diagnosed April 2017.
The best course of action at that point was to begin Maya on oral chemo that has proven the same positive results as traditional chemo. With this drug she would not have a port, no weekly infusions, no scares of her counts getting too low, and much better (if there are any) side effects. Maya began her new chemo December 2019 and could possible be on it for 2 years. She will continue with 3 month MRI's to see how the chemo is working.
Your prayers, love, and friendship mean the world to us! Make sure to read the journal updates to keep informed of Maya's journey.