Hi my name is Amanda. I have been married to the love of my life (Noé Aguilar) for almost 20 years and we share 3 great kids.
Life isn't easy, weve been thrown more curve balls then most, and starting off strong with a Cancer Diagnosis.
Just to give a little back story in August of 2011 my husband was diagnosed with stage 4 medulloblastoma, its a rare childhood cancer. Following his diagnosis he underwent emergency brain surgery followed by 6 weeks of radiation, and 6 months of chemotherapy that involved staying in the hospital for one week each month for the infusions.
At the time we had just found out I was pregnant with our youngest child, and until that moment everything was great. After the diagnosis , we were given a 40% chance that he would make it to see our princess born.
Flash forward to today, it’s been 14 years, 4 month, and 6 days from the initial diagnosis, and until September we thought we beat Cancer.
Not that we didn’t have quite a few scares along the way, with shadows and stuff that they thought they had seen in the scans.
In August of 2024 is were this story really beings. Noé started complaining of headaches and pressure in his head, so the doctor decided to get a CT scan that showed the whole right side of his brain covered in blood and resulted in emergency surgery to evacuate the bleed.
4 days later he underwent a second surgery on the original surgery site to repair the covering of the brain and fix a muscle. He spent 2 weeks hospitalized before being able to come home.
Recovering from brain surgery is not for the weak.
For a few months everything seemed like it was going to get better, but usually things seem good until they're not.
In May he was falling a lot and having difficulty just standing still complaining of weakness , and that just wasn't him.
So we spoke of his doctor and she agreed that he needed to be admitted that I should bring him to the hospital where he was diagnosed with an allergic reaction to blood pressure medication and critically low sodium levels. He was readmitted for another 2 weeks.
He was doing great. He was up walking talking, laughing , joking, etc. He even went to look at a potential Job.
By the end of June he was starting to have more difficulty walking and the doctors couldn't figure it out.
Slowly but surely, he was losing his ability to walk, to hear, and to see and we were going back and forth to the hospital, and they had no answers, they were unable to explain what was happening.
Then in September after months of back and forth they saw what they believed to be a Tumor.
In October, he was completely unable to walk, and the doctors got more concerned.They ordered another MRI which showed that the suspected tumor had doubled in size.
At that point he was almost nonverbal, has no ability to walk, Sees in double vision all the time, and has resorted to using a whiteboard for communicating because he can't hear us.
At that point we were giving 12 months.
In November we went back to the hospital to discuss possible treatment options and was told that treatment could only prolong life but it wasn't guaranteed. The told us they no longer saw 12 months and that he probably only had 6 months.
6 months was probably all he had left. I’m still holding on to what we have and praying that he over comes all odds.1w
We’re struggling, I take a lot of time off work to care for him and go to frequent appointments and despite what most people think, I don’t get paid for time off.
These struggles have lead to us having to sell our home. Possibly move our daughters school. Struggle with food security, and even mental health due to the inability to leave the house because of difficulty with Noé's mobility.
We are also currently looking into purchasing A handicap van because it's getting increasingly hard to get Noé out of the house and into the car for these appointments. He's become stiff and doesn't transfer well.
Anything you can afford to give will be greatly appreciated. My family and I are extremely grateful.
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