Our pal Joseph is a 5 year old Amsterdam boy who was recently diagnosed with Rhabdomyosarcoma (RMS). RMS is a soft tissue cancer that has developed in his head and neck. His tumor is inoperable, and a rigorous course of both chemotherapy and radiation are required to treat him.
This sweet, spunky boy was healthy and very much looking forward to kindergarten just one month ago. Now, he and his family are facing a nearly year-long course of treatment that will be physically, emotionally, and financially exhausting.
Joseph's mom, Tina, has had to stop working in order to drive her son nearly an hour each way, up to 5 times a week for the next year, to receive his treatments.
This gofundme, and the group "Joseph's Pals" are staffed by volunteers, people who know and love Joseph and his family, with their approval to do this. Many of us are parents of Joseph's closest friends. We are striving to do whatever we can to help our pal's family through this draining experience. All funds will be delivered directly to the Saez family to help offset the financial strain of traveling for treatments, medical, and household bills.
What follows is the story of what happened and when, as told by Joseph's mother, Tina.
July 15 - Saturday night. We notice Joseph’s left side of his face was a little droopy. We thought he was playing with us so we didn’t think much of it.
July 16 - He complained of pain on the left side of the face, so we took him to the ER, where they diagnosed him with Bell’s Palsy without doing any testing or even being admitted. They drew his blood to make sure it wasn’t Lyme Disease (and it took 6 days (Friday) to find out it was negative). Got some medication and were sent home with no indication of anything.
Nearly a week had gone by and nothing seemed to improve. Joseph continued to take the medications, and saw a specialist for Bell’s Palsy.
July 23 - Around the late afternoon, I was cleaning Joseph’s outer ears, just wiping them. Blood started pouring out of his left ear. Rushed him back to the ER. Still not admitted, doctors at the ER said they couldn’t see anything because he had “some blockage”. They cleaned a little out and then said it was all because his eardrum popped. I asked them how or why, and they were not sure, but it’s common. Gave us more medication, sent us home and told us to follow up with his ENT.
July 24 - We couldn’t get an appointment with the ENT doctor herself but we saw the nurse practitioner. She agreed that his eardrum popped and said it was from too much swimming, even though I told her that he hadn’t stepped a foot in the pool at all, the whole summer. She just gave us some drops and said it will heal on it’s own.
July 25 - His pediatric doctor has been calling and following Joseph’s every move. When we told him about the ear and how we only saw the ENT nurse practitioner, he said he was uncomfortable about it all and had us come into his office and he made some calls.
July 26 - Saw the ENT doctor herself. She looked into his ears and again tried to clean it out but every time she tried to clean it, it didn’t move and kept bleeding. She ordered a CT scan.
July 27 - Went for the CT scan.
July 28 - Got a call early in the morning from the ENT doctor and she said, “I think it might be a tumor, Albany Med’s emergency room is expecting you guys. Get there as soon as you can.”
Went to the emergency room in Albany Med, got admitted, and they eventually confirm it was indeed a tumor.
From July 28 to August 4 - We stayed in the hospital doing a variety of tests and scans. It was finally confirmed:
- Joseph has a rare form of cancer called Rhabdomyosarcoma(RMS): Soft tissue cancer. The location of the tumor made it even harder for doctors to decide what to do.
- The tumor is wrapped around the nerves and the bones (one bone is nearly gone already) behind his left ear. This is what caused the droopy face (and there is a chance that his face will stay this way permanently) and a loss of hearing in that ear (permanent with radiation).
- The tumor itself begins behind his ear, to the front of the face, and is going up to the brain (pushing the brain up), down to his neck and a ½ inch on his neck.
- They are not able to go in and remove the tumor because of the type and how aggressive it is around the nerves and bone. They don’t want to damage anything else. They have planned 43 weeks of chemo and radiation, which began on August 7.
Our goal is to reach $15,000 as soon as possible, with ongoing contributions accepted as well.
This sparkling little boy and his family truly need your help! Your generousity is highly appreciated!
- Steve Shrader
- Clara Balladares
- Jessica Brate
- Sue Druziak
Organizer and beneficiary
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