The following story is written by my 17 year old son who has cancer. He just wants to grow up, go to college and live life like you do. This awful disease has taken his freedom and given him pain instead . With your support I , his mother, would like to be there for him as he struggles through these days. He needs his mother to be there and hold him when things get bad.
In Sean's own words:
Hello my name is Sean this is my life story.
Born in the summer of 2000 I lived in Illinois for a 5 years nothing really happened at that time except I learned to ride a bike and how to swim.
2005 we moved to Quincy Il., it was a medium sized city, for a year. In 2006 My mom, brother and I moved to Springfield Missouri for 5 years , until 2012, but my cancer story starts a little farther back. 2009 after a summer of going to a daytime childcare sponcered by Springfield parks department , I told my mom that I had a bump on my right leg the 1st day of school. She took me to a dr in Springfield that told us he thought I should see a specialist in St. Louis. November 2009 after a MR I, they told me I needed to biopsy my leg and lungs. It was determined that I have Alveolar Soft Tissue Sarcoma. The alveolar means it's in my lungs.
We got the one in the leg removed only to find it (Moved) to my lungs! I cry every time I get bad news like this. Treatment for my lungs began right away. I spent 3-4 days in the hospital every 3 weeks. Until January 2010, then radiation started to my right leg. The radiologist told my mom if I didn't get radiation there, it was likely to return. The Dr started me on radiation treatment for 6 weeks. Since we lived 3 and a half hours away from St. Louis children's hospital, we were able to qualify to stay at the local St. Louis Ronald McDonald houses for those 6 weeks. During that time my mom wasn't able to work so she eventually lost our house later that summer.
The chemo treatment I received was really hard on me, I don't remember some of those times I was in the hospital. In April 2010, my grandma died the night before I received my last chemo treatment. She would spoil me and I miss her.
2011 was uneventful until I had a CT scan early fall that showed the cancer in my lungs started growing again. The oncologist I had gave me and my mom options for treatment and most were medications I could take by mouth. A few were through a broviac and pic lines. I have sensitive skin and seem to get irritated with the dressings for pic lines. In 2013 my oncologist determined I qualified for a trial drug at the NIH in Bethesda Maryland. The NIH flew us out and back once a month for 6 months. The drugs work on me for a while then they stop and the tumors start growing again, that's when we stop the drugs and look for new ones.
We stayed in Springfield, Missouri until 2016. I had a bone scan that showed the cancer had spread to my bones, in small areas. One was near my temple, my pelvic bone and arm. My mom told me it was time to try a different hospital, so we moved to Texas to get treatment at MD Anderson.
I started high school here and took FFA. I convinced my mom and dad to let me get a baby lamb to raise during the summer. Just as we were preparing for it, I started having a lot of pain in my back, neck. I got a CT scan and the cancer spread to my neck, wrapped around some nerves and it was pressing on my spinal cord. We were trying to get the immunotherapy drug keytruda but were told that since the cancer is in my spinal cord, they wouldn't let me on the trial. They told me the drug swells up the cancerous tissue and it would likely paralyze me if we did it. They recommended radiation to my neck and back , I'm glad I did, because it helped my pain. The area where they said there was a spot near my temple started to grow. The drs wanted me to let them treat it with radiation, but I was too scared. They told me all the side effects of getting radiation to your head: personality changes, cognitive disabilities, memory issues. I want to make my own decisions, and this is my body! As the days went on, I wasn't able to finish my freshman year of high school due to the pain I had just sitting, so the summer went on with more radiation treatments to different parts of my body as the cancer has spread in my bones. The drs suggested I have a PCA pump- it's a pain pump that I get a powerful pain drug, dilated through a pic line in my arm continuously. I can press the button every 10 minutes if I need an extra dose. It's in my right arm, the same arm that I have a fracture in because of the cancer has weakened the bone.
My oncologist said they may not have any more options once I finish this round of chemo. I'm not ready to quit! I want to get better and finish school, have a job, someday get married and have kids. I'm not a quitter!
This morning my mom helped me to the side of my bed, got me dressed and bathed me. I can raise my left arm to my mouth, but not my right. I have a lot of pain when I stand up and walk with a cane. The drs tell me I have cancer in both femurs, both arms, ribs, spine and the bump on my head. Last week my mom and I decided that I would get radiation to my head. The radiologist told us that if we didn't do radiation, the cancer would eat through the skull and get into my brain. My faith has been tested through this, it's really hard. I didn't choose this!!
Last week when when we heard that a hurricane was headed our way, my mom took me to her best friends house 2 hours away. We stayed there for 6 days. Our apartment seemed dry when we went back but my mom noticed mold growing on all the windows and some walls. I'm not sure what she will do, but I will keep fighting and ask for your prayers.
I'm asking for your support to help my mom and me. She works and isn't able to be home as much as I need her. She's the most loving mother and helps me the best she can. She knows my needs and helps me with everything I do, my appointments, daily living needs. Honestly, I don't want anyone else to help me but her. She is the perfect caretaker. Please help me to be able to stay with my mom throughout this time.
From a friends perspective:
I met Sean and Paula shortly after Sean had been diagnosed with cancer. He was just another young child, swimming with the other kids, laughing, and enjoying life, but for the painful treatments he was undergoing. There is one definite in their story Sean is a FIGHTER!! He wants to beat this awful disease! And, his Mother was going to fight with him every step of the way. For 8 long years they have fought, everyday.
Flash forward to 2017. Sean turned 17 in July. At the time, you could barely see the tumor on his head, 5 weeks later THAT tumor (one of many) is the size of a grapefruit. This battle in itself is tramatic. Add to this the fact that they moved (due to Sean's limited mobility)into a ground floor apartment in Houston 2 days BEFORE Harvey hit. Although their flooding was not severe, they now have mold throughout the apartment. Paula lost EVERYTHING in their garage. Bad for anyone, but for someone in Sean's condition this mold is deadly. They now, two weeks later, have to move. Paula will forfeit her deposit, have to come up with more money for deposits rent, etc. ALL of this while trying to find a new apartment while Sean is left alone. She can not get out and get the services provided for Harvey's victims, because Sean would be left alone. This was one more thing for this single mother to contend with.
In Sean's advanced stage, Paula is no longer able to work. Sean is weak, he can not get in and out of bed alone, feed himself, or bath with out her. He is on a pain pump to control the pain for the crumbling bones in his arm and the tumors that are in his bones, in his lungs, and on his head. He is scared to be left alone! He is in desperate PAIN. It is not safe to leave him alone, but Paula has few options. After moving to treatment areas, missing so much work while he gets those treatments for the last 8 years she has hit the bottom on finances. A hurricane was the piece that felled all that juggling.
For a single mother who needs to pay rent, keep food on the table, and pay for the many trips to MD Anderson for Seans's treatments, the situation is getting dire. No mother should have to chose, yet they still need a home. The bills are mounting, she needs our help. Paula has done this alone, for all these years. SHE NEEDS OUR HELP.
1) Please donate so she may have the time to care for Sean and not worry about rent and utility bills.
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