Joseph’s Story

Site created on June 14, 2005

A gathering of angels

appeared above my head

They sang to me this song of hope

and this is what they said

they said

"Come sail away, Come sail away, Come sail away with me!"

- Styx



Joseph began his battle against cancer on June 01, 2005 after a host of vague symptoms that culminated in a life threatening incident and resulted in the diagnosis of AML leukemia, an aggressive malignancy diagnosed in only 500 children per year in the US. After seven months of chemotherapy and numerous infections, Joseph successfully achieved remission in December 2005. He recieved a trip to Give Kids the World in Florida by the Make A Wish Foundation and we had a wonderful family vacation to Disney World for seven days. We enjoyed eight and a half months of remission, until July 05, 2006, when blood work done at a routine follow up visit with his oncologists showed the cancer had returned. He underwent an unrelated umbilical cord stem cell transplant on 10/09/06 and did reasonably well with full engraftment and no sign of leukemia left in his blood or marrow. But his poor body was so worn down by all the chemo and infections. A virulent CMV infection took root in his lungs that proved to be resistant to all treatment thrown at it. He spent four weeks in PICU on a respirator and unconscious. On 01/09/07 Joseph's physicians let us know there was no longer hope of survival and on 01/10/07 Stewart and I made the agonizing decision to assist Joseph on to Heaven. Our hearts are forever broken.

Joseph turned 13 on May 26th of 2006. He was active in Troop 25 of the Boy Scouts of America and attended St. Elizabeth Anne Seton Catholic Church, where he worked as one of the teen volunteers during vacation bible school this past summer. He had gone on several camping trips with the Scouts and days prior to relapse had ridden an 11 mile bike ride! He loved video games, Pokemon, babysitting small children, funny movies and puppies and would have been going into eigth grade at Wilson Middle School. He hoped to build robots when he grew up.



Newest Update

Journal entry by Sheri Sellars

I am not sure what drew me here today. I look back over the websites of the people whose illnesses I used to follow. It got to where I was damned if I did, damned if I didn't. Either I suffered the incredible envy of watching those who got better continue on....or I suffered the incredible bereft emotions of seeing the same pictures of the same children that I was looking at 10-12 years ago and who have passed away. It still stings.

Sometimes I cannot believe all we went through. In the middle of it, the whole picture just isn't there. It is day, by day, by day. The emotional toll. The financial hardships. The constant battle of hope against reality. The burning memories of Joseph's suffering. Sometimes I wonder why we did all we did. Others I wonder why we stopped. The days of nightmares are over. I no longer dream he is still at the hospital waiting. He has come to see me  in dreams and small signs; I do not much care if they are "real" by anyone else's estimation. They are real to me and bring me comfort and that is enough.

I have done a lot since Joseph left us. I could not, cannot imagine seeing him again and telling him I quit living after his death. It would make no sense, to give up on my own life because his was stolen from him. Instead I dug into the meat of it. I have earned 4 degrees since Joseph passed away, becoming the first woman in my family to earn a graduate degree. I have worked as a nurse and seen the other side of the bed. The understanding I have gained of medical treatment, its limitations and the human beings just doing the best they can to care for other human beings has been eye-opening. I harbor no bitterness. Just the wistfulness of wondering where and how my Joseph is.

Nick is turning 23 in a few weeks. Alex is 19. I wonder sometimes if they will ever read this journal and get a better idea of how it was then, when they both were still so young. I hope if they do it gives them a sense of how loved they were and are. Life goes on. Life is good and I am a good person in it. I love my boys, my husband, my opportunities. I would not be who I am now if Joseph had not been who he was. He is so much a part of me and changed so many fundamentals of my world view.

I have been diagnosed with PTSD since Joseph died and the greatest casualty has been my memory. I remember so little of who was there, writing, gifting, donating, supporting. Please know that I thank you. I thank you from the very depths of my soul.
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