To our Families and Friends:
We want to give you all an update on what has been going on in our lives over the last couple of months. Somewhere near the end of January, we noticed that Sebastian's stomach appeared to be enlarged and somewhat hard. We took him into the doctor on Friday, February 6, 1998. After a series of tests, it was determined that there was a tumor about the size of two grapefruits originating from his right adrenal gland (gland above kidney). We were then referred to University of Iowa Hospitals and Clinics.
We took Sebastian there for a series of consultations on Tuesday, February 10. On Wednesday, February 11, he had surgery for a biopsy of the tumor to confirm what the doctors suspected was a cancer called NEUROBLASTOMA. The tumor is too large at this point to remove it surgically. It is touching on too many organs and the risk of bleeding is great. They also did a bone marrow biopsy to see if the cancer had spread to his bone marrow and to put in a central line. The central line is a long tube that goes into his chest and is under the skin and drains into a vein in his neck. About eight inches of the tube is outside of his body and is safely secured with a special tape. Once the initial soreness wore off, the line does not bother him at all. It is there so that they can give him his chemotherapy, IV medicine and fluids and give him blood and draw blood when they need to without going through the process of sticking him with a needle every time.
In the middle of the night before Sebastian's surgery, I went into labor with Spencer. After a great deal of denial, frustration, confusion and prayer, Spencer Michel was born at the Super 8 Motel in Coralville, Iowa-the substitute homebirth site. Contrary to the newspaper article, there were no Super 8 employees present at the birth, just my very dependable and dear friend Tonya Lindskog and a midwife whom I had never met before that day. God blessed me with a very joyous and effortless labor and birth experience while Steve Sr. was with Sebastian during his surgery on February 11.
On February 17, Sebastian had his first cycle of chemotherapy. He has done remarkably well with very minimal side effects. A cycle consists of seven days of chemotherapy given through his central line. They give him lots of fluids and check his blood every day to make sure that he is getting the right amount of chemo. The goal is to shrink the tumor enough to remove it. The plan right now is four cycles given every four weeks. So if all goes as planned, surgery will be performed at the beginning of June. Surgery would then be followed by more chemotherapy to kill any young cells and radiation if necessary.
So. . . questions most asked:
Is Sebastian in pain? Discomfort is probably a better way to describe his condition. His first cycle of chemo has already reduced the size of the tumor so he feels less pressure in that area. He clearly does not like to be messed with by doctors and nurses so he cries a lot when they are around. When he is at home, he is the same smiling, playful and cuddly boy he has always been.
How "successful" is this treatment? This type of tumor is almost always shrunk by chemotherapy. The problem lies with cells that become resistant to chemo and the cancer comes back. The most radical forms of treatment include radiation for cells that can not be removed surgically and bone marrow transplant for cancer that has spread. Many children have not survived neuroblastoma despite all of this treatment. At this point, we only know that Sebastian has stage III neuroblastoma (of four stages) and that his tumor has already begun to shrink. It is still too soon for the doctors to determine any long term prognosis, however, we have placed our trust and our faith in God to heal Sebastian.
Has the cancer spread in Sebastian? At this point what we know is that it has NOT spread to his bone marrow, bones or other areas that are not around the tumor. What we don't know is whether it has spread to his liver or diaphragm. That will not be known until surgery is performed.
How is the rest of our family? We are being carried by God right now so we are doing quite well. We have our moments of confusion, sadness and frustration but overall, there is peace and comfort that can only be attributed to God and the people He has placed in our path to take care of our daily needs. Our family, our church family and our friends have been standing in line to help and we are overwhelmed with gratitude. The update on the kids: Michele: Steve Sr's 23 yr old daughter that we just met lives in New Hampshire is getting married on March 27th. We talk to her weekly, pray for her daily and can't wait to see her again. Steve Jr.: He recently began working his first job at the Whitey's Ice Cream plant in Moline. He is still working on making 100 free throws in a row and El Nino has helped him practice through the winter. Steve is going to South Dakota this summer for mission work with the youth group at church. Stephanie: She continu es to try to break the world's record for the number of activities that a ten year old can be involved in. Church choir, school choir, youth group, band, soccer, girl scouts and mini theater are her current involvements. Sam: He loves his new baby brother almost as much as he loves the adventure of all of the activities that he has been involved in with the different brave people that have volunteered to take him during our trips to Iowa City. Spencer: He has been great through all of this so far. He smiles all of the time and it is not gas! He is incredibly cute and can't wait to meet everyone. Steve, Sr.: He continues to spend most of his time working two jobs. Both places have been wonderfully cooperative and supportive during this situation. Surprisingly he has grown more hair during this ordeal but it is all on his upper lip. Tracy: I have been relying heavily upon the help of people that have come into our home. I have learned to gi ve shots, draw blood and read lab results. Maybe it will come in handy if I ever get that role as an extra in ER.
What do we need?/What can you do to help? PRAY!!! We are feeling the prayers already lifted up and will continue to need more. Pray for response to treatment, pray that his blood counts recover quickly, pray for his body to remain free of infection, pray for peace in our family, pray for the doctors who treat him and anything else that enters your mind. Even if you have never stepped foot inside a church or uttered anything to God before, please pray for Sebastian now.
We have also been encouraged by cards, notes, e-mail and letters to let us now that you are praying and thinking of us. Many of you have given us scriptural references that have helped you in your times of trouble and that has been very uplifting as well
Anyone that has spent any time in the hospital knows how much visitors are appreciated. I will try to make sure that the number to our hospital room is on our answering machine and that our contact people -Jean , First United Presbyterian Church (or my new personal secretary Lisa) and Cleo & Dolores have the number where we can be reached in Iowa City so if you want to visit, you can call first. We will be back there March 17 through 23 or 24.
Things of practical use that we have found that would be helpful are pre-paid calling cards for when we are in Iowa City and postage stamps to help keep everyone updated.
In closing, we want to extend our deepest thanks to all of the people that have been praying for us, providing food for us, picking up things at the store, coming into our home to help us with our five children, listening to us vent about our victories and our struggles, running errands, passing information around and of course taking our children at moments notice when we go to Iowa City.
There is still so much ahead of us concerning Sebastian so I will continue to get these "newsletters" out to you. (In case anyone is wondering, I like doing this almost as much as I like talking, so it is no trouble!)
In His Love,
Steve Sr., Tracy, Michele, Steve Jr., Stephanie, Samuel, Sebastian & Spencer Dockery