August 1998

Dear Family & Friends,

Well, my head is just spinning from all that has been going on and all of the information that is trying to be processed in such a short amount of time (and some people might add that it is a short amount of space in between my ears too!)

Medical Update

We are spending the first half of the month of August doing baseline tests on Sebastian to make sure that we will be able to tell if the chemo associated with the transplant is damaging any of his functions. So far, his kidneys have been the only organs to sustain any injury and the doctors report that it isn't very much and will return to normal within a year after transplant.

After learning more about what is all involved with the transplant, we realize that we need to prepare ourselves (and all of you) for a long and difficult road. There has not been a specific date chosen for him to be admitted to the hospital but here are the anticipated dates:

August 25-August 28 Radiation Twice per Day

August 29-August 30 Home

August 31-Sep 4 Continuous Chemo

Sep 4-Sep 7 IV Fluids-(Rest)

Sep 8 Transplant Given

Sep 9-Sep 29 Waiting for Engraftment

Sep 30-Oct 30 Hospitalized Recovery

Oct 31-Nov 30 More Hospital Recovery

if needed or Outpatient

So, as you can see, this spans about three months. He will be admitted to the Pediatric Bone Marrow Transplant Unit (located on the seventh floor of Roy Carver East 7RCE) at the University of Iowa Hospitals and Clinics. On this unit, there are special air filters to keep Sebastian and his environment as free from germs as possible, decreasing the risk of infection. He will have to comply with certain regimens of diet and personal hygiene to insure the best chances of a successful transplant.

During the "waiting for engraftment" (engraftment means that his bone marrow has started growing on its own) period, Sebastian could possibly be very sick with infections, fevers, mouth sores, diarrhea, and skin rashes. He may need very intensive medical care. It is during this time that he will be at the greatest risk. (Ten percent of children undergoing this procedure don't make it through all of the complications). Bone marrow aspirations, blood counts and other tests will be done frequently to monitor his progress. He will also be given medications to help with any of the previously mentioned side effects.

Why are we doing a bone marrow transplant if the cancer has not spread into his bone marrow?

Sebastian has an aggressive form of neuroblastoma, which puts him at a greater risk of relapse. A study that was just published in March of 1998 showed those sending kids to transplant before relapse produces a higher rate of "Event Free Survival"-EFS. (I guess they don't use the word remission anymore.) The way the transplant works is by giving incredibly large doses of chemo to kill the cancer cells and then rescuing his blood cells by giving him back his own bone marrow to grow new blood cells quicker. Chemotherapy kills cells that grow fast. Cancer cells, hair cells, the cells that line your mouth and digestive tract and blood cells all grow fast. Without the transplant, much smaller doses of chemo would be required for his blood cells to be able to rebound on their own.

What are the alternatives? 1) Treatment with chemo in lower doses would still result in some side effects but not as severe. Utilizing a less aggressive approach gives the cancer cells a chance to build up resistance to treatment and the cancer would likely come back. 2) I have also heard of some families that have tried some nutritional therapies after relapse with some success, however, I have not read any empirical studies to support this treatment. 3) Doing nothing most likely leads to death in a few months.

If I am so sure that God is going to heal Sebastian, why are we going through such invasive and intense treatment? Okay, so no one really asked me this question but it has to have crossed some of your minds-and to be honest, it has certainly crossed mine. To us-(yes US-we actually discussed this topic TOGETHER) the answer is that this treatment and everything associated with it is God's work. We have placed Sebastian into His hands and trust that His will be done.

Have you ever received a gift from someone, smiled pleasantly and then put it in a box for a yard sale because you thought that it was something that a) you didn't like because you would have never bought for yourself, b) would never use or c) it didn't fit and you really couldn't see how it ever would? Then, when the years have passed and you actually start pricing all of the stuff you have boxed up, and you come across that gift again. You realize that getting rid of something in perfect condition without really trying it out is such a shame so you take it back into the house and read it, try it on or use it. It seems strange because it is something new but not awkward because it has become a part of you as you move it from the basement to the attic to the garage. So you keep using it more and more until one day you wonder how you ever lived your life without it.

All through my life, people have tried to give me these gifts of God's love, mercy, grace, hope, forgiveness and faith. I smiled pleasantly and put them in a box. I moved them around for many years before I actually accepted them as gifts. Now, I can't imagine life without them. I didn't do anything to earn them. I didn't ask for them. I can't do anything to make them go away. All I had to do was accept them. God has given me this gift of faith. The faith that He will heal Sebastian on this earth, in our lifetime for His glory.

On August 30, we are having a party for Sebastian that we hope will serve a variety of purposes. One would be to see Sebastian's smiling face before he goes into the hospital for the next couple of months and another would be to give you the opportunity to see if there is something that you can do to help us by looking at the "master list" of things that we think we will be needing during this difficult time. For those of you who are interested in helping but will not be able to come to the party or who live out of the area, please call the church and leave your name and phone number with the secretary and Lisa or Kathy will call you back.

I hope to continue to be able to get these "newsletters" out to you throughout the coming months, however, his condition will probably change on a daily basis. We are planning on putting daily messages about how he is doing on an answering machine in his room. Feel free to call his room and just listen to the message or leave a message for us. You can call and ask to be connected to Sebastian Dockery's room.

Thank you, again, for all that you do!

The Dockery's