Day Twenty-Seven - Radiation Cancelled

Sorry there hasn't been an update in awhile. The last two days we have been down in Seattle at doctor appointments. On Wednesday we had the meeting with the Radiologist at the University of Washington. Throughout these last months we have been thoroughly dreading this part of Kelby's treatment because of the long term side effects she would likely suffer from it. We went into the meeting hoping that the doctors could talk us into doing it by showing us that the benefits outweighed the risk. They told us about the side effects to the radiation and they are very scary. They would irradiate the three places on Kelby where she first showed disease. These were the bed of the primary tumor of her adrenal gland, the top of her left femur, and her jaw. Side effects to the adrenal area would be risks to the kidneys and shortening of the spine. Radiation affects bone growth. They would have to irradiate both sides of her spine so that she wouldn't have a curvature in her spine and it would decrease her height by a centimeter or so. The radiation to her leg would also be growth inhibiting. Since it was only one side she would have a limp and it could affect her ability to play sports, etc. The radiation to her jaw was the most scary to us. They would have to irradiate a large portion of the left side of her face. According to what we have read, facial bones are especially affected by radiation. The distortion in her face as she grows would be significant because of her age. Her teeth and saliva glands would also be affected. All of these side effects are very likely, but the degree of severity is unknown. Also, she would have a 3-5% chance of getting a different kind of cancer in those spots 10 years down the road. There is all of this plus the short term side effects (similar to side effects of the chemotherapy) and 3 weeks of putting her under anesthesia every day. So knowing all of this, we really wanted to be sure that doing this to Kelby would be worth it. The radiologists that we talked to weren't able to tell us that this would give Kelby any significantly better chances. There haven't been studies as to the overall benefit of radiation in Kelby's situation. All the other treatment that Kelby has received has been shown to give her much better chances and that is why we did it despite the side effects. Currently the radiation is just a part of the protocol that Kelby is on. We even asked the radiologist to convince me to do this if it was the best thing for Kelby. He said that if he really thought that it would give substantial help to Kelby, he wouldn't give up in trying to convince us to do it, but he couldn't justify it. In this type of cancer the chances of relapse is quit high. From what the doctors have said and what we have read, the overwhelming problem is a systemic relapse. This means that the cancer comes back in places other than original sites anyways. So, still it was very hard to come to a decision. We have two branches to think of. One branch is radiation and one is no radiation. On either branch, there is both possiblities of life and of death. Also, on either branch there is a majority chance (statistically speaking) that she will relapse. They can't tell us that the radiation branch gives her any better chances of life, but it would for certain give her long term side effects and problems. On the other hand, if we take the no radiation branch, it is possible for Kelby to go on and live a basically normal life. So, we have decided not to go forward with the radiation part of this protocol. I can't go without saying that our faith plays a huge part in this decision. We know that Kelby is in God's hands. Whether she ultimately stays with us or goes with Him, we know that she will be well taken care of. Our biggest fear is not of her dying, but of her suffering. By doing the radiation we may, without any good reason, guarantee her a life of pain and reconstructive sugeries. Our decision gives her the chance to live as normal a life as possible, because there is a good chance that the chemo alone destroyed the cancer. We know some of you may disagree. We can respect that, as it was not an easy choice for us to arrive at either. We ask that you respect and support our decision as well, because I don't think anyone can truly evaluate these things unless it happens to their child. On that note I'd like to thank the staff at Group Health Eastside for not necessarily agreeing with our decision, but respecting us enough to agree to whole-heartedly support it. Throughout this we have been in 4 medical institutions, and as fancy as the others were, there is no place we trusted with our daughter's life more than you guys. We think you've done an excellent job at treating Kelby, not just the cancer, and always respecting us as her parents. Finally, this is obviously by no means over, so we would like all of you that have been praying to try to remember to continue doing so (By the way, for those of you who would have not made the same decision... there is more solid scientific evidence to support the use of prayer than there is to support the use of radiation on stage IV neuroblasoma). :) Kelby will start on Accutane (an oral medication), which has been proven to be a beneficial therapy. As soon as we can get a hold of it we'll give that to her at home daily along with the other drugs we're already giving her. Updates will keep coming, but probably not as frequently as in the past. Perhaps one or two times a week. Pictures and videos will keep coming as well for those who are interested. Hopefully before too long you'll get to see pictures of Kelby with hair! You all are the greatest and we don't think that Kelby would have done as well without your prayers. Thanks again for you continued prayer and support! Michael and Shawna