Still Confused and Frustrated

We don't know anything for certain yet, but we are scheduled to have a conference with the two oncology doctors, case manager and Scott and I on Friday morning and also scheduled to meet with the Radiation doctor on Friday morning as well. We are frustrated that we are getting a different treatment plan now than when we first consulted with the oncology department.

Until this week, we understood that at this point in the process we would be doing a second round of scans (which are in process) and based upon these scans a determination would be made about Surgery and/or Radiation. Further understanding was that if part or all of the tumor could be removed by Surgery it would be and if it couldn't ALL be removed THEN we would need Radiation for the remaining portion.

While the news of the tumor being "gone" is absolutely fabulous, it is so overshadowed by the devastating news of needing Radiation.

On a different note, Addison (some friends' daughter) had open heart surgery today (at the same hospital where we are) and that went very well. Addison (who is around 6 years old, I'm not quite sure her exact age) was awake and talking and trying to sit up this afternoon. She has had a hole in her heart since she was born and the surgeon was going to take care of that as well as a couple of other things. Mom (Jessica) explained it to us, but I can't remember the exact details. I talked with Grandma and Grandpa for a little while this afternoon and Scott talked with Mom this evening. All seemed to be going very well. Please keep Addison and her parents (Jon and Jessica) in your prayers, too. She'll be in the Pediatric Intensive Care Unit for a day or so and then in one of the pediatric wards for another few days.

Back to our saga... The doctor we originally consulted with has left the clinic (to move back home and into a bigger clinic). The doctors have always shared patients, so we have worked with the remaining two doctors, but they were not involved in the initial conversations.

The doctor who is working with us this week, while we're in the hospital, explained to us yesterday that the tumor is "gone" and there is nothing to surgically remove, but we still need radiation. This was (and still is) quite a shock to us. He has indicated that with the type of cancer that Rebekah has, Radiation should be considered reqiuired. It is not at all what we understood, so we are reeling from the news. We're trying to understand the reasons why and having difficulty getting sufficient answers. We will probably have to wait until Friday to get our questions answered. Meanwhile we stew about it.

The more we learn about Radiation, the more it scares us. This is why we wanted to avoid it. Here are some of the ways that it would affect Rebekah. Be warned, I'm going to be specific. We've always been pretty open about what's happening and this is simnply more of that. Radiation kills any cells that it hits - good and bad.

Because Rebekah's tumor was on only one side of her jaw, they would only Radiate that one side. Therefore, one side of her jaw will continue to grow normally and the other side won't. Because of her age and the amount of growing she has left to do, she would need at least one surgery (if not more) to artificially lengthen her jaw on the left side.

The gland that creates saliva would be destroyed, so the teeth cleaning that saliva does naturally wouldn't be done and extremely good dental hygiene will be required.

Her adult teeth might never come in.

The muscles in her jaw could tighten and make it difficult to open her jaw, making it difficult to eat (and presumably speak). Therefore she might need a feeding tube, either thru her nose or surgically inserted into her stomach. She could need therapy to assist her with exercising the muscle and getting it to function better for her.

In order to give her Radiation, they will need to sedate her and strap her down to keep her from moving at all using a mask that will need to be created for her. It is anticipated to be a month of Radiation appointments every Monday thru Friday, so that is a whole lot of anesthesias as well as a lot of travel.

Many of these are life-long issues and really scary for the parents of a 3 and a half year old. Please pray that we are able to have a good meeting with the doctors on Friday and get our questions answered adequately. I don't know what all to ask for in prayer - doctor's wisdom, our own understanding, the decisions that need to be made, for Scott and I to have peace about our decisions, etc...