Wednesday, April 20, 2005 - a big day and the diagnosis.

I know this post is going to change multiple times as I try and re-write it to be more concise, but for now, here goes:

We were up at 2am this morning. Sarah woke Rebekah, or was it vice-versa? Either way neither of them let the other get back to sleep until 4:00 am when we had to get up to leave at 4:45am. At 5:15am we picked up a VERY good friend Pat Johnson (thanks Pat and Steve) who spent the whole day with us. At 6:00am we were at Providence Portland hospital for the PET scan.

The PET scan went very well, anesthesia, recovery and all, and we were packing up ready to leave there at about 11:00am. We were off to Emanuel Hospital to meet more doctors.

We first met the doctor who will be putting in the central line tomorrow, Thursday. We then had a quick lunch (Grandma Carolyn was able to join us!) and to meet with the oncology team as nearly all of the test results were back.

Let me first say that she has cancer, it has matastisized throughout the head and neck (though not to the rest of the body as was determined earlier) and surgery is not an option to remove it.

The diagnosis is officially Ewings Sarcoma - a bone cancer although we have learned that a bone cancer can also live (grow in?) soft tissue as well and this has. The planned course of treatment is extensive chemotherapy on a 3 week cycle (although we may enroll in a trial group that is investigating 2 week cycles) where chemo is administered every third week. When being administered she will be hospital bound for 3-5 days depending on which drugs are being given. Then we will be home for two weeks (1 week if we get in the trial) and back for more. Any complications, infections, sicknesses, etc. will find us in the hospital during the off week(s).

This will continue for 12 weeks and surgery will be scheduled. The HOPE AND PRAYER is that the tumor will then have shrunken enough to do surgery. This is not by any means guaranteed and using the word "likely" is probably too strong. WE NEED PRAYER FOR A MIRACLE HERE PLEASE.


I won't mislead you with figures and percentages as statistics don't mean anything when its your little girl - she is the only one that matters and not the other 99/100 people.

This type of cancer is rare in small children. The very active oncology group that we are in saw one case "similar" a "few years ago". They are part of a larger consortium but it is still very rare. They are, however, very familiar with this type of cancer which is supposed to behave quite similar across the board without regard to location or age of patient.

At this point we are scheduled to be admitted to the hospital tomorrow and have surgery again to put in the central line and harvest bone marrow. They will then keep her for 24 hours to establish base line (pre-chemo) levels for heart, kidney and other organ functions. We should be able to go home over the weekend and will have to return again on Monday for chemo to start. Then we will be on the cycle I talked about above.

The final thing we had to do today was talk about money with the social worker. Wow. We are privately paying for insurance right now and that plus the deductibles and copays are going to be horrendous. Frances is not able to work hardly at all. Please pray that God provides a way for me to be with Rebekah and and the same time for my practice to pick up in a way I can handle it in order to support this.

Again, I am sorry this is rambling and I will make some changes later, but for right now this is what we know and my brain is not working totally straight.

Go home, hug your own kids a little extra longer, and be thankful for a beautiful day. And please, keep praying...