Perpetually Wright: It Came Back

You can't imagine how badly I do not want to be writing this entry. With this entry, I announce the worst possible news. We found out yesterday that Kelby's cancer is back. For the last three weeks, I had been looking into the face this beautiful 2 ½ year old daughter, convincing myself that I see and feel a cancer returning to her sweet, innocent body. She still smiles and says happy things. She has been growing ever more healthy in the past ten months since her last major medical procedure, yet the fear was returning. As her mommy, I have been consistently concerned with the possibility that her cancer may come back. All along I have been feeling her little jaw where they first discovered cancer. It was always pleasantly surprising when I felt nothing. Recently however, I started to wonder each time...is that something I feel? I didn't say anything because I didn't want to be paranoid. After a couple weeks, I decided that I really did feel something and I finally told Michael. He had me make an appointment with our doctor at Group Health in Redmond. Since Michael could feel it too, I knew that it really was there and and I feared the worst. That anxiousness that you don’t even want to put into words lurked deep at the pit of my stomach. “No”, stay there! I don’t want to deal with this pain, this fear, this sadness again. Is it true, is it really returning? What can I do about it? Nothing. Yet the feelings are real. The fear is real.

Details: We went down to our appointment on Tuesday. The doctor felt Kelby's jaw, but at first he wasn't that concerned. He thought maybe it was bone remodeling because he didn't feel a soft tissue tumor in there. He had thought it was soft in the beginning, but he hadn't seen her until after her biopsy had been done and she was all swollen and sore. He was more concerned after I explained that the original tumor started out as a hard mass that grew and grew and that what we feel right now had grown in just about three weeks. He scheduled some scans for us the next day and answered a few of my questions about options. I broke down into tears when I explained that I just wanted time to take her to see "big" Pooh and Mickey Mouse. The social worker started working on getting us in touch with "Make A Wish" right away.

The scans were yesterday. After looking at the results of the CT and bone scans, Dr. Louie came back and confirmed that it was indeed back. They will be doing a biopsy soon just to be positive, but there just isn't anything else this could be. So we have decisions to make. The doctor went over the options. We asked if there had been any survivors of Neuroblastoma that had relasped and the doctors at both Group Health and Children's haven't had any so far. That is even with treatment of chemotherapy, radiation, or alternative methods. There are experimental trials going on, but they require you to live somewhere else during the treatment and don't guarantee any hope. We are concerned most with her quality of life. If she isn't going to make it, we want her to be as happy as long as possible. The only option that appealed to us was doing local radiation to the tumor in her jaw. The goal in doing this would be to inhibit the growth there to hopefully give us more time. Radiation has the least amount of short-term side effects. So, we going to go ahead with radiation. Tomorrow I will be taking Kelby down to the University of Washington to consult with the Radiologist. He is leaving for two weeks after that, so we had to get in right away. They'll get Kelby all set up to do radiation treatments.

The "Make A Wish" volunteers contacted and visited us yesterday at the hospital to get going on Kelby's wish. I explained that I had shown her a picture not too long ago of Mommy and Daddy with Pooh from our honeymoon and she said, "I wanna go visit "big" Pooh sometime!" She said it all by herself and that is why we want to take her there so badly. I just want to be able to take her when she so strong and healthy. So before we do any other procedures, we will be going to Disneyland. In fact we are leaving this coming Sunday. Now we just need to get ready to go.

After our trip, we'll probably jump right in to procedures. She'll have to have a fine needle biopsy to just confirm what they already believe. This will be going through the outside of her check with a needle to aspirate a little bit of tumor to test. After that we'll get started on the radiation treatments. These will be daily trips down to Seattle for a couple weeks. We'll know more about the plan after tomorrow. Once the radiation is done, we'll just have to hope and pray for each new day and be thankful for each one.

These days, I have seen my fear turn into defiance in me. This will not be a worthless toil. If this scary monster called cancer should return to our home, it will not come without a fight…a battle of wits. It will not tear down my faith, my marriage, my home. We will make our Lord victorious in our lives by declaring His triumph over our Kelby whether she live or die. We will make a difference in people’s lives…as many as we can. She cannot leave this world without changing hearts and minds to face in the direction of the Lord Jesus that she’ll go to visit. I do not fear her death. I pray that this might turn us running full speed towards our God with as many people trailing behind us. God deserves every glory. He is so much bigger than anything that might burden us down here on earth.

One important thing that we want to tell everyone is that we need everyone to remain happy in Kelby's presence. We do not want her to be afraid. The only reason to be sad is that we will miss her very much. She gets to go to heaven and we don't want her to be afraid of that! We will all have to leave the room sometimes to cry.

Thank you for continuing to pray for our family. We need strength and we need more time. We still believe that God can do great miracles too, so maybe He has that in store for us! We are staying pretty strong though we have ups and downs. This will likely be a rollercoaster.