Perpetually Wright: Hanging in There

We had a doctor appointment this last Monday. Kelby's check up went well because she's feeling great. However, all might not be well because her blood test showed a low white blood cell count. Apparently this doesn't show up in her appearance, but probably means there is something else going on. Her ANC (count of infection fighting white blood cells) is 858. Most normal kids are above 2000. Hers is down from 1200 just a month ago. She was this low during her radiation treatment (which I was worried about then, but the oncologist thought was just from the radiation), but went up to 1200 by the time treatment was over, so it's gone down for no apparent reason. Below 500 is when we worry about fevers and sicknesses. The doctor said, "It's not something to get too worried about." The plan is still to do scans and a bone marrow aspirate on August 24th. We won't know anything conclusive until then. It seems ominous to Michael and I. Something is probably affecting her bone marrow. Cancer could be in her bone marrow, it could be another spot starting in her bone somewhere, or it could be a secondary leukemia caused by her previous treatment.

The thing is that we don't know anything conclusively...and won't until after her scans, unless something else pops up that affects her behavior. This puts us in a strange place. It feels like things will turn worse sooner than later, but there is no way of knowing. How do you live then? How do you deal?

Mike has finally earned his first week of vacation, so it looks like we might make an escape even before those scans. We may even try to make it to Disneyland. We need to just take a break and really enjoy our little family for a week. There's no other place that you can do that quite as well as Disneyland...at least for this little family (Mike and I even went there for our honeymoon). We'll probably get some beach time on our way there and back. We hope to make it as relaxing as possible.

Other than that difficult news, the weeks before this have been packed full of fun. We've visited our church's pool two times now. (Can you believe that our church has a pool?) Kelby never wants to leave once we are there. We visited the Creek park too. The girls are so happy if we leave the house to do things like that. Otherwise they are playing in the kiddie pool in the backyard. The water fun never ends in our 85-90 degree weather. This past weekend we got a lot done around the house because we hosted a small BBQ for new friends from church. We still haven't gone camping this summer because we now have 3 kids (more stuff to pack and less room to pack it in the van.) We have to try it at least once this summer...we'll see.

Kelby got to enjoy a fun sleep over for her cousin Riley this week. The girls dressed up and put on makeup. It was adorable. Tegan didn't stay the night, so she really missed her sister. Since she's used to sharing a room, it was difficult for her to go to bed alone. She cried hysterically for 15 minutes at bedtime, "I want my Kelby, I don't want to be alone." Mike gave her some books to read and eventually she calmed down. It was difficult for Mike and I to see her like that. These two girls are best friends...how is Tegan going to handle it if things turn worse for Kelby?

Okay, this is a fairly negative update. I'm sorry...but if I didn't give you the truth and the fear...then you'd think I was a fake...handling things too well. Then you wouldn't believe me when I say, "We are still trusting her to God's hands." But even though sometimes it's hard, I still believe that God is going to use whatever happens for good. I know that we all are going to die some day. We can't any of us guarantee how long our life will be. All we can do is make the most of what we have. I was doing a bible study about a year ago that asked me to think about what I want most for my children's futures. My greatest hope for my kids...any of my kids...is that they would impact the world for Christ. I know that most of you would agree that Kelby's little life has already accomplished that. Her story has inspired, motivated, and encouraged many people...in their faith and in their lives. I would hope that her life has inspired others to do the most they can with whatever time they have. Faith isn't believing that I'll get whatever I want, whenever I want it. It is believing that our all-knowing, loving God loves us and our Kelby enough to take care of us through thick and thin. Life is not the end. Living isn't about this life, it is about eternity. All that said, I don't doubt that God could still choose to heal Kelby. He is powerful enough to do whatever is ultimately, eternally the best thing to do.

I'm trying not to be too sad, but there is a little grieving to be done...we grieve for the future we probably won't have. It is difficult...most people just want me to think positively. I do most of the time, but I have to also allow myself be sad and not feel guilty for being so negative. Tears are not bad. A book that someone found for our family that has been helpful for me is called Tear Soup by Schweibert & DeKlyen. It talks about the grief process like making a big pot of soup...everyone does it differently. If anyone is interested, I think you should read it. It is illustrated like a children's book...it is short, yet very touching. At the end it has tips for those making tear soup (grieving.) For more information on "Tear Soup" visit http://www.griefwatch.com/tearsoup/Default.htm

So as with every session of saddness, I eventually take you back to that happy place. The place when we realize that Kelby is one of the happiest, kindest, sweetest kids on the planet. She seems to feel great. We will enjoy the fun times and the boring times. Life is 10% what happens to you and 90% how you deal with it. This little girl is happy...then so am I!