Wow! What a Weekend!

Davis and Wade

11/1/2011:  12:55 PM

Friday . . . . Halloween Party!  Davis was thrilled that he didn't have chemo scheduled on Friday. This allowed him to go to school and celebrate Halloween with his class.  He had a blast.  The students changed into their costumes, walked around the Charleston square, and then celebrated with Halloween games and a movie.  By the time early dismissal hit at 1:00 PM, he was wiped out. Friday night was dedicated to rest and the World Series game. The kids were both in bed before 9:00 PM, and I fell asleep during a commercial break at the bottom of the seventh inning. I can't tell if that is a sign that I am getting old or if it is a sign that I am really tired.  My mind has convinced me to think that latter.

Wade "mummyfying" Davis

On Friday, Davis had a CBC (blood work) and a CMP (complete metabolic panel) done. We had expected his counts to drop because of the chemo he had the previous week.  Naturally, I was surprised and concerned when I was told that his white blood cell count was over 4 (healthy kids are between 5-10, and Davis usually hovers in the 1-2 range), and his ANC (immune system)  was over 4000 (healthy kids are over 1500).  The clinic had no concerns. It was their stand that he was very healthy, and we were encouraged to enjoy the rise in counts. Kyle reminded me that the huge count jump had happened before  -- right before Davis had developed an infection.

Saturday . . . The kids and I were able to attend part of the Tri-County play-off match up with Arcola. Since Davis has limited energy, we took along a walker that has a built-in bench. He can walk with the walker if he needs it, but he prefers that he sits on the bench while we push him around. The bench seat also allowed for him to sit along the fence line to watch the game, if that is what you would call it.  He did more eating and visiting than he did game watching. Davis spent every bit of energy he had and was ready to leave during the third quarter, so we cheered the boys on listening to the radio on the ride home. Despite the sad loss, the Titans had an amazing season, and we were proud to cheer them on this year.

a doctor and a gypsy-pirate

Saturday afternoon was nap time.  Saturday evening brought a bit of trick-or-treating. We only made it to two houses, but the kids didn't mind. Davis doesn't eat candy, and Annakate doesn't eat much. The kids always enjoy going to the Ashmore Community Center for a little contest, so we did that. We were home by 8:30 PM, and both kids were worn out.

Sunday started with our normal routine, but after church, Davis was extremely nauseous. He slept most of the afternoon away. I checked on him periodically and noticed that he was running a bit warm.  Yep. He had fever.  The fever was low-grade, and he was under blankets, so I didn't stress over it. There is a rule for fevers for kids with cancer. You are to call to Children's if the child has a fever of 100.4 or so for more than a couple of hours. If the fever hits 101.4 just one time, you are to call to Children's. Kids with cancer run the risk of a port or line infection, which can cause sepsis (blood poisoning). Cultures have to be grown to rule this out. There is bigger risk of problems if the child is neutrapenic (has an ANC below 500), because the child can't fight infection off by him/herself. Annaakate and I attended evening church, while Kyle stayed home with Davis. Near 8:00 PM, Davis' fever climbed up to 101.8.  That warranted a call to Children's. The protocol after that is to head to Sarah Bush - the local ER - where a CBC is taken and a culture is started.  Sarah Bush is in close contact with Children's and together they create the plan. The CBC on Sunday night proved an even higher ANC than Friday. This means that Davis's body is healthy enough to fight infection assuming it is not a port/blood infection. He was treated with a bag of fluids to ward off dehydration and a broad spectrum antibiotic.  Davis and I made it back home at 1:50 AM.

Monday . . . Davis and I headed down to St. Louis for a morning chemo appointment.  We were both exhausted. I didn't have the luxury of sleeping, so I hit scan on the radio and enjoyed the views.  Many might go crazy fishing through radio stations, but I enjoy it. I heard "Thriller" (parts of it anyway) 13 times, which tied with Adele's song, "Someone Like You". I counted 11 dead deer, 2 dead coyotes, and 2 unidentifiable creatures. The trees and the fields are growing bare, and it seems that the road construction continues to flourish.

Annakate trying her
hand at being a
ventriloquist

We were only in clinic for about an hour. Of course, he had no fever during the visit, and no one seemed concerned about it assuming whatever the cause was treated by the antibiotics and behind us.  He weighed 55 pounds still.  The bright side is that he hasn't lost weight this last week, but the dark, depressing side is that he hasn't gained any either. Davis slept the entire way home, and I fell into my pattern of listening and watching all the way home.

When we were finally home, Davis watched some TV, Annakate worked on her homework and chores, and I took an hour-long nap. A much needed nap. I told the kids that an uninterrupted nap would be the best birthday present from them (Oh yeah, did I mention that yesterday was my birthday?  It was perfect, but not in the traditional sense.) I think they thought that the nap was a win-win, so they let me sleep.  It was a good thing I did, because Davis' fever spiked again. By Children's Hospital doctor's orders, we headed back to Sarah Bush for more blood work, cultures, and antibiotics. They were swamped, and that is putting it mildly. We arrived a little after 7:00 PM, and made it home at midnight. Since his ANC was so high and the cultures didn't show anything growing, Davis avoided another transfer to St. Louis.  Yay!

Davis and I slept in today. The morning was spent eating and working on homework.  He is trying to get and stay caught up with school work.  We both hate that feeling of having something hanging over our heads.  He was planning on going to school at noon today but was overcome with exhaustion and fell asleep working on science homework around 11:30.  I didn't have the heart to wake him up.  I think that we will rest and catch up today, and he can head back to school tomorrow.  His fevers tend to surface at night, so we will see how tonight goes.

Fevers . . . Fevers indicate infections. This is where it becomes frustrating as a parent. I want to know what causes the fever. And often with healthy children, we know because our children develop symptoms or are teething, etc. But with a child with Leukemia, the simple truth is that more times than not, there are not explanations. We don't know how Davis developed Leukemia, we don't know what caused his illness and week-long hospital stay a couple of weeks ago, and we don't know what is causing the fever now. The unknowns are scary.  It takes a leap to rely on the doctors and adopt the if-they're-not-worried-I'm-not-worried mentality, because the bottom line is that it is not their baby. They haven't invested their hopes, dreams, prayers, hours of worry and concern, and tiring efforts into this little life. It takes a trust that I have never known to rely on my faith, and that whatever it is - illness, fever, virus, bacterial infection - God knows, and he will take care of it. And I guess what adds to the frustration is that Kyle and I have always been problem-solvers, fixers, doers, and when Davis is sick, we don't know how to fix it, and there is nothing we can do to make it go away or to take away any of these experiences for him. However, each day brings added blessings, and this journey continues to change us for the better. 

Davis will have his next chemo treatment ten days from now. It will be a two-day treatment with the horrible Peg shots coming on the second day.  Please pray for his mental and physical strength. These shots are extremely painful, and it seems that the pain is worse each time because of his loss of leg muscle and increase chemo dosage. We are going to enjoy the spacing in chemo to lead normal lives. This weekend, we saw glimpses of our old normal life (going to the game, school parties, etc), and it was almost like an affirmation that this cancer experience will be behind us soon. Affirmation, not wishful thinking.

We have seen the power of prayer. Davis is doing so well with a great ANC despite having some kind of infection somewhere. His mouth sores are practically gone. He has an appetite, and he has even had a little hair growth.  Yes, despite receiving the hair-loss causing chemo every ten days, Davis still has hair!  We thank you all for your support.  We couldn't imagine trying to do this without your positive thoughts, concerns, and prayers.

Oh, I nearly forgot. The Times-Courier/Journal Gazette, our area newspaper, ran a very nice story on the efforts put forth by the Oakland and Jefferson schools to support Davis. Kudos to Rob Stroud. Special thanks to the schools, the students, and the communities that make Davis feel so welcome and loved.  I am attaching the link; just click on it to view.

School communities come together to support child's leukemia fight

We will keep you posted.