No More Ara-C! Yay!

2/14/2012:  12:20 PM

Happy Valentine's Day!

Warning . . . This may be a long one. I just feel like I am doing a little bit of catch up.

Kyle did an amazing job while I took to some warmer weather for a little R and R. The cruise was wonderful. Kim and I managed to get plenty of physical activity. One day, we kayaked the mangrove estuary where the Gulf and Atlantic Ocean meet. Another day, we rock climbed, repelled, zip lined, and snorkeled (what a workout!). That last time Kim and I were in Florida together was seventeen years ago, so the get-away was nice, and the homecoming was even better.

Super Bowl Party. We ate and left. We didn't watch any of the game.
I'm partial to the Titans, the Tri-County Titans, that is. :)

Rock climbing and repelling. Boy, was it hot!

Friday ended up being a very long day for Davis and Kyle. The family went down on Thursday night and stayed in a hotel because Davis had to be in clinic early. He was scheduled to receive chemo via port and chemo via spinal, but it was also determined that he needed a unit of platelets and two units of packed red blood cells. The blood transfusion added an additional four hours to the day alone. Because of the time crunch, Kathy, our clinic nurse, actually came down with Davis' Ara-C chemo and administered it in his port while he was still under anesthesia after his spinal in recovery.

I had mentioned a couple of updates ago that Annakate had developed a swollen lymph node on her neck and that we were doing a "watch and wait" with her after taking her to the pediatrician. Because of the concern, she was given an examination by Davis' pediatric oncologist. The oncologist agrees with Annakate's pediatrician that there is nothing for which to be alarmed. What a sigh of relief.

My mother and step-father drove down to St. Louis and looked after Annakate while Davis was in clinic. They spent the weekend watching the kids while we attended our church's couples marriage retreat. It wasn't ideal for us to bring our kids along on a marriage retreat, but with Kyle administering
the four-day Ara-C chemo, it was the only way to make it work. My mom and step-dad were going to take the kids home on Saturday so that Davis could be ready for his 5th grade band concert that evening, but Davis wasn't feeling up to par. We thought it best to keep the kids with us.

marriage retreat

It was a good we did.  Saturday night, the Ara-C chemo froze in the refrigerator. Refrigerator malfunction. Kyle called Davis' doctor who happened to be on call, and she had to order two new doses. (Frozen chemo = ruined chemo). The pharmaceutical company had to make it, and we arranged to pick it up at Children's around noon. We have to watch the time, because there is a window of time that the chemo has to be administered. It has to be administered around the same time everyday. Between the frozen chemo and our arrival at Children's, Davis developed a low grade fever. The doctor directed us to the ER, where a CBC would determine Davis' ANC. If his ANC was below 500, Davis would be admitted and transferred to the 9th floor. If it was above 500, Davis would be given a broad spectrum antibiotic and sent home. Five hours later, we knew his ANC was 675. Seven hours in the ER, we were finally given discharge papers.

Kyle is doing a saline flush before he discovers the chemo is
frozen.

The Ara-C causes fever; however, there is really never any good way to know if the fever is being caused by Ara-C, a viral or bacterial infection, or a line (port) infection, so the doctors always cautiously treat any fever.

Poor Annakate. Can you imagine a healthy, rambunctious eight-year-old sitting in a hospital ER for seven hours and then sitting in the car for another three?  How boring.  She makes me so proud. She did such a good job hanging out and complaining very little.

Annakate is making the best of the all-day SLCH ER trip.

Both Kyle and the ER nurse struggled putting fluids into the port. It was difficult to push the syringe. This issue, the impending snow, and Davis' low grade fever concluded with another drive to St. Louis yesterday (Monday). Our clinic nurse, Kathy, discovered that it was difficult to push the meds. She gave the needle and little wiggle. Problem solved. Apparently, the needle had lodged against the side of the Davis' port wall restricting the flow of fluids. Davis received his very last dose of Ara-C in clinic. We were informed that Ara-C is not on the maintenance roadmap. This is just one more step that makes maintenance more of a reality.

Last Ara-C!  How can you not smile?

Davis is still running a low-grade fever. We are monitoring it closely. Cultures taken Sunday and yesterday in lab have not grown any infections. His ANC on Sunday was 675, and yesterday it was 1115. Wow. The climbing ANC nearly guarantees that Davis won't need to stay in the hospital to wait out the fever. Despite on-and-off fever and a horrible headache (both side effects of Ara-C), Davis is off to school today. He was feeling a bit overwhelmed about falling behind, and he didn't want to miss the Valentine's party.

Davis will have another CBC on Thursday. His counts are being monitored closely because the combination of Ara-C and methotrexate can cause him to be neutropenic (ANC

We have this Friday and next Friday, and then we will have completed the delayed intensification phase (road map). Wahoo!  Yay!!  We will have a short break, and then Davis will start the long and steady maintenance road map  that will run 2 1/2 years. Treatments will cut back from once a week to once or twice a month. Although he will still be at risk for infection because the port is staying in, he will be able to live a more normal life (if there is such a thing anymore). 

Radio Interview

This morning, I had a chance to partake in a radio interview to promote an upcoming St. Louis area Easter egg hunt sponsored by the Gateway chapter of LLS (Leukemia and Lymphoma Society) and several other organizations. The interview was to inform people about the statistics and signs of blood cancers (Leukemia, Lymphomas, Myelomas). The panel consisted of the the deejay; Debbie Kersting, the executive director of LLS; Dr. Huang, the pediatric hematology/oncology department director; and myself sharing information about our family's journey. If you are an early riser and wish to listen to the thirty minute talk show, feel free to stream it on your computer. Here is the information I was provided.

The interview was with radio personality Kristi Carson. The program will run at the following times:
KHITS 96 on Sunday, March 4 @ 5 am
KSHE 95 on Sunday, February 26 @ 6 am
The Point 106.7 on Sunday, March 11 @ 5 am
KFTK 97.1 on Sunday, March 18 @ 5 am

All radio stations are out of the St. Louis area.

We thank you all for your love and support. We count our blessings each and every day. We continue to pray for Davis health and that soon the worst of the treatments will be behind us. We do not doubt the power of positive thought and God's healing touch. We don't have to look far or long to see how wonderful He is.

We will keep you posted.