Wish Come True + Fever = Postponed Wish

2/24/2012: 4:40 PM

Davis' counts today weren't spectacular by any means. His red blood cells were 8.1 and platelets had dropped to 37. Since his numbers were trending down, the staff decided to transfuse both platelets and red blood cells. He was pre-medicated for his platelets before it was discovered that there were no exact platelet matches to be found in the Children's blood bank. Since Davis had such a severe allergic reaction to platelets, he may only receive his direct blood type. He received his chemo, his red blood cells, and we will head back down to Children's on Monday for his platelet transfusion.

We received his new roadmap (course of action) for the first phase of the Maintenance phase. Each phase will last approximately 58 days, and Davis will have about 11 phases. The first 58-day phase will consist of a couple of spinals and a bunch of oral chemo and steroids. I am asking - no, begging - for prayer now because I know how much Davis hates taking medicine. You would think that eight months of taking medication daily, he would be used to it. He still fights us nearly every day. The bright side is that we are inching our way to the end of cancer treatment, and we will be making fewer trips to St. Louis.

Other than for his transfusion on Monday, Davis' next visit to Children's (Lord willing) will be on March 9th. We are going to enjoy the break.

We ask that you pray for Davis' health and well-being while we are vacationing.

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2/24/2012: 10:30 PM

Ms. Keck and Ms. Green, our local Make-A-Wish representatives, dropped in with some fantastic bon voyage gifts for Davis (and Annakate). Boy, it was like Christmas! We also received our plans, which included some amazing activities (snorkeling, Pearl Harbor, etc). Some time ago, Davis wished to see Pearl Harbor (He has read a few books on it). His wish was granted and our trip to Hawaii was planned. Yay!! I haven't really mentioned it much because there are a lot of "what ifs" that surround the trip. Plus, if Davis isn't well, it would have to be cancelled, so I decided to mention it when it looked like it was a for sure thing. And now it is! I will be sure to take lots of pictures to share.

Ms. Keck and Ms. Green at our little Make-A-Wish celebration.
Thank you, Make-A-Wish!!

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2/27/2012: 10:26 AM

Late yesterday afternoon, Davis spiked a fever. We headed to the SBLHC ER to check it out, which is the routine. When we got there, Davis no longer had a fever. Great. That always happens. I am sure the doctors think I am crazy. It wasn't too long into our wait that Davis became flushed, so I asked the nurse to take his temperature again. Yep. 102.8. I'm not crazy. When Davis' bloodwork came back, I knew we were headed to Children's. His ANC (absolute neutrophil count (basically the immune system)) was 12 (healthy kids run between 2000-3000 or higher), platelets 11, and white blood cells were less than .4 (healthy kids range between 5 and 10).

Hanging out in the SBLHC ER

Even though he was pre-medicated with Benadryl, Davis still had an allergic
reaction to the antibiotic Vancomycin. It's called Red Man's Syndrome, and it's very common.

We had to wait on Stl Children's ICU ambulance transport because Davis was neutropenic. We were finally to Children's and settled into a room at 1:40 AM, and lights out came at 3:20 AM. It had taken eight hours of waiting and transport, which makes for a long evening.

transport team

Davis has been resting peacefully (a gift from the Benadryl given to him every six hours or so) since the ER visit. He hasn't eaten anything since yesterday afternoon. The docs are flushing him with fluids so dehydration is not a concern. He is being given powerful antibiotics via port every 6-8 hours. C-Diff is a concern, but the importance of the antibiotics trumps the potential C-Diff issue. As of now, Davis does not have fever, and there is not a known cause. Davis has virtually no other symptoms, so now it is a wait-and-see game. The doctors are starting to do their rounds, so I am sure I will know more later. All I know as of know is that his counts are still trending downwards. His white blood cells are now 0.1, platelets 3, neutrophils 0, ANC 0.

My guess is that we will be here for at least a couple . Typically the policy is that Davis has to be fever free for 48 hours and have an ANC trending upwards close to 500. We have the fever free part. Half way there.

Hawaii has been postponed. Dr. Schapiro, Davis' doctor, felt horrible and offered to go in his place while her colleagues took care of him here. (Everyone here has such a great sense of humor. Davis won the award for lowest platelets on the floor this morning.) She said it would be a sacrifice, but she likes us that much. Nah, she's terrific. Lauren, our wonderful Make-A-Wish coordinator, was completely understanding, and we will fulfill Davis' wish when he is well enough to go. He's disappointed, but spiking fevers are out of his control, and I am thankful that it happened now and not in Hawaii.

A picture of Davis right now.

We have a nice room with a great view of the park.

Please pray for Davis. He has a lot of anxiety and does not do well with hospital stays. Please pray specifically that this is not a port infection. Port infections are serious and his port would be removed. We thank you for your wonderful concern and support. I love that we never feel alone.

God bless you.

Keep you posted.