Monday, March 23, 2009

The Daily Routine

Forester, Pete, Whitney, Slade, Muzzy & Pop spent about 8 hours at the hospital today. What a long day! Although Forester was understandably nervous in the morning, he was such a trooper! Over and over again, his courage amazes me. What a brave boy he is! Per Whitney, Forester's headache pre-chemotherapy was definitely the worst part of the day at the hospital. More on the headaches later... They waited around a lot today, but Pete brought his laptop with him and was able to work while waiting.

The daily routine for the 5 days per week 6 weeks of treatment will look something like this:
  • First, Forester will have blood drawn via his port after he arrives at the hospital at 8:30am everyday to verify that his platelet count, WBC, RBC, etc are within normal limits. They should receive results in about an hour. He will receive IV fluids while waiting. Thankfully, the nurses left a line in his port today, so they won't have to poke him again this week. Whitney & Forester joked about silly names for the line. :o)
  • Once they receive normal blood work results, this "approval letter" will be used to order Forester's chemotherapy drugs from the pharmacy. Mondays are especially busy days for the pharmacy since so many patients receive chemotherapy on Mondays. We hope this means Forester will not have to wait so long for his drugs on other days.
  • Forester will receive both Vincristine and Carboplatin on Mondays but just Carboplatin Tuesdays through Fridays. Hopefully, this will also reduce the amount of time spent in the hospital those days.
  • After he receives the chemotherapy drug(s) via his port, he will receive another bag of IV fluids. The nurses will then flush out his port, give him Heparin, and send him down for radiation therapy. Because today was Monday, because it was Forester's 1st day of treatment, because of his headache, etc, he missed his 1pm radiology appointment, and there was confusion between the chemotherapy clinic and radiology. He had radiation therapy and then returned to the chemotherapy clinic to have his port flushed today.
  • Before radiation therapy actually began today, the doctors had to make sure Forester's mask fit properly. This meant he was in radiology for 1 hour versus hopefully just 30 minutes per day from here on out. For radiation therapy, Forester is strapped to a table and into his mask and is then left alone in a very noisy room. Whitney said it almost sounds like you're inside an air conditioning unit. The mask is so tight that Forester cannot open his eyes, his eyelashes poke through the mask, and he has a waffle-like pattern on his face once the mask is removed. Can you imagine??? Anyway, today he was completely calm about the whole thing. The nurses/doctors can see Forester via cameras and communicate with him via microphones and speakers, which is good.
  • Because of the way Carboplatin and radiation therapy work so well together, Forester must have radiation therapy within 1 to 2 hours of receiving Carboplatin. So... Hopefully, this will seriously reduce the amount of time he waits between the 2.
  • Whitney just found out today that Forester can listen to CDs while receiving radiation. When she asked the nurse if she had any children's music, the nurse pulled out a children's worship CD. The volume must be very loud to compete with the other noise, so every time someone opened the door, worship music blared down the hospital hall. :o) Forester told her he'd like to listen to stories during treatment, so she's hoping to borrow Adventures in Odyssey (from Focus on the Family) from a friend. If you have any other ideas/suggestions, please let us know.
  • Pete & Whitney can give Forester Zofran every 8 hours and Atarax every 4-6 hours as needed to treat the nausea he's experienced recently as well as to control nausea caused by his treatments. As I mentioned in my last post, though, he's afraid to take it. :o(
  • A nurse mentioned to them today that children usually experience some relief from fatigue and nausea by the 2nd week of treatment.

Forester did not see a neurologist today about his headaches but will hopefully do so tomorrow. A neurologist friend, however, said it sounds as if Forester is experiencing classic lumbar puncture headaches, which can last up to 3 weeks. It makes Whitney (and me) mad that no one involved in Forester's care has even mentioned such a thing! Please continue to pray for answers re: his headaches and for relief for our sweet boy.

Also, please pray that all medical personnel involved in Forester's care COMMUNICATE clearly and effectively and compassionately with the Bradburns. There has been an obvious lack of communication in some areas, and it is frustrating and potentially problematic.

Thank you all! Keep lifting those prayers!


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