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November 24, 2009

Last week I mentioned that I wanted to check the dosage on Isa’s doxorubicin. This week it is her Dexamethasone, (decadron) a steroid that all ALL parents know.

Today could have been an easy in and out, or really long. Instead we were there for a Medium amount of time.

First of all, my usual 30 minutes late put us there at 8:30, instead of 8:00.  The tech called us back and had us in the infusion room at 9:00.  You see, today the nurse practitioner had ordered both packed red blood cells, and platelets for Isa. Besides the blood products she also ordered benadryl and tylenol. Luckily Isa’s counts were high enough that she needed NONE of what was ordered for her.

Last night though, she had some back pain that woke her up and didn’t allow for her to sleep easily. When I mentioned this to the nurses, some fluid was ordered and Isa got a chance to get well hydrated.  We also got a good urine sample to check for any signs of infection in the bladder or kidneys. I got a call from the practitioner who said that the urinalysis looked good, but that we’d wait for the cultures to see if there was any need for an antibiotic. Of course there were leukocytes in her urine so there could be something there.

While Isa whiled away her time watching Caillou, with my occasional sniping, “Caillou is so whiney, he wouldn’t last a day in our house,” I organized and looked over Isa’s Beads of Hope. I’ve gotten terribly behind and quite waylaid with the whole thing. During this process of bead organizing, I used the protocol sheet where I track the dosages and such as a guide.  During this I noticed that the Dexamethasone dosage was 1.5 BID for the last round and 3 mg BID for this one. I asked the nurses to take a look at Isa’s BSA again. Indeed, the original dosages was WRONG.  We gave her too little the first time around. The NP looked up her chart and even called the pharmacy and such, and it was definitely a mistake.  It was an easy one to make, based on several factors.



BSA is the height X the weight using metric. Divided by 3600 then finding the square root.

For example,

  • Isa weighed 14.2 and is 95.5 centimeters tall.  14.2 X 95.5 =1356.1
  • 1356.1 ÷3600 = .3766944   then take the square root,√ .6137543
  • and rounding up, her BSA is .61.

Her protocol states that she receive Dexamethasone 5mg/m²/BID .   5 X .61 = 3 mg twice a day.

I recommend that you memorize this formula and carry the protocol with you each visit. The hospital staff tells you that the medication is checked three times. BUT it is only checked that it is the correct dosage after it has been calculated NOT the original calculations.  This is probably the third or fourth time I have had issues with dosage, this is a frequent problem. Please know your child’s BSA!  The NP apologized and decided that we will determine all future medications in person together, to avoid any more mishaps.  I used to have my husband to figure this math out for me. BUT between last week and this week I learned to do it myself. So I know that you can learn it too.

Before we left the oncology floor Isa started really screaming hysterically. She was running away from me and shouting that she wanted pizza and that her legs hurt. She was shaking she was so mad. And she seemed to be standing uneasily.

I grabbed her and went back to the desk to ask for her to be seen again. She is still screaming by the way. While I am holding her and trying to talk to the nurse about her legs she grabs me and scratches me. I start crying. Sometimes it is just too much to do all alone. Since the flu policy has been in effect I’ve been on my own at the hospital. Today, I had too much stuff to carry and just couldn’t handle another second of her screaming. I couldn’t make her stop. The screaming started out sort of cute and slightly funny, but when she shouted that her legs hurt and her little hands were shaking, I took her seriously.  Luckily I had two nurses, one to distract Isa and get her to walk while one was watching.  We all determined that she was walking okay. I suggested that she used the leg pain as a ploy to get me to carry her.

These drugs are so strange. After her temper tantrum I found a wagon to carry her to the front door, along with all the stuff I brought for the long transfusion day. She just sort of sat and stared ahead.  By the time we’d arrived at the car she started screaming again. Some might say, ‘Oh, you can’t get mad at her it is only the medicine.’ BUT  I told her she better stop screaming or there would be NO pizza, which is what started this screaming in the first place.

After the pizza, a two hour nap and a humongous poop, she was perfect. Couldn’t ask for a better child.  Super cute and playing. She made me an omelet with toast.  She didn’t have a toaster so she made it in the microwave. It was all delicous. (of course no eggs or toast were actually harmed in the making of this blog post. all were plastic)

3 Comments leave one →
  1. Natascha Howe permalink
    November 25, 2009 5:09 am

    Wow. What a day. You give mathematical equations and discuss how important these all are. Then in the next line its how she loses it at the doctor – after everything you all have been through – that’s a lot to carry with you… She’s still a little girl and yes she’s been forced to deal (as have all of you) with this awful disease – it’s ( i don’t know how to put this into words……) its been grating on all of you.

    I sit here in utter amazement how you all ‘handle’ this day in and day out. I don’t know if I would have the inner strength to do that. I wouldn’t wish what you are going through on anyone, but you do it with such grace….

  2. Quinn's mama permalink
    November 24, 2009 2:49 am

    Gee thanks DMM. i just spent my evening recalculating all of Quinn’s meds. The dosages were a little high on all of them. I know Isa is on the high risk protocol, is that why the dex 5mg/m2/BID? Ours in LTM is 3mg/m2/BID. Thanks for the math quiz. i forgot about square roots:)

    • November 24, 2009 10:24 am

      Now, the one thing I forgot to mention is that they have a 10% margin. If it changes up or down with a 10% range they won’t change it. She is still in Delayed Intensification and has the second half to go. BUT i just checked her LTM dosage and it is the same 3mg/m2/BID. If you want to really freak them out then you can start talking about Quinn’s BSA…. ha…

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