Wednesday, January 26, 2011

Dex Days

Week one of the new cycle started a day early due to the snow storm!  Sammy went to the clinic today and the new doses of meds began.  Already we see the effects: dark red circles under his eyes enhanced by his whiter than usual skin; pain in the gastro tract, irritability, and that bloody awful "steroidy" feeling again. 

Sam has been having bad nightmares every night.  We tried Mr. Tweedle (the family elf, who has written several letters and promised to stay in his room every night, snuggled up to Sammy as he sleeps). Then came the 'magic light bulb - don't ask!  Next we had the Mummy Snuggles with 'happy thoughts' before drifting off.  Finally, we had Dr. Leslie, the Psychologist talk with him today.  He still went to sleep in fear of the dreams ahead, although our snuggle-talk did yield the idea of the thing chasing him being the chef from his favorite Hibachi restaurant so Sammy could just turn around and eat all the delicious food he had!  Hey, I'll try anything right now. 

Pain seems to come more quickly of late.  Sammy is on slightly higher doses of Dexamethasone (Dex), the steroids.  This is due to his increased weight...he is getting a little chunky, but I will take that over the skeletal bald guy any day.  Tonight he had to 'go' to the toilet and he asked me to be there for him as it hurt so much.  My brave little soldier remembered to breathe like a Lamaze instructor and we eventually got through the process.  He was wrung out and exhausted and asked to go straight to bed.  Little events can really take their toll. 

There is also the issue of a major increase in the mercaptopurine.  The goal during the maintenance phase is to get the ANC between 500 and 1500 for peek cancer zapping power.  Sammy, as previous posts have mentioned, has had counts which were much higher than this, and I have asked about it several times.  I fully expected the 6MP (mercaptopurine) to go up this cycle and noticed it had changed to an increase from 50mg to 75mg for six out of the fourteen days .  Last cycle he only increased to 75mg for two days.  I would have been okay with that except his ANC today was 1628...not far off the target zone.  If he had managed to get that close on just two days with an increased dose, what on earth will six days do?  Will he suddenly bottom out and hit the dreaded neutropenia again?  With the rash of stomach viruses in school right now, that could be dangerous and most likely put him back in the hospital. 

Once again my agony over not being able to be at the clinic due to work was unbearable.  I get so angry about having to rely on second hand information when we are dealing with substances which can kill.  I always check everything once I get the information (prescriptions, dose schedule etc.) and I then need to be able to ask questions.  Thankfully Dr. C is very quick to respond to my emails; he just contacted me about my questions:
Hi Dr. C,

Sorry to bother you at home again...not being able to be at the clinic means I am often left with questions. Sammy's 6mp was increased this cycle as I expected, but I also noticed his ANC was down to 1628 which
is one of the lowest it has been, so I am thinking the extra 50mg last cycle must have had quite an effect. As a result, I'm a little concerned that the increase to 75mg 6 days out of the cycle is going to really kick his ANC below 500...or close to it. I am sure the large increase has been carefully calculated, but I just want to check in as we have had mix-ups before, and I would rather be over cautious than mess with chemo! Also, Sammy has had tremors and stiffness back in his legs over the last cycle....the message I was passed along was that it is not known what might be causing you have any thoughts? Finally, Sammy actually brought up the fact he was going to have an ultrasound for his urinary tract infection but no one else has mentioned this. Given Sam's amazing ability to keep account of everything, I just want to see if that was something he should have, or if it was just mentioned but then decided against.

Thank you for your patience and help,

Dr. C responded:

I'm not worried about the ANC of 1628. As long as it doesn't go much lower for long periods, that's definitely in the range I like to see. You and I will keep a close eye on the trend, week to week, and adjust if necessary. In the meantime, I'll recalculate the dose tomorrow when I have his numbers in front of me. Tomorrow morning, I'll get back to you on that and the other two questions. I imagine you'll be home enjoying a snow day ...

Unfortunately, we will not be having a snow day tomorrow...our school district rarely does, just a delay, but I look forward to hearing the answers to my questions and remain utterly thankful that we have Dr. C watching over the whole proceedings.  I just so wish I was there in the first place.  (I'm having Deja vu!)

Okay, I'm off to bed...just got to give the dose of poison, um I mean 6mp, before I hit the hay.  Maybe I can put some happy thoughts into Sammy's head to ward off the nightmares as he drinks it in his sleep? 


  1. I hope last night passed in peaceful sleep with sweet dreams. Sending some prayers and good thoughts your way.

  2. Thank so much, Galen. I have one cranky boy on my hands but at least the snow day gave me a chance to be with him though it.

  3. Hang in there Katy! My heart goes out to you all....especially little Sammy.

  4. Lisa, thanks for the support - it really helps. We will be okay...these days pass and I get my Sammy back. xxx

  5. Sweet dreams to sammy, and all of you as I know this is taxing on not just Sammy. The stress surely gets to you and causes lack of sleep. Many blessings and praying all is well in this next cycle. You are amazing! I need to get you the stuff I promosed in the mail. I'll try on Monday. In the meantime, lots of hugs, Shannon

  6. Sleep is a luxury but that's life anyway...I was never a good sleeper! I can't wait for the stuff...I am still trying to get my promise done for you...technical issue are hindering the process. Take care Shannon. xxx

  7. Thank you for your comment on my blog. I admire your strength, I can just feel it beeming out of these posts. I must say you are incredible, and your boy is so special! That's my first impression :) I will keep reading :)

  8. So glad to have you visit, Bz. And thank you very much for you lovely words.

  9. Hi Katy- wanted to say thanks for the "tough love". Much appreciated and I thank you for caring enough to give me encouragement the other day. Have a wonderful week. xo, Shannon


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