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 it...do 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,
 Katy


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? 

Strength

Good day at the clinic because Sam was not screaming about eating...it is the steroids...I can't wait until they are done. Radiation was quick, the anesthesiologist was anxious to get back into the room so I assume there was a moment of Sam not breathing, but all was well (I'm calm about it as not breathing is a minor bump these days)!!! At home Sam asked for a nap and was very shaky...radiation is taking its toll. Vincristine is also causing major weakness and pain...but Sam is really handling it well. He did start singing along to a song, "I hate being sick"...and cried a little in bed with me. I think Sam, Brian and I take it in turns to loose it...really! One of us cries and the other two are amazingly strong...lucky :)

Tomorrow Brian will take Sam to the clinic for blood work, and then he goes for radiation and the LP. Sam is terrified of having the port taken out. I told him I would put the numbing cream over the accessed port so he doesn't feel it as much. I am not sure he is fully convinced, but it might work.

Sam has talked a great deal about the length of his illness. He now understands that his port will be in for about two years..."I'll be seven when it comes out!" He is getting a little exasperated about having to go to the clinic so much, he has been every day this week and will do the same next week. Thankfully he is a very clever little guy and tells the nurses and doctors, Dr. Singer (the head of the ICU) included, that he is feeling so bad because of the medicine, not the leukemia, as he doesn't have that anymore.

Sam talks in terms of months and years now. "Will I be able to have my birthday out of the hospital?" or "Can I play golf again?" or "Will I still have to visit the clinic next year and if so, how can I go to Florida?" The hardest is,"If I don't have leukemia anymore, why do I have to keep taking the medicine?" Tonight I finally told him it was to make sure the cancer doesn't come back. He took it calmly, with acceptance. He is the strongest person I have ever met.