Tuesday, July 26, 2011

3rd time's a charm

His counts were finally high enough to start more chemo!  Kinda bittersweet, but I'm glad we're finally getting it over with.  White blood cell count 2.1, ANC 900, hemoglobin 10.3 and platelets 231,000.  We spent the day in the clinic accompanied by our dear friend Lindsey.  Carter was really happy she came to play with him and read him stories all day.  Everything went really well even though he had a sedation at 4:00, which meant he couldn't eat anything the whole time we were there and could only drink water and juice for a couple hours.  He was surprisingly fine with it.  After he woke up from his sedation, he had already received all his medicine and he was not feeling very well.  BUT, he just had to play the monkey game one more time before we left to come home.  This morning he threw up about 5 times before he was finally able to keep down his anti-nausea medicine.  He's doing much better now.  Wish us luck!

Thursday, July 21, 2011

so close!

Carter's counts were not quite high enough to do chemo AGAIN today!  Bummer.  I'm sick of driving to and from the hospital anyways, but when it's for nothing... sheesh.  White blood cell count is 1300, ANC 600 (it needs to be 750).  Hemoglobin 8.3 and platelets 143.  Oh well, we'll try again next week.  We spent the afternoon seeing Cars 2 instead of at the hospital so I guess it's not all bad news.

Friday, July 15, 2011

take two

An hour after I posted the update yesterday, a nurse from the hospital called.  They had just received the "chemistry" results from Carter's blood work.  It measures things like protein and electrolyte levels, among other things.  Everything looked really low, like half of what it should be.  So either he was really sick or something had gone wrong with the tests.  She asked me to come back in and let them draw more blood and run it all again.  So, I loaded up the kids and back we went.  Carter was so amazing and brave having his port accessed twice in one day!  I was very impressed with him.  The CBC only takes a few minutes and the results looked good.  White blood cell count is 1700, ANC 300, hemoglobin 11.5 and platelets 287,000.  The results look a lot more accurate given his current energy levels and feeling good overall.  It's a bummer his ANC is so low but I was also a little relieved because he couldn't have started today even if the first test had been accurate.  They sent the other blood sample down to the lab for "urgent" results which took just over an hour.  While we waited, the boys played tag around the big square hallways through the clinic.  We were pretty much the only ones still there so they just ran wild.  The nurses kept saying, "Yeah, he's definitely not sick!"  We turned on a movie in the waiting room and ate graham crackers and peanut butter for dinner.  The results finally came back and everything looked totally normal.  Yea!!  So we headed home to start enjoying our extra week of no medicine. 

Thursday, July 14, 2011

change of plans

We went in today for our all-day visit to start the 2nd half of Delayed Intensification.  Carter was supposed to get 4 different medicines today, one of which requires him to be on IV fluids for hours before and after.  His ANC has to be at least 750 and platelets 75,000 to move forward.  Well, he wasn't even close, really.  The doctor and I were both shocked to see his counts so low.  White blood cell count is 900 with ANC of 200.  Hemoglobin is 6 and platelets 138,000.  His red blood cell count is just below the cut-off of needing a transfusion.  Since I'd told the doctor that his energy levels have been pretty good and he's been acting totally fine for almost a week now, we decided to skip the transfusion today in hopes that his marrow will recover quickly on it's own.  Carter's been fighting a cold or something for a few weeks now and the Dr. said that can sometimes cause counts to be a little lower.  He assured me that this is nothing to worry about and we just set up an appointment for next week.  There's a few good things from this.  First, he was scheduled for a sedation at 3:30 this afternoon which meant he couldn't eat anything after 9:30 this morning.  His appetite is still gigantic so I'm glad he didn't have to suffer through those long hours without food.  Hopefully next week's sedation will be earlier in the morning.  Also, we now have another week of him feeling good and getting better instead of going the other way.  The hardest thing for me is that they tell me to bring him back in if I think he needs a transfusion after all.  What am I, a doctor?  It's hard to have that responsibility be on me.  But we've made it this far, so I must be doing something right.  Anyways, he's sound asleep on the couch now, hopefully recovering as we speak :)

Friday, July 8, 2011

I hate steroids

I really do.  This past week has been the worst as far as steroid side effects.  He's gained almost 5 pounds, has been very moody, and hungry around the clock.  He doesn't get mad very often, usually just sad.  But when he's on steroids, he gets really mad.  He stomps his feet and makes this face:

This was at our clinic visit yesterday.  He went from very mad to super sad and then back to mad about 8 times during the 5 minute wait.  That's not an exaggeration, either.  He would start crying and want me to hold him because he was scared and the next minute he would stop crying, put on his angry face and punch me a couple times while demanding, "Take me home right now!"  And then back to the crying.  Luckily, the visit was just to check his counts to make sure he didn't need any transfusions so it was pretty quick.  His numbers were all ok, thank goodness.  White blood cell 3600 with ANC of 2800.  Hemoglobin is 12.4 and platelets 238,000.
But I think the worst part about him being on steroids is that he doesn't sleep well AT ALL!  And so he's always so tired.  Add being constantly hungry to the mix and you've got a very tired family.  Three nights ago, he ate a sandwich in the middle of the night - about 2am.  The next night it was a couple bowls of cereal.  And last night:
This picture was taken at about 1 in the morning.  Then he woke up again at 4am and came and told me that he was "super duper hungry" and wanted more nachos.  He'd woken up at least once (it's all kind of a blur) in between and told me that he was having a hard time sleeping.  Then the kicker is that he wakes up at about 5 or 5:30 for the day.  Poor kid is just exhausted.  And so are we.
His last dose of the steroids was yesterday morning so we're just waiting for it to clear out of his system so we can hopefully get some sleep around here!

Stupid steroids.

Tuesday, July 5, 2011

Wiped out

Carter is very exhausted.  This is pretty much what he looks like all the time now with about an hours worth of energy every day.  Poor guy.  His counts are probably even lower now, we'll have them checked again in a few days.

So a while ago I dropped one of Carter's pills and it must have rolled under the oven or something because I couldn't find it anywhere.  This left us one pill short to finish off the week.  I had to call the doctor today and have a prescription called in for ONE pill.  You should've seen the pharmacist when I picked it up.  He told me that he even called the doctor back to make sure it was really just for ONE pill.  Haha!  Oh, and one pill cost 5 bucks and some change!  I'll be more careful from now on.

Friday, July 1, 2011

clinic 6/30

He likes when I roll him up like a burrito

Our clinic visit was pretty good yesterday.  The port access went pretty well, not as well as last week but still much better than usual.  Maybe we've turned a corner?  The de-access was pretty good because I reminded him that we couldn't go see our friends's new baby until it was taken out.  He was pretty excited to see the baby and that cute little guy did not disappoint!  We were very glad that they were at the same hospital as us so we could go visit!  Anyway, Carter's counts have dropped pretty low over the last week.  White blood cell count is 1400 with ANC of 600.  Hemoglobin 12 and platelets 269,000.  Next week we have an appointment to check his counts again, but no chemo.  I can cancel it if I'm feeling good about how he's doing.  The doctor told me that the chances of him needed a transfusion next week are pretty low, but to bring him in if I'm at all concerned.  So we're all done with chemo for the first half on Delayed Intensification.  He's still on steroids for another week, though.  He's feeling pretty tired today.  He's already fallen asleep twice this morning and it's only 11:00.

At the time of diagnosis, the doctors gave us a 75% chance of curing the disease.  I asked the doctor yesterday when that number will increase.  At the start of maintenance, it will go up a little, maybe to 80% and then about every 6 months it will go up a little more.  She also told me that 50% of all reoccurances will happen before maintenance is over.  Also, she said that the more time that passes between diagnosis and a reoccurance, the easier it is to cure.  Not that I want to think about these things, but it's interesting information and some of it is good to know :)  She went on to tell me that so far, Carter is doing awesome.  He was a rapid early responder (went into remission after Induction), his counts recover pretty quickly after chemo, he tolerates the treatments well, hasn't had delays for low counts, hasn't had a lot of bad side effects, has stayed relatively healthy throughout, and has had good energy and happiness levels.  In her years and years of experience, these are all good signs.  She couldn't tell me that they mean anything solid, but just from what she's seen, they are good signs.  Hearing that made me very happy!