PARTY TIME!

SOOO.... Carter still didn't make counts today to start maintenance, but we're not letting that stop us from having a party this weekend!  (His ANC needs to be 750 and it was only 500.  But all his other counts are up so I think he should be good to go when we go back in on Thursday.  Hopefully.)  So if you know me, or Carter, or my husband, YOU'RE INVITED!!!!  It's gonna be awesome.  5:00 this Saturday at our house.  Bring a side dish or appetizer to share and we'll provide the rest.  COME CELEBRATE WITH US!!!

And just an FYI, it will be a "Paul and the Dragon" themed party.  So come dressed as a dragon... just kidding.  But Carter will be squashing his dragon at the party just like Paul does in the movie.  If you don't know about the movie, click HERE to read about it.  And in case you didn't believe me the first time, let me tell you again:  IT'S GONNA BE AWESOME!!!

week delay

We went in on Monday and Carter's counts weren't quite high enough to start maintenance.  White blood cell count was 700 and ANC was 300 (it needs to be 750).  Hemoglobin 8.2 and platelets 278,000 (needs to be 75,000, so that one was no problem)  Oh well, we have another full week of no medicine.  The doctor told me that it's not uncommon at all to be delayed like this before maintenance.  Carter just came off of a really tough round with lots of chemo so his counts are just not there yet.  So we are enjoying our week of freedom before more drugs.

LAST CHEMO!!!! (before maintenance)

 Today was Carter's last chemo for this round!  Next round:  MAINTENANCE!!!  What does this mean?  Well, we have an appointment next week for the start of Maintenance and then our next appointment is in  A MONTH!  The next appointment after that?  Another MONTH later!  Then another MONTH before the next one!  I think you get the point.  What will we do with our time?  Not only that, but Carter's counts should stay good throughout.  His counts today are better than last week, but not by a lot.  White blood cell count 700, ANC 300.  Hemoglobin 7.8 and platelets 325 (much higher than last week!)  Other than the once a month IV chemo in the clinic, he will still be on oral chemo at home every day, and steroids for 5 days every month until April 13, 2014.  But I'll tell you more about maintenance next week.  After his chemo was done, we headed over to the inpatient unit with his Chemo Pal to check out Chelsea's Closet.

 This time, he got to be an alligator!  So cute.

With his Chemo Pal.  

I haven't been able to stop smiling all day long.  I just can't believe we made it to this point.  I am constantly amazed at Carter's maturity, strength, and bravery.  He is the most amazing 4 year-old I know.  I am so grateful and feel so blessed to be his Mommy.  I know we're not done, not even close, but the hardest part is now just a memory.  Don't you think this calls for a celebration?!?!  We do to :)  How about Labor Day weekend?  Be there or be square.  More details to come but if you're reading this, you're invited.

CBC

We went in this morning just to check counts.  His hemoglobin is down a little since Tue.  It was 7.6 and now it's 7.  The doctor thinks the numbers will start to come up on their own now and opted not to do another transfusion today.  We have an appointment already for Monday so if they are still lower then, he'll probably get more blood again.  White blood cell count is still the same at 600 and ANC is 300.  Platelets are double what they were Monday morning, a whoppin 63,000.  That's still low but not low enough for a transfusion.  So our clinic visit was short and sweet today.  The nurse didn't even put the big sticker over his port once she accessed it which made the de-access so much easier.  Carter slept on the way home and then for another 1/2 hour or so on the couch.  He seems to be doing just great now.  Only one more chemo for this round! 

Another over-nighter at the hospital

All through the weekend, Carter was getting more and more tired and pale, but not to the point where we thought it was urgent to take him in for a transfusion.  I was planning to take him in early Monday morning, before our scheduled appointment because I was pretty sure he would need blood.  Well, early Monday morning, at around 5am, he woke up and was acting weird.  His daddy got up with him first and came in a little while later and asked me to go see if I thought he was ok because he was getting worried about him.  When I went in there, Carter was speaking in sentences but some of the words he was saying were not real words.  He was getting really frustrated that I didn't know what he was saying.  He would get up and try to show me but even that didn't make sense.  We started to get really worried so quickly packed him up in the car and headed for the ER.  He screamed and yelled at me for the first ten minutes, demanding that I turn around and take him back home.  It was heartbreaking to listen to, but I was glad he was at least making sense and using real words.  I called his Oncologist to let him know we were coming so the ER was expecting us when we got there.  They took us right back.  While we were waiting for the results of his CBC, I was trying to see if he was speaking more clearly or not.  He was being very quiet and it was hard to get him to say much to me at all.  A few times he started telling me something and then just stopped mid-sentence.  I asked him to tell me his whole name and he just looked at me, a little confused and finally said, "you do it."  So I said his full name and asked him to repeat it.  It took a full minute for him to figure out how to say his first and middle name, and it wasn't pronounced correctly.  He didn't even attempt his last name.  These past 8 months have been full of scary moments but this one was REALLY scary.  We finally got his blood counts and his hemoglobin was extremely low at 3.6.  Last week it was at 7 which is right on the border of needing a transfusion.  It was now as low as it was when he was first diagnosed.  I could not believe it had dropped that low so quickly.  His platelets were also very low at 13,000.  They had him on IV fluids and then got his platelet transfusion done before taking us upstairs to be admitted.  Since his count was so low, his first red blood cell transfusion had to go in over 4 hours.  Yes, I said FIRST.  After that one was done, his hemoglobin was up to 4.4 - not good enough.  So over the night, he got another transfusion and it came up to 6.something (I can't remember exactly).  In the morning they started another transfusion and it came up to 7.7.  Finally.  Even after getting fluids in the ER he was acting a little better.  After the first transfusion he was doing pretty good.  When I got back to the hospital yesterday morning, his last transfusion had just completed and I could not believe the difference from the previous morning.  He's totally back to normal.  What a relief!  The doctors told us the reason he was acting so loopy was because of his low red cell count.  Since red blood cells carry oxygen, his brain was just not getting the oxygen it needed.  Especially how his numbers dropped so quickly, it can cause the altered mental state that we saw.  We'll go back in tomorrow to check counts and see if he needs more blood.
The silver lining in all this?  He still got his chemo yesterday so we're still on schedule.  But that's not the best part....  One that he was scheduled to get was PEG-Asparaginase (the leg shots).  I was going to wait till they did the shots Monday night before leaving to go home with the two younger kids.  The nurse, knowing I was waiting for that, came and told us that they were giving him that drug IV!!!!!!  I almost did a back flip right there in the hospital room.  No joke.  He ended up getting the his medicines Tuesday after all the transfusions were done then we headed home in the afternoon.  We're hopeful that this could be his last admission to the hospital.  Maintenance is just two weeks away and his counts should stay pretty consistent through-out.  So cross your fingers for him!

clinic 8/1

 

All last week, with the exception of the morning after the clinic visit when he vomited 5 times in a 2 hour period, Carter was doing great.  I was so impressed since last time he was on these medicines was when he was the sickest.  The Zofran (anti-nausea) really helps him a lot.  He refused to take it last time and since it wasn't a medically necessary medicine, I didn't force the issue.  This time though, with his now-mastered-skill of swallowing pills, he takes it 3 times a day no problem.  He's been full of energy and wanting to be in the pool all day everyday.  I knew his counts would be dropping because of all the chemo but I didn't that they had reached their low point yet since he seemed to be doing so well.  Well, Monday, the CBC revealed that they are, in fact, quite low.  White blood cell count 400, ANC 0, hemoglobin 7 (on the verge of needed another transfusion), and platelets 137,000.  He was not feeling well all day long.  He had a sedation at 2:00 in the afternoon so he couldn't eat for the majority of the day.  That doesn't help the nausea and makes it that much harder to actually get some food in his stomach after the sedation.  The threw up a few times while we were there, including right after waking up.  He wasn't interested in eating or drinking anything so they gave him some different nausea meds in addition to the Zofran he had already received.  I can't remember what it was called but it made him so silly and loopy!  It was hilarious.  The whole car ride home he was saying the craziest stuff that made absolutely no sense.  Once home, he couldn't walk in a straight line and kept bumping into the walls.  Luckily, it just made him laugh and say, "I keep crashing!"  Poor kid.

Last week and this week he's on the Cytarabine which is the one that I have to inject into his port at home for 3 days.  That means he has to stay accessed (have a tube coming out of the port in his chest) from Monday to Thursday.  He doesn't like it at all and walks like the Hunchback of Notre Dame.  It's quite sad to see, really.  But man, he is just such a trooper.  He doesn't let it get him down.  And you should've seen him when he got accessed yesterday!  He didn't even cry a little bit!  It was amazing and I continue to be so impressed with my little man.