2nd time around

So we're back in the hospital for the second time getting the High Dose Methotrexate.  Everything is going well so far.  Yesterday morning in the clinic, the nurse was trying to draw blood from his port (best port access yet!)  and it was going really slow, as usual.  She decided to put some TPA in there, which is an enzyme that will break up any clots or protein build-up or whatever else.  Once she puts it in, it has to sit for an hour.  I was kinda bummed about the time delay since the sooner we start the medicine, the sooner we finish and can go home.  But the TPA really worked well!  I hope it lasts so that all future blood draws won't take 10-20 minutes instead of the typical 10 seconds.  Anyhow, we got to the clinic at 10:00am and didn't start the medicine until 6:00pm, so as I'm writing this, he will be done with the Methotrexate in 15 minutes.  In other good news, the lockdown has been lifted so Jude can come see us in the room!  And in still more good news, Carter's weight is up a few pounds from last week and his counts are looking really good.  White blood cells 3,000 with ANC of 1900!  Hemoglobin 8.5 and platelets 270,000.  They shouldn't go down much, if at all, for the next month and a half.  So aside from being in the hospital every two weeks, this round is shaping up to be pretty good.

taking medicine

There's been a breakthrough at our house!  Carter learned how to swallow his pills!  I used to crush them and mix it with chocolate syrup, applesauce, raspberry syrup, etc.  Medicine time every night is not nearly as painful as it used to be.  We're all very happy about this new skill :)  What makes it even better is that Carter will be on the "yucky medicine" (steroids) again in a few months and now he can just swallow it quick.  I know they have gel caps, I'm just hoping they have them in a small enough dose for him.

Here's a video of him taking his medicine last night.  He always has to do a practice before he does it for real :)  Just about the cutest thing ever.

Happy Easter!

What a fantastic day and week!  It's been exactly one week since Carter came home from the hospital last time and we don't have to go back for another 4 days!  It has been so great just being home and enjoying time together.  It feels so.... normal.  Normal, being a relative term of course.  The little man has been doing awesome.  He's been genuinely happy.  It's amazing to see.

 I know this is supposed to just be a blog about Carter and his fight against Leukemia, but I can't let the emotions of this Easter day go by without sharing.  After all, facing a life-threatening illness in my child and my faith go hand in hand.  Today, I am overwhelmed with gratitude.  Gratitude in knowing that the end of this life is not really the end.  Gratitude for my Savior and all he went through to make it possible to be with my family forever.  I can't imagine my family going through this without this knowledge.  Thank you all for your love and prayers and kindness and generosity.  We can't thank you enough!  Happy Easter! 

Home Sweet Home

(If eating with salad tongs is what it takes to get him to eat, then so be it!  He calls it his "handy tool")

Carter got to come home this morning!!!  He did so awesome in the hospital the whole time.  Yesterday, before they started the "rescue medicine", his toxicity level was at 88, which they say is perfect.  In order to be discharged from the hospital it has to be below .1.  After the first dose of "rescue medicine", it was down to .2!  After the second dose it was .11 - so close!  That was yesterday afternoon.  Then the test this morning is was down to .05!!!  So it was less than 72 hours from the time they started the medicine to the time he got to leave.  I was expecting him to be on the faster side, because he's so awesome, but wow.  Lets hope the next 3 times go just as quickly.  And we don't have to go back to the hospital for 11 days!

Round 3

 Thursday Carter started his 3rd round of Chemo:  "Interim Maintenance".  This is exciting for a couple reasons.  First of all, our 3-year timer begins now.  So mark you calendars, folks!  April 14, 2014 Carter will be DONE!!!  Secondly, he only has one more round after this (which will be pretty intense, but we won't think about that yet) before we get to "Maintenance"  which lasts for what remains of the 3 years.  At that point, the chemo isn't too crazy so he'll feel good., his hair will grow back and he'll start school and everything.  He's doing it!  We're getting closer to Maintenance!!  So, back to this round.  So far, it's going really well.  It's not as scary as I thought it would be.  It's a bummer that he has to be in the hospital every two weeks but it's not too bad.  It started Thursday morning with a sedation and lumbar puncture with Intrathecal Methotrexate injected into his spinal fluid.  6 hours after that, the High Dose Methotrexate begins and is infused over a 24 hour period.  That first night he wasn't feeling great but still not too bad.  Check out that gigantic bag of poison, I mean chemo hanging from his IV pole.  Usually his bags of chemo are really small and even that seems like a lot to me.  This is just ridiculous.  I can't believe that whole bag just went into my son's veins.

 Since he's not sick like last week, he's not in isolation.  He can leave his room whenever he wants and now that the chemo is done he can even leave the unit so he can see his brother!  They were both very excited to see each other out in the hall yesterday.

And he got to go to the play room and do arts and crafts.  One of the volunteers there made him this dinosaur out of clay.  He loved it and started to "cook" food for him and then feed it to him with a fork :)

 

 His chemo pal came to play with him yesterday afternoon.  And Grandma also came to be with him and even spent the night in the hospital with him.  I think he had a pretty good day yesterday.  The nurse is guessing that we'll get to leave Monday morning.

 Along with the  Methotrexate, he's also getting two other drugs, both of which he's had before.  Vincristine and Mercaptopurine.  The "rescue medicine" should start sometime today.  So far so good :)

Paul and the Dragon

We got this this cute movie in the mail from the American Childhood Cancer Organization called "Paul and the Dragon".  It took me almost a month before I let Carter watch it.  I'm not sure why.  Now, I wish I'd shown it to him a lot sooner.  It's about a little boy, Paul, who finds out he has cancer.  The doctor, in an effort to explain the situation to this young boy, tells him that the cancer inside of him is like a dragon.  So Paul imagines himself inside his own body and fights his "dragon" with the help of his special medicine and chemotherapy.  It's so cute and well done.  The first time we watched it, we didn't tell Carter anything about it beforehand.  All the things that Paul was going through (being in the hospital a lot, getting shots, being sick, getting special medicine), Carter would say, "that's just like me!"  He was so excited to see someone else going through similar things.  Ever since then, he carries his sword around and pretends to fight dragons.  And when we were in the hospital last week he kept telling us that he was fighting his dragon and when his dragon was dead, then we could go home.  What a smart little boy!  "Paul and the Dragon" is the new favorite movie around this house.

He got to come home!

 Our stay at the hospital is finally over.  Whew, that was a long one, the longest yet.  8 nights and almost 9 days.  It wouldn't have been so bad if we hadn't heard every day, "Maybe you can leave tomorrow."  Tomorrow would come, and we were still there.  It was very frustrating.  It was so hard to see how being in the hospital, stuck in that small room, not getting out of bed the entire time, being woken up several times a night was better for him than being at home.  But I'm no Oncologist, so there he stayed.  They wanted his ANC to be at or close to 500 before they would discharge him.  Today is was 494!  The entire stay, his chest was hurting him where his port is.  It was really sad to watch him slump over all they time from pain.  It took us a while to talk him into letting the nurse de-access him today so we could go home.  He cried for a while after wards but now he's just happy as can be and not complaining of any pain.  And he's walking!  He hasn't walked for 8 days now!!  I'm glad he remembers how :)  All I can say is, it's so amazingly nice to be home with my whole family again!  And having Grandma here is a sweet bonus.

Ahhh, it's a wonderful day :)

Next round will start next Thursday.