Saturday, October 29, 2011

clinic 10/27

We went in for our monthly clinic visit on Thursday.  Carter's counts are looking good still:  White blood cell count 3000, ANC 2200, Hemoglobin 10.9 and platelets 324,000.  They want his ANC to stay between 750 and 1500 for the duration of his treatment.  If it's still higher than 1500 next visit they will probably increase his dose of oral meds to drop it down a bit more.  So that was all good but the rest of the visit was not so great.  His port access went great but the nurse couldn't get the port to work at all.  They often have trouble drawing blood from it so they end up putting heprin in to sit for about 10 minutes or they use TPA (which sits in there for about an hour) which breaks up any clots that might have formed around the end of the tubing in his vein.  But despite the blood drawing issue, they've always been able to flush it with saline.  Well this time she couldn't get even a drop of saline to push in.  We've never had this problem before.  Since we can't get anything in, there's really no tricks they can use to get it working.  She tried to get some TPA in using a "pressure method" but it didn't work.  They had to start an IV in his hand to draw blood and administer his chemo.  He was not happy about that.  It was awful. 

SOOOO..... Since the port is no longer working, Carter will have to have surgery to remove it.  And now we have to decide if we want another port placed or if we want to just do an IV every month.  There's benefits to both ways.  Not having a port means this would be his last surgery.  They also wouldn't get quite so excited about fevers since they are mostly worried about an infection from his central line.  Doing an IV each time and putting chemo through those smaller veins could do damage to them.  And he's so used to his port getting accessed that it's no big deal and our clinic visits are usually pretty easy.  I don't know how long it would take for him to get used to pokes in his hands.  But having another port put in scares me a lot.  I remember the last time when he had this one put it, it was terrible.  One of the hardest things he's been through.  The recovery from that was rough, he was so sore for a long time.  Not to mention he did get an infection and was hospitalized that night.  Ah, I just don't know.  

But look how far he's come!  This was in Feb when he was still chubby from a month of steroids:

Doesn't he look amazing now?  He just looks so much older and more mature.  And he definitely is more mature now.  He has certainly grown up a lot over these past 10 months.  He's really amazing.

Monday, October 24, 2011

Caring Cabin Weekend

 We had the amazing opportunity to spend 3 days at the Caring Cabin!  The Children's Cancer Association owns this awesome place and they let families of cancer-fighting kids go stay there free of charge.  It was so great.  This is what we found on the table when we first arrived.  A blanket for Carter made by some volunteers in Pacific City (where the cabin is), disposable camera to take pictures for CCA of our stay at the cabin, and two name stones - more on those later.  So here's a lot of pictures - enjoy :)  And notice Carter's hair is coming in nice a thick now.  I love it!

There was so many ladybugs in the house!  Carter had a blast catching them and carrying them around.

 We celebrated this little guy's birthday while we were there.

 We got him a super hero cape and mask because he LOVES everything super hero.  He didn't even want to put it on.  He just today, 3 days later, put it on for the first time.  Carter, on the other hand, has been wearing it around everywhere.

 The rec room.  The boys just wanted to stay and play with all the toys all day.

 The rec room is on the left.  The building in the front right is the "meditation room" and the main house is behind those two buildings.  It was absolutely beautiful.

 There's this little private lake on the property.  We spent some time in the row boat and canoe.

 View of the cabin from the lake.

 Entry hall

 This is the room the boys slept in.  There was a loft with two more beds.  They loved it.  A lot.

 View from the deck

 Most of our time was spent just relaxing and the boys played and played with all the toys and games there.

 We went to the Tillamook Cheese Factory and got some ice cream cones.

 We ran from the waves.

 The boys rode their bikes.

 So the rocks.  Every kid that goes to the cabin with his/her family gets one of these rocks with their name on it and year they visit the cabin.  Sometime during our stay we are supposed to pick a place along the path to the lake to put his stone.  The other stone is for us to take home with us.  Carter chose this spot because it's where he fell off his bike the first day.  Placing your rock can be symbolic of all the hard things you've been through.  We asked Carter what was the hardest thing he's had to do and we talked about some tough things he's been through.  He doesn't get very sad about it anymore when we talk about it.  He's become so brave.

 He threw his rock down right next to the path.

There were tons of name rocks all along the path.  Then there's this big cluster of them right near the lake.
  It was pretty humbling to see that many names, some of which we recognize from being in the hospital.

 Carrying an oar down to the lake.

 We saw bear tracks!  Yikes!

 They got a little tired walking back up the hill.

 After we left the cabin, we headed down to Newport to check out the aquarium.  Thanks to Candlelighters for Children with Cancer we got an awesome "behind the scenes experience".  We got to go see these harbor seals up close.  They even did some cool tricks for us.

 Like sticking out her tongue :)

 And giving me a kiss.

We also got to go to a big shark viewing window.  There were so many sharks and it was really awesome to just stand there and watch them swim around.  After that we went back out with the "commoners" (haha) and just walked around the aquarium and enjoyed the nice weather.

 Sting ray

 Have you ever seen a Super Dad?  I have.  I'm married to one.

It was a fantastic weekend.  We all thoroughly enjoyed ourselves and were sad to leave.  But we have another trip to look forward to in a couple weeks!  Carter goes back in for his monthly visit on Thursday - more updates to come.

Sunday, October 2, 2011

clinic 9/29

 (his hair is growing back so fast!)
Carter is doing great!  However, I had a bit of a nervous break-down the morning of his last clinic visit.  The night before he woke up complaining of leg pain.  That scared us a lot because that was a big complaint he had right before he was diagnosed.  The next morning his legs were still hurting him and he also said his head hurt and his stomach.  He was very grumpy and vomited on the way to the hospital.  He threw up again in the exam room.  His chemo pal was there and Carter hardly said a word and didn't even pretend to be interested in all the toys and games he brought.  He had a sedation so I was hoping that his grumpiness and feeling ill were due to no breakfast.  But I was totally freaking out, thinking the worst.  Despite having a rough day, Carter was still so brave for his port access.  He didn't say anything and later told me, "I was as still as a statue!"  Finally they took him to the procedure room and started the sedation medicine.  He started to vomit again as he was going to sleep.  SO SCARY!  I quickly left the room and said a little prayer and put my trust in the doctors.  A long 10 minutes later they came and got me and said he did just fine.  Right after he woke up he wanted his juice which he quickly drank and was then back to his normal happy self.  He has been totally fine ever since.  His numbers are good:  White blood cell count 13,400 and ANC 11,600.  Hemoglobin 10.4 and platelets 329,000.  His ANC is higher than expected and we figured out it's partly because I'VE BEEN GIVING HIM THE WRONG DOSE OF ONE OF HIS MEDICINES!!!  I've been giving him one pill once a week and he's supposed to get FIVE pills once a week!  I felt like a really bad mom.  Luckily it's only been 3 weeks.  The doctor was really nice about it, he just laughed and said, "So THAT'S why his numbers are so high!"  So, lesson learned:  Read the prescription labels and then read them again!  Other than that morning, he's been doing awesome.  Every now and then he'll say something like, "I'm so happy I squished my dragon!"  or "I'm so glad my dragon is gone.  He was eating all of my blood!  Good thing I squished him!".  He's amazing.  And we don't have to go back to the hospital for another month!

Oh, and we're going to DisneyWorld/Seaworld in November, courtesy of the Make-A-Wish Foundation!!!!!!!