Sunday, May 29, 2011

Back home soon

 So he's not home yet, but will be very soon.  Right after the medicine was done infusing his level was at 51.  6 hours later it was down to 1.09 and this is when the rescue medicine is started.  The next level draw was down to .43 and this morning it was .07 which means HOME!!  There were a few hiccups along the way this time.  Very small things, but I'll share anyways since I know you're all at the edge of your seats.  Yesterday, one of the Child Life Specialists came to talk with Carter about his port getting accessed.  The event of this happening every time we go to the hospital hasn't gotten much better.  There's been a few times when it wasn't as bad but then it's always followed by the next time being horrific.  This time was one of those horrific ones.  So she thought she might be able to help him by giving him the opportunity to access a port on a doll all by himself.  I thought it was a good idea and probably couldn't make things much worse but had potential to improve the situation a lot.  She brought her puppet doll in and Carter started getting nervous.  She took out all the little supplies and was showing him and talking about it all.  She asked him if he wanted to put the needle in and he didn't want to.  So she went ahead and cleaned and got it all ready, all the while having a little conversation with her puppet.  Carter got up and slowly backed away from her and ended up on the opposite side of the room where he sat down on the bench and curled into a ball.  I went over and held him on my lap and tried talking to him.  He finally told me that he was scared for the doll but mostly he just didn't like that the doll was "talking".  It made him very nervous.  So she got out a couple littler dolls that are just plain white cotton and gave him and Jude markers to color on faces and clothes.  Then she put a little "tubey" into the little dolls chest and Carter had fun pretending to give it medicine and draw blood.  So the whole thing ended ok, despite the bad start.  He now has his own little doctor bag and doll to take care of.

 Last night, the nurse couldn't draw blood from his port.  It has been very slow in the past.  She was finally able to get enough to check his Methotrexate level but not any more to do their routine checks.  She put some TPA in again but it didn't seem to help.  This morning, it just started working again.  Weird.  I don't know, I'm just glad it's working now so they could check his level and it's good enough to come home!

We also didn't have a car at the beginning of this admission.  Thanks to some amazing friends, we were still able to get there on time.  Our car is back up and running and hopefully won't give us anymore issues anytime soon.  Perfect timing, huh?!

I often see signs on patients doors that inspire and uplift.  I really liked this one.  My favorite signs are the ones that say "LAST CHEMO!!!"  I get so excited for those little fighters and want to run in their rooms and give them a big hug.

Carter has been doing awesome.  He has had so much energy and is just full of life.  The nurses and doctors are all very impressed with his energy level.  We are so proud of him and never cease to be amazed by him.

And I have to say THANK YOU again for all the help.  The cleaning, the meals, the borrowed car, the good friends with listening ears, and everything else.  We are so grateful to have such wonderful friends and family.  Thank you, thank you!! 


  1. We are so glad things went well over the weekend Robin. It's hard to see those you love most go through difficult things, we are SO proud of all of you, especially Carter. This post made me cry thinking of his tender heart and the courage he shows so consistently. And I love the sign, I am going to put it on my refrigerator. Remember that we love you!

  2. We love you so much! Tell Carter he's a superstar and we're so proud of how strong and brave he is. And Robin, your strength is inspiring.

  3. We love you and are praying for you and sweet little Carter. What an amazing inspiration he is to all of us. So glad you can all be home together. Way to go Carter! You are a fighter!