January 23, 2014

I picked up Evan ad Mom at their house this morning to bring them to Health Park for his next round of Chemo.  Evan has come to accept that he must have more Chemo and now knows the difference between the drugs used.  He knows them by color and is aware that he will have to have another round of the really bad red stuff next week.  Today is the yellow one and it is not too bad (his words).  I am amazed at how he has taken this in stride.  Meghan and I discussed about how we were worried a year ago when he wouldn't talk much and even had him at a speech therapist.  Fast forward to this past month and we realize he didn't need the therapy at all because he has become a witty chatty Cathy and talks a blue streak!

As I got to work today I received a text from Meghan that the Doctors from Moffitt had called and requested that Evan have an X-Ray taken of his right arm with measuring devices so those X-Rays can be sent to the UK for analysis by the team that might build his prosthetic bone.  I say might because the Doctors and the UK team have never made an expandable prosthetic device small enough for a 4 year old so this is the way to determine if it can be done.  I certainly hope that we will have good news on this next week.

Please stop back occasionally as I will be posting updates to his progress today and any extra information on the X-Ray situation.

X-rays completed and Evan is receiving fluids so Chemo should  commence late afternoon or early evening.  ANC levels came back and they are 1250 so he can receive the Chemo with no issues.

It's 5:00 PM and I'm at the hospital. The chemo has not started yet as the X-ray took a little longer. The doctors here wants the best possible pictures to send to the UK.  One small concer to watch is his liver enzymes are elevated but not so much as to prevent this treatment.

The one picture is a sign I made for Evan based on an image created by Ben a longtime friend of Meghan.  The other is a pic of all the giraffes people have been sending.  Thank you all for thoughts, prayers and gifts!

Update: Friday 01/24/2014: Chemo started late last night.  The floor had an emergency admission so it delayed Evan's treatment by a bit.  His  Chemo ended about 3 AM and he is resting well.  The new anti-nausea medication seems to be working well.

The only item that has me a little concerned is the elevated liver enzymes.  I did a little internet detective work and it seems that people undergoing IV Methotrexate therapy (even high dose oral) will have elevated enzymes as must as 20 times higher than the upper end of normal levels.  Once therapy is discontinued, levels usually drop to normal.  Since he is 7 days out from first treatment, it is fairly normal to have really high enzyme levels and Evan is in the 17 times high normal right now.  It will bear watching by the MD and Nursing staff along with as Meghan and the nurses call me "DR. Bob".

For those who are following the blog and are not on Face Book, I am including a Video tribute that a friend of Meghan's made for us. His name is Benjamin LeBaron and the video is very special to us.  Hopefully as Evan's journey continues he can make more!

1:20 on Friday and Meghan is reporting to me that Evan's liver enzymes have come down dramatically.  His AST yesterday afternoon was 1155 and today it is in the 700!  Good job Evan.