A lot has gone on since we arrived at the hospital from the surgery to the subsequent testing.  The entire time we have been in a constant form of free fall not knowing which way is up with continuous kicks to the gut around every corner.  Finally getting to the Oncology floor and starting a treatment plan as scary as that is seems a bit comforting as at least we know what the days to come look like for the most part.

Now that we are upstairs Audrey’s body still needs a few days of healing from the surgery and waiting for her antibiotics that she needs for one of the chemotherapy’s to kick in before we can start.  So it’s decided on Wednesday the 24th she will get treatment zero.  This is the first treatment that starts the clock and sets the pace for the next 54 to 80 weeks of treatment.  This is all depending on how her body handles the treatments and how effective the set plan is.   As said before this is a super rare case of Rhabdomyosarcoma so it’s not sure exactly how effective if at all it will be.  Time will tell.

While we are waiting for Audrey to heal the physical therapy nurse comes in and decides it’s time to get Audrey out of bed and see how much use of her legs she has post-surgery.  Remember when the doctor came out of surgery he told us he had no idea how much loss in function she would have.  We have seen her move her legs around a bit but she has been very sedated up to this point.  The physical therapist brought in a walker and said let’s see what she can do.  As Melissa has said (Mom) no one told her she might not be able

to walk.  She stepped up to that walker and started moving it slowly.  The physical therapist decided to make it a challenge with a reward.  She setup the toy cart down the hall and told Audrey if she could walk to it she could pick out a toy.   It took a lot of effort for her but once she got started you could see it was all working it’s self out.  I (Dad) couldn’t believe my eyes.  For some reason this has been one of my biggest fears and I knew if she could conquer this she could beat anything.  She made it to the toy cart and back that day.  The next day she didn’t need the walker and just started walking around like nothing ever happened.  Simply put it was miraculous.  We have had nothing but bad news for almost 2 weeks and the feeling and memory of seeing her walk will never leave me.

Audrey’s neurosurgeon came for a visit to check on her now that she has come off of all the meds and do an evaluation of function.  At this point he doesn’t yet know she has been up walking.  He is standing at the end of the bed and I ask him if he wants to see Audrey’s surprise for him today.  I pick her up and put her on the floor and say go see the doctor.  So she walks over and says hello.   The look on his face was priceless and you could see the joy in his heart.  Audrey has a way of inserting herself into the heart of people she meets and not letting go.  The doctor is no different and I think Audrey has become as close as family with her doctor at this point.

Well now that we are walking and riding around the tricycle that Audrey is now calling her motorcycle it’s time to get that chemo started.  The first three weeks are setup to be a full week of Irinotecan which is 1 hour of pre-hydration then 1.5 hours of the chemo and 2 hours of post-hydration every day for 5 days of the first treatment week.  At the same time we will be Vincristine given once a week for 3 weeks and is only about 15 minutes long.

The first week of treatment goes well.  The antibiotic they started 2 days before treatment has helped to keep her from getting diarrhea from the Irinotecan and the anti nausea medicine they administer before every treatment has helped her not get as sick.  She has to take many oral medicines still to help with bowel and bladder control.  This is becoming a bigger and bigger battle each day.  She has been on steroids for inflammation of the back surgery and the roid rage is becoming intense.  Every feeling is exaggerated and the displeasure of one of her med’s is not going well.  After spitting it out and blasting it all over the room 3 unsuccessful times in a row we were able to switch to a pill on that one and put it in apple sauce.  This greatly eased the morning and night med time.

Now that chemo has been started things are going well we just need to wait for our second treatment on Wednesday 7/1 of Vincristine and we will be evaluated to go home.