Zoe's neutrophil count came up to 700, so she had a partial chemo dose this past week.  Being in Utah with her cousins has been so good for her - she wants to play with them even if she's not feeling so hot. She has continued to be pretty nauseous - smells make her sick and she had a few days that she didn't want to eat anything...just the usual, to-be-expected stuff.

I'm curious to see what tomorrow brings.  I'll be pretty surprised if her counts are high enough to get chemo. 

thank you!!

Zoe LOVES when surprises come in the mail & yesterday was her lucky day.  Some kind, unknown soul ordered some fabulous books from amazon and sent them to her.  So... many thanks to whomever did this!!  If you let me know who you are, we can properly thank you :)

more of the same...

Zoe didn't receive chemo today because her counts were too low.... neutropenic again, surprise surprise.  Apparently with this new phase of treatment, doctors aren't supposed to administer chemo if a patient is neutropenic.  Since Zoe has been neutropenic for the majority of the past three months, I'm not quite sure how/if this treatment plan is going to work.  Plan D, perhaps??

in Utah

Z and I made our way to Utah two weeks ago... during the prelude to Utah, I spent way too much time on the phone with doctors, insurance, etc - I thought my head was going to explode.  It was a lot of work to get everything transferred...  But now we're here and everything is coming into place.  Last week Zoe and I  met all our new doctors, and I'm happy and comfortable with them. 

Zoe has had issues with nausea this past week - this wasn't much of a problem with her past chemo treatments.  I'm wondering if she has been sick just because her body had a break from the meds and now her body has to adjust again. Guess we'll see.  Even though she hasn't felt wonderful, it hasn't stopped her from playing with cousins.  She is having a blast!  (pictures to come later...)

normal kid

Although the month of April was undoubtedly difficult in some ways, it was really fantastic in other ways.  Zoe had a month break from chemo and it was absolutely wonderful to have our little girl back!!!  The transformation was pretty dramatic... all of a sudden she had great energy, her appetite was back, she was less moody - she was just back to her normal, fun, spunky self.  She gained about 2.5 pounds back and I was so happy to see her little chubby cheeks again.  Zoe loved being able to play with friends and be outside in the warm weather... pictures to come later.

confusion...

The month of April was a tough one... I'll be honest.  After receiving the news about Zoe's left (good) eye, everything with her treatment became so confusing.  Zoe's doctors had VERY different opinions about what caused the damage to the left optic nerve and how to proceed forward.  I haven't posted anything on the blog for a few weeks because I felt such a heaviness and didn't really want to talk about Zoe's treatment even though that was the only thing on my mind...
The dilemma:

Dr. Liu, the neuro-opthalmologist from Philly is the expert on optic gliomas... he suggested that perhaps Zoe's left eye was impacted from the beginning and this could not be detected on either MRI because the tumor involvment with the left eye was microscopic.  He said the Vincristine absolutely did NOT cause the pallor to her left optic nerve.  Dr. Liu believes that Zoe's tumor is fast growing.  If his ideas are correct then continuing the exact same chemo treatment makes perfect sense because this regimen was effective in shrinking the tumor and possibly making steps toward restoring vision to Zoe's right eye. 
Dr. Packer, the neuro-oncologist, is the expert on chemotherapy, brain tumors, etc.  He said that we can't rule out the possibility of Vincristine causing the damage - this would be rare, but there are several published studies saying this can happen.  There is too much risk involved and he is not willing to continue Vincristine, end of conversation.

So... what do you do with that???  Sean and I had a lot of intense discussions... obviously causing damage to Zoe's good eye is the last thing we want to do - this has become our top priority - possibly restoring vision to the right eye is now a lesser issue.  However, if the Vincristine is not causing the problem, it's very difficult to walk away from something that seems to be effective and promising (It makes me sick/stressed all over again just typing this...)  During one of our discussions, Sean and I thought Zoe was sitting in the back of the car listening to her music, but apparently she was paying close attention to what we were saying.  She piped up and said in the most serious voice, "I want my eyesight back... I want the blind to go away."  In that moment, we just felt horrible... she's three - she does not need to be worrying about this, but this is her reality...

After many prayers, several doctors visits, conference calls, yada yada, we have decided to continue chemo but only with the drug Carboplatin instead of the Carbo/Vincristine combo.  I wouldn't say that Sean and I have had a major confirmation that this is the absolute correct way forward, but this is a treatment that everyone can agree on... Zoe begins chemo again this Wednesday.

the circus!!

On April 14, all the "chemo kids" went to the circus together, courtesy of Growing Hope, the foundation Ms. Margy started.  Our little family had been looking forward to the circus for weeks!  We were worried that Zoe wasn't going to be able to go since she was still neutropenic, but Dr. Chang gave her the ok since she wasn't having chemo for a while.  It was such a fun night - a great diversion - and we needed that...  Zoe's favorite part of the night was having cotton candy for dinner :)  My camera wasn't working (which I didn't realize until the end of the night) so we don't really have any pictures of the evening... but we have a fun family memory!