special K and MRI

Zoe had another MRI on Wednesday... when Sean and I arrived in the recovery room, the nurse told us that they had to give Zoe some Ketamine.  My unspoken response was "ARE YOU KIDDING ME??  You gave her WHAT??"

You see, in my pre-mom life, I did some work as a substance abuse educator/counselor in various settings - prison, court system, hospital, and schools...  I learned about this funky little drug called "special K" - aka Ketamine.  Ketamine is often used in the club/rave world because it is a short-lasting dissociative anaesthetic that causes hallucinations.  In the veterinary world, Ketamine is a large animal tranquilizer.  My sweet little girl is neither a raver nor a large animal, so why in the world did they give her Ketamine????  Well, ketamine is also used as an anesthetic, so it was actually perfectly safe and appropriate for them to give it to her (her leg kept spasming during the MRI) but my initial reaction wasn't so accepting...

Anyhow, back to the MRI... the results showed neither growth nor shrinkage.  Stability is considered to be a positive outcome by the doctors.  I didn't expect any shrinkage since Zoe has had only two whole doses and two partial chemo doses in the past three months.  She was supposed to have chemo directly after MRI, but surprise, surprise her counts weren't high enough - even after a three week break from treatment... this definitely made me feel a bit disappointed and frustrated.  Zoe has had problems with her white cell count all along and it just seems to not make any major improvements, regardless of whether we keep her out of public, follow the neutropenic diet, yada yada.  So, we might try one more round of chemo and then rethink our options.

gimme a break

It has been so nice the past three weeks to have a break from chemo! Happy kid, warm weather (finally), it's been fabulous! Although Zoe has a break from chemo, she still has to have weekly blood draws... BUT her doctors arranged for a nurse to come to the home and take care of everything. Life is good...

no wonder...

I will no longer wonder why my kid seems to always be neutropenic... yesterday, my brother and I took Z and Loola (aka - Kambree) on a short walk and Zoe picked up some leaves from the middle of the road, started to eat them, and offered one to Loola.  Seriously!?  Apparently she thinks we can eat any leaf since we eat spinach, basil, and mint.  Not so much...

PARTY!!

When I told Zoe she gets a three week break from chemo, she went crazy and started running around the house yelling PARTY, PARTY!!  We are so excited!!  Zoe's neutrophil count was still at 500 (neutropenic) this past week, but I think her new doctors are realizing that she's not likely going to make major improvements... so if we're ever going to make progress with chemo, we're going to have to make some exceptions.  So... they gave her 75% of her dose.  She's had a really good week - no fever/reaction to the chemo, and no throwing up.  It's been great!

can you see?

Can you see??  I've heard this phrase several times this week as Zoe laughs her little head off and gives me eye tests.  She thinks it's so funny to give the tests to others, and I have to laugh as well...  She had "real" eye tests last Monday and there isn't anything new to report, which is good in one sense.  The pallor on the left optic nerve hasn't gotten any worse and her vision in that eye remains 20/25, thank heaven.  The right eye is about the same - she seems to sense light, but can't "see"...

no chemo

Z was still neutropenic yesterday, so she did not receive chemotherapy.  However, the good news is that the doctor thinks that the issues Zoe had last week may not have been related to a "hypersensitivity" to the carboplatin.  Because of other symptoms Zoe developed last week, her fever/other issues may have been simply a viral infection - I'm really hoping this is the case, but we probably won't know for sure until she gets another dose of carboplatin.

Zoe's chemo appointment last week went perfectly -- at first...  I was shocked that her neutrophil count was high enough to get treatment - that was a nice surprise.  Everything went quickly and it looked like we were going to get out of there by 1pm.  We were almost out the door and then Zoe started shivering uncontrollably and walking like a robot.  I felt her head and knew she had a fever... sure enough, 103 and rising.  So, needless to say we did not get out of there by 1pm. 

The doctor believes that Zoe has developed a "hypersensitivity" to the carboplatin - this is not good...  not quite sure what the treatment plan is going to be at this point.  We'll discuss at her next appointment on Wednesday.

(Back to her last appointment) -  When they realized Z had a fever, they had to reaccess her port and give antibiotics.  We were there for another couple hours...  It was a long day, leaving my parent's home at 7:30am and getting home at 5pm.  When we got home, Zoe seemed to feel fabulous.  She ran around and jumped on the trampoline with cousins for a couple hours.  By bedtime, her tylenol had started to wear off and she was ON FIRE!  Her fever was 105 - no exaggeration.  She has had several fevers of 104, but this was definitely her highest fever ever.  She still had a fever the following afternoon, so we had to go back to the hospital for more antibiotics.  They also performed more blood tests and noted that her neutrophil count dropped from 1300 to 500 in one day.  Since she had been having a fever and now her counts were low, they said she was on the verge of needing to be admitted to the hospital... BUT they said since I was a "conscientious mother" she could go home and I would just need to watch for certain symptoms. 

Zoe is really an amazing little girl.  I feel blessed every day that I get to be her mom...  At this last appointment, I was holding her after she developed the fever, and she looked up at me and sweetly said, "I need you momma..."  It melted my heart.  I need her too - she changes my soul...

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!

the latest...

We had a conference call yesterday afternoon with Dr. Packer and it was amazing how we went from feeling very unsettled to feeling ok with the way forward.  Here is the latest...
Zoe has to immediately stop her current chemo treatment regimen due to the problems she is likely having with Vincristine.  Although experiencing vincristine neurotoxicity this early in the game is rare, it appears that is likely what is happening.  The benefits of this treatment protocol do not outweigh the risks.  At this point, the best option is to do "active surveillance" of Zoe's tumor.  We are taking a break from chemo for atleast three months and maybe for good (for the time being).  Zoe will have another MRI in three months to see what the tumor is like then.  If there is no new growth, we may decide to stop chemo altogether.  Zoe's condition will constantly need to be monitored and we will decide treatment options as we go.
Zoe will meet with Dr. Avery in about two weeks for more imaging and vision tests to try and determine what level of damage has been done to her left eye.  Dr. Packer does not know if the damage to her left eye is reversible, but was quite sure that no further damage will be done since her last chemo dose was over a week ago.  We are relieved that whatever damage has been done to her left optic nerve does not appear to be impacting her measured vision at this point.
Dr. Chang, Zoe's oncologist, wants to have Zoe's port removed if she will not be having chemo for atleast three months.  Because of her blood clot and other issues related to infection and maintaining the port, he just feels like it is the safest move.  If we do end up doing more chemo in a few months she will just have another port placed.  Zoe will have another vascular study probably within the next week to check the status of her blood clot and then Dr. Chang will decide about surgery to remove the port.

We have pushed our move to Utah back a few weeks until we can get things figured out a bit more.

There ya have it!