playing catch up...

Here is a quick attempt to catch up on what's been happening with Little Miss Z the past three months...


Zoe became a BIG SISTER!!! She absolutely adores Claire! She has to be reminded 83 times a day to give her a little space... We all feel so blessed to have this new little babe as part of our family.


Zoe turned 4! She suddenly became very preoccupied with who is bigger, older, faster, etc - and she thinks she is all of the above and she isn't afraid to let other kids know this. 

 

In August, Zoe's doctors suggested that we "take a break" from chemotherapy... Her neutrophil counts continued to stay low throughout the summer, so we weren't able to have chemo regularly. Decisions regarding Zoe's treatment are always difficult for Sean and I to make... One day we will have to explain to Zoe why we did or didn't do certain things, so we always feel the weight of our decisions because they will have a life-long impact on her.  On a selfish note, I am welcoming a break from chemo. I'm excited to let Zoe be more of a normal kid - to go to preschool, play with cousins & friends, eat what she wants, etc. I'm tired of taking her to the hospital every time she has a fever (and we did that plenty this summer). So, since we are no longer doing chemo, Zoe had surgery the end of October to get her port out!

We celebrated with the Turner crew by having a PORT PARTY - Zoe was really excited about it and helped pick out the treats and food she wanted.

Zoe finally broke the Halloween curse!!! This is her fifth Halloween, but it is the first year that she has actually been able to fully celebrate Halloween, American style. On Zoe's first Halloween, she was readmitted to the hospital, after having already spent two months in the NICU. Her second and third Halloweens were spent in Jerusalem and although the consulate does a great job of making Halloween festive for little kiddos they still miss out on the door-to-door trick-or-treating. Zoe's fourth Halloween was also spent in the hospital. Finally, this year she broke the curse... and she had a blast running around with her cousins.

Our time in Utah came to an end.  We were very sad to say goodbye to the Turner crew... but it was time to get back to "normal" life -- (although this last year has felt like anything but normal).  Anyhow, it's great to be living together as a little family again.  Zoe was also really excited about going back to preschool.  Also, although we had to say goodbye to Nanny and Poppa, we were so happy we got to spend a bit of time with Khaki and Bim during a quick trip they made to Virginia.. 

 

So, Little Miss Z is doing really well, all things considered.  She has another eye exam tomorrow and an MRI in three weeks so I will post about that later.  Since we aren't doing chemo anymore, I won't be posting too often since my original intent was for this to be a blog about her treatment process... I will try to give more timely updates when we have them. 

We continue to feel so blessed by the love, support, and concern you have shown us.  It means more than you know...

Pediatric Brain Tumor Foundation Event

Last Saturday, the annual "Ride for Kids" event happened to be in Morgan, Utah - of all places!! Because I didn't want my kid bailing out of a side car on the highway, I didn't let Zoe ride in the motorcycle part of the event, which started in Salt Lake. But the ride ended in Morgan, which was super convenient for us. I had no idea what to expect of this event - I was told it was a picnic, but it was a formal, three-hour program. Each of the kids were asked to come up on the stage and tell about themselves. Zoe decided to sing "I Love You a Bushel and a Peck" and she stole the show... definitely the FitzGerald in her. I have to say I was a pretty proud momma. Even the big, tough biker dudes were teary-eyed. Perhaps at some point I'll download the video... 

three blind mice

As we were driving in the car, Zoe must have had some sort of epiphany and she excitedly said, "The three blind mice are blind just like me! But they must have two tumors because they are blind in two eyes, not just one like me!"

too old to pray

Since we have been in Utah, Zoe hasn't been very willing to say prayers... one day I asked her what the deal was and why she didn't like to pray anymore. Her response was, "I'm just too old for that now." She is more than willing to interrupt others and tell them what to pray for though. Nearly everytime I say our family prayer I hear, "Mom - Mom - you should bless for....." Even though Zoe is "too old" to pray, she apparently still has faith in and senses a need for priesthood blessings. A few weeks ago we were at the park and I had been taking some pictures of Zoe's darling cousin, Drew. Completely out of the blue Zoe said, "I think Drew needs a blessing." So, she proceeded to give him a blessing. I was sitting too far away to hear the words she said, and perhaps I should have been more reverent, but I was camera-ready and my first reaction was to snap a few pics. You can tell by the pictures that she was completely serious. It has been interesting the past few months to see Zoe's understanding and faith develop.

Angels... and my sister

For many years, I have loved the scripture found in Doctrine and Covenants 84:88; this scripture has taken on added significance the past several months... 

"...I will go before your face.  I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." 



Since Zoe was little, before I walk out of her room at night I have said, "Angels will watch over you and I'll see you in the morning."  I know that angels have been watching over Zoe the past several months... and I know my sister Robyn has been one of them.  I have felt a particular closeness with Robyn since Zoe has begun treatment... Robyn knows what Zoe is going through.

Exactly two years ago today, Robyn began her work as a heavenly angel, after her courageous battle with cancer.  I miss my sis in ways I can't describe... but I know that her work continues and I'm grateful Zoe has an extra-special angel to watch over and comfort. 

examples of faith and strength

This past week, three women have made an impact on my heart and have taught me some important lessons... and I want to make sure I have a record of it, so I'm including it in this blog.

Zoe made a friend at chemo our first week here in Utah - I'll call her Kaylee.  Kaylee is 11.  She had two brain tumors - one large, one smallish.  The large tumor was removed through surgery, but the small one couldn't be removed.  The chemo and radiation treatments caused the small tumor to split into about 20 smaller tumors.  Kaylee doesn't have much of a short term memory and she wasn't able to attend school much this past year because she was too sick.  She's very skinny and frail, but has the biggest smile, dazzling eyes, and a fabulous attitude.  She's darling... and she is always so happy to see Zoe.  Well, last week at chemo I talked with Kaylee's mom for a while.  Apparently Kaylee has started to have strokes - three in the past three weeks.  Her mom said that in the research she has done, once kids with this type of tumor start having this type of stroke, they die within three weeks.  Maybe Kaylee will prove to be different, but  I don't understand how a mother can know and accept such an outcome...  That takes incredible faith.  I asked what Kaylee understood of her prognosis and she said that one morning Kaylee woke up and said, "It would be so much easier if I just went to bed and didn't wake up."  This isn't a little girl giving up - she's a fighter - it's just a little girl who understands what is happening...  Kaylee's mom told her if that was what she felt she needed to do, it would all be ok... I can't even type right now because I can't see the screen through my tears... it absolutely breaks my heart.

Yesterday, I met a woman (I'll call her Deb) and her three-year-old angel daughter at chemo.  The sweet little angel (I'll call her Brooke) has Down's Syndrome and leukemia.  When I initially saw them, the first thing that popped into my mind was, "Double Whammy..."  Actually, after talking with Deb more, I learned it was more like a quadruple whammy...  Brooke has an identical twin who has recently started showing all the same signs of leukemia.  Apparently the fact that she is an identical twin and has Down's Syndrome make her more susceptible to this type of leukemia anyway.  The parents feel strongly this is what is happening, but they are waiting to have her tested until after a family vacation this next week.  This family vacation is the last wish of Brooke's grandmother who is dying of cancer.  And there is more... Brooke is #5 of 7 children.  One of Brooke's siblings is on the Autism Spectrum.  I can't imagine the demands on Deb's time and her heart.  As I spoke with Deb, I was truly in awe...  Prior to Brooke and her twin being born, Deb and her husband had no idea the babies had Down's Syndrome.  It was quite a shock, but they are so grateful for their angel babies and would not change a thing.  When Brooke started to become sick, Deb took her to the pediatrician several times during a month.  The pediatrician kept dismissing her concerns, but things became progressively worse.  Eventually a blood test was performed at a different facility which confirmed that Brooke had leukemia.  By this point, Brooke was extremely sick and the doctors said she would have died within two weeks if this wouldn't have been caught when it was.  It would have been very easy for Deb and her husband to be angry with the pediatrician, but they aren't... they have forgiven him... They rely upon each other and they rely upon God and He blesses them with grace and strength... 

As Zoe and I were leaving the hospital yesterday, we were so blessed to run into some family friends whom we don't see very often.  ("Jen," two of her children, and Jen's mother)  This family is incredible and they had a great impact on Sean's life growing up, and more recently have influenced my life as well.  We love and appreciate their entire family for many reasons...  They were at the hospital yesterday for some appointments for Jen's son, who has various "disabilities" (I really don't like that word...).  As I saw Jen pushing her son's wheelchair, I immediately thought about what is required of her to care for her son's physical needs.  I had the privilege of working at a summer camp for children/young adults with disabilities - I'm grateful for what I learned through that experience, but it was so physically exhausting... and Jen does that daily... mom's don't have a break.  Then I thought about what it is like for Jen to be at the hospital... Jen's beautiful daughter died a few years ago from leukemia.  Jen has spent too much time in a hospital and I wondered if she felt haunted by difficult memories whenever she had to be there.  I know that God does not test us with more than what we are able to endure - Jen has endured more than most can imagine... clearly, she is a strong and choice woman. 

**I found a quote by Elder Neal A. Maxwell about a month ago that has really stuck with me... "Rather than simply passing through trials, we must allow trials to pass through us in ways that sanctify us."  To sanctify means to make holy and to purify... These three women, because of their personal strength and their faith in God, have become purified through their trials.  How grateful I am for their examples...

recap of the week

Neupogen did the trick - for a minute...  Zoe's neutrophil count went from 500 to 9,000!!!  When I told Zoe that her "blood was good" (meaning she wasn't neutropenic anymore) the first thing she said was "YAY - can I have a strawberry then?!"  I loved this child-like response, but it made me sad because it really showed that she understands things... She gets it that when she's neutropenic a lot of her favorite foods aren't an option... and she goes with it.  Such a good kid. 

Zoe got a full chemo treatment on the 27th.  I've heard Neupogen called "the shot of life" and she definitely had plenty of spunk this past week and seemed to feel really good.

On Tuesday the home health nurse came for a blood draw - not great results... she was back down to 600.  Everyone expected that she would drop again, but not that quickly.  I felt frustrated...  I know this treatment process is a long road, but it gets tiresome when it seems like every route we take ends up with some sort of road block.  I'm grateful for opportunities I have to talk with other families going through treatment, because it gives me the attitude adjustment I need, so my pity-parties don't last too long. (I'll blog about that soon, hopefully...) 

We went to the doctor yesterday and her counts dropped a bit more to 500.  They decided to give her a partial dose of chemo anyway.  I'm expecting her counts to drop even more this week so we need to be careful.  Great timing because it's the Morgan County Fair :)  Zoe has been talking about the fair for months - truly.  And I've been excited to get her all dolled up in her red cowgirl boots and outfit from Khaki and Bim.  I think we'll still go, even if that means she has to wear a mask.  I really don't like making her wear a mask because of the attention it draws. 

neupogen shots

Zoe's doctors realized that her blood counts aren't going to make a dramatic improvement on their own.  So, last night we started neupogen shots which should stimulate her body to make more neutrophils.  Three shots a day for a bit... the poor kid was so good about it last night.  I'm running out of "shot spots" though - it's tough to find a spot in her little bruised arms or legs anymore, but we were finally able to start giving shots in her belly because it has a teensy bit of fat on it now.  I'm really hoping neupogen will do the trick...

Stuck on repeat

Same story as last week... Still waiting for blood counts to come up so she can get chemo.

The home health nurse came on Tuesday to do a blood draw - Z's counts are still too low to get chemo. It's so nice to have this home health system now so that atleast we don't waste our whole day sitting at the blasted hospital waiting to find out if she can get chemo or not. Zoe's cousins are so fascinated with all the shots, blood draws, etc. Nurse Nancy definitely had a captive audience on Tuesday - the cousins all wanted to be in on the action...

a family again

Our little family was all together this past week - it was wonderful!! Two months is too long... Zoe was beyond excited when she woke up last Saturday and saw her dad. We had a great time together and it was nice to have Sean here on Wednesday for Zoe's MRI. The next time Sean comes into town he'll have another little girl to hold and love...

physical therapy

Once upon a time, Zoe was comfortable climbing ladders all by herself. At the park in Jerusalem, there was a natural rock wall that was about 20 feet high and Zoe would climb it alone.  This all changed about six months ago, when she became blind in her right eye. She began to want someone to help her go up and down stairs, needed help at the playground to climb the ladder for the slide, etc...  We had talked about beginning physical therapy earlier in the year, but Zoe just didn't have the energy.  She has been feeling much better since being in Utah, so we started therapy about two weeks ago... I couldn't be happier with the way it's going.  The therapist is fabulous and works so well with Zoe.  The best part is she comes to the house for therapy.  Zoe made major improvements in just two weeks.  She will go up and down a ladder by herself and walk on the balance beam.  She still has trouble going down stairs, but we'll keep working on it.

 

 

desensitized

The other day Zoe was eating some candy, and I told her she could only have a couple pieces or she would get sick.  She thought for a minute and then said, "Well, if I get sick you can just take me to the hospital."  Another day in the hospital = no biggie for Zoe... in her little mind, she can eat candy until she pops and then just go to the hospital to get better.  She is completely desensitized...

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!

peace during trials

It was a "heavy" weekend... we had a nice time together, but in the back of our mind our heart, Sean and I had a lot of worry related to our latest news.  On Monday, while I was studying my scriptures and reading The Book of Mormon, I came across a verse that was comforting.  Mosiah 29:20 - "Thus doth the Lord work with his power in all cases among the children of men, extending the arm of mercy towards them that put their trust in him." 

A few days earlier, I read this scripture Mosiah 24:13-15 "Lift up your heads and be of good comfort...I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."

What a blessing it is to know that we have a loving Heavenly Father, who knows our needs and is very aware of every aspect of our lives...

a little somethin' somethin'

Sean and I are wondering if the pharmacist is slippin' a little somethin' extra into Zoe's Lovenox shots... we certainly don't have issues getting her to cooperate for shots - in fact, just the opposite.  A few times every day Zoe will say in a dramatic voice, "Ahhh - You forgot the numbing cream and the shot giver!!"  I tell her that we only do shots in the morning and at night... but she repeats this every day.  It's slightly frightening that she seems to enjoy getting her shots.

wild child

Zoe was crazy on Sunday - and it was absolutely WONDERFUL!  All of the happiness, silliness, and energy that has been absent or surpressed the past 10 weeks was definitely unleashed.  We had such a fun day together playing at home in the morning and going on a long walk in the afternoon - actually not so much of a walk, because Zoe RAN the whole time... just like her old self.  It's amazing what can happen when you stop pumping poison into a kid's body...

unsettling phone call

Yesterday afternoon I received a call from Dr. Avery - Zoe's neuro-opthamologist... his news really caught me off guard.  Earlier in the day, Dr. Avery was looking again at the images of Zoe's optic nerve as well as the MRI scans.  He noticed that the optic nerve of the left eye (good eye) is more pale than it used to be. 
(A pale optic nerve = no life... No life in the optic nerve = no vision).  However, this is somewhat perplexing because Zoe's measured vision is 20/25 - it appears that she can see really well out of her left eye. 

Zoe is involved in a study conducted by Dr. Avery and Dr. Liu, the neuro-opthamologist she saw in Philly.  So, yesterday Dr. Avery sent the images to Dr. Liu, not mentioning his concern about the left optic nerve.  Independently, Dr. Liu had the same concern.  At that point, several others were drawn into the discussion to see if they could figure out what is going on.  Thankfully, it does not look like the tumor is involved in causing issues with Zoe's left optic nerve.  The other idea is perhaps there are neurotoxicity issues with the Vincristine.  However, the doctors all feel that it is too soon in the treatment course for this to be happening.  In my mind, this seems like the only likely factor if the tumor is being ruled out.  Zoe has already had "uncommon" side effects from Vincristine, so it wouldn't surprise me if she was experiencing Vincristine neurotoxicity even if it is considered to be too soon. The plan, as of now, is to continue treatment as expected and then do thorough imaging and vision tests in May and again in July. 

This weekend, Sean and I are trying to gather our thoughts and come up with questions to ask on Monday.  This news just made us sick... Zoe has one eye to work with - we can't take any risks with her good eye.  We may need to explore other treatment protocols - meaning other chemotherapy drugs.  It's a tough call because the current drug combo seems to be effective in treating the tumor, but we certainly have to go a different direction if this treatment is harming her other eye.  AAAHHHH!!  Thank heaven for a great team of doctors who are concerned and trying to help us make a good decision.

results of MRI and vision tests

So, the good and the not so good...

TUMOR: Zoe's tumor SHRUNK a millimeter in each direction - this is really significant!  The doctors never suggested as a possibility that the tumor would shrink. They said chemotherapy may "neutralize" the tumor and was known on occasion to possibly "soften" the tumor, but they told us NOT to expect the tumor to shrink. Zoe's MRI showed the shrinkage to be about 10-15 percent.  Also, the measured proptosis (eye bulge) has lessened, which the doctor said could be the result of the tumor shrinking.  The test results affirmed our belief in prayer and made us grateful for modern medicine.

EYE: The imaging of Zoe's right optic nerve shows slightly more "pallor" than it did three months ago - a pale optic nerve is not a good thing.  If the chemo has the potential to have a positive impact on vision, Dr. Avery said it could take 3-6 months before results are noticed.  We'll repeat tests in three months and re-evaluate.

BLOOD TESTS: The dreaded "N" word again - neutropenic.... grrrrr....  We actually expected this to happen since Zoe has had full doses of carboplatin the past two weeks.  Back to isolation and the neutropenic diet.  No fun for anyone...

The next phase of treatment will be four weeks of chemo followed by a three week rest period (we'll do two cycles of this and then another MRI and vision test.)  I'm thinking the rest period may be our saving grace.  It looks like Zoe's neutrophil count will continue to be very low whenever she receives carboplatin, so having that break should help her counts come up and allow her to have a bit of summer fun. 

Once again, thank you all for your concern, support, and prayers. 

chemo week 10

WEEK 10 - we made it! It feels like this process started forever ago. It's been a long three months. We are really anxious for Zoe to have her vision tests and MRI tomorrow, since that will determine what happens for the next several months. Also, Zoe's neutrophil count went up to the 900's this week - still low, but awesome for her!

Dr. Chao, another wonderful oncologist...

Making lego towers with Ms. Daniella...

more PINK!

Zoe will be getting a baby sister.  We are all beyond thrilled!

chemo week 9

Zoe's counts went up a tiny bit more - her neutrophils are at 570 now - nowhere near what they need to be, but above the neutropenic line and progress is progress. Dr. Chang said it is unusual that her counts would stay this low for this long -- especially considering that she had two weeks where she had NO carboplatin and then two subsequent weeks where she received only a half dose. So, we talked about some of the options we have to boost her neutrophil count. We will wait until next week and see what her counts are before we go forward with those options.

 

Getting "accessed" by Remi - one of the fabulous nurses.  Zoe loves watching when they do the blood draw because she thinks "the blood is such a beautiful color." (and she says this with such enthusiasm!)  She told me she wants to be a doctor AND a nurse when she gets big. 

 Zoe posing with Dr. Chang, her primary oncologist.  Dr. Chang has a little place in our hearts... He was the doctor that gave us Zoe's diagnosis and he was on rotation in the hospital the week Zoe was there - he was so patient and caring with us, always willing to answer our million questions...

 

Margy, Gretchen, Anne, and the munchkin - doing yet another art project...

This dose of chemo was actually a bit tough on Zoe. She has seemed much more nauseous and she can't stand the smell of anything. She eats her meals with one hand covering her nose and the other hand feeding herself.

(yes, this is a super healthy dinner of nachos... but the kid needs some chub on her!)

Our family...

*this is a disjointed post, but it all kind of fits together, so just keep reading...

About three months ago, I asked Zoe to draw a picture of our family, and this is what she drew... 5 "smiling" heads with stick legs and shoes.

Some of you know that Brother (whom Zoe calls Cutie) and Sister (whom she calls Beauty) have been part of Zoe's world for a long time... So it was no surprise that Zoe would draw them as part of our family.  Zoe started talking about brother shortly after beginning to talk and then sister followed about six months later.  We hear about brother and sister all the time... And Zoe quickly learned how to use brother and sister to her advantage - if she got a snack, she would need one for brother and sister as well, naturally...

So, going back a bit...  Zoe was diagnosed on January 11th.  On the morning of January 15th (a day or so after being released from the hospital) Zoe randomly said, "Brother and Sister were in bed with me when I was sick... and Brother told me that everything would be ok."  Well, that night we found out we are pregnant.  Kind of interesting...  And I have to admit that I was terrified for a few days that I was pregnant with both brother AND sister at the same time - but I'm not... just one little munchkin.  We should find out in one week whether it is a brother or a sister.  Here is an ultrasound picture from a couple weeks ago.

Because I will be on bedrest again, Zoe and I will be moving to Utah in about three weeks.  We will miss Sean like crazy, and hopefully he'll miss us a bit as well.  Zoe will continue treatment there (unless there are any major surprises with her upcoming MRI in two weeks).  I, on the other hand, will be parked on the swing in the yard eating burgers and shakes from Steph's drive-in.  I feel so blessed to have such amazing family members who are willing (well, willing atleast at this point) to do everything for Zoe and I the next several months.

One last little thing - I have felt really bad the last few months for not returning e-mails, phone calls, writing timely thank you notes, etc; I truly am so appreciative of the way everyone has supported and loved us - please know that... But most days when I had a free minute I was so exhausted or feeling like junk that there wasn't a whole lot I could do.  Please know that we have been so thankful!!!