treatment starts tomorrow

Tomorrow is the big day... I think Zoe is actually ready to start treatment because she is tired of having a headache.  As we were getting her ready for school this morning, Zoe was looking at her eye and noticing how big it looked and said, "We just need to start the medicine."

Because of the problems Zoe has experienced with blood clots, her oncologist said we could try to start treatment with IV access rather than a port.  If Zoe were to get a port again, she would also have to get two Lovenox shots a day to prevent more blood clots.  Not fun...

I sure do love this kid!!!

THANK YOU

A big thanks to family and friends who have helped watch the girls, brought treats, sent notes, and have offered to help in any way possible.  It means more than you know... We really do feel very supported - both physically and spiritually through your prayers and kind thoughts.  I know there are a lot of people I could call in a moments notice for help - that's a very reassuring feeling.  Thanks for the love you show our little family!

more eye tests

8:45 AM appointment in Upper Marlboro.  That is all I have to say and any of my Northern Virginia family/friends will feel our pain.  I had dreaded this morning for a couple days because I knew it would be one of those mornings that you feel kicked before you even get out of bed.

GPS said it would take us a little over an hour to get there, so since it was morning rush hour, I doubled the time.  We sat at the 495 exit for 40 minutes and moved 1 foot per minute - some of you know that this isn't an exaggeration.  I don't mind a leisurely 2 hour drive, but this is DC traffic people, there is nothing leisurely about it.

Anyhow... we pulled into the parking lot at 8:45 AM and I felt victorious!  Then, Zoe was the one who became the real champ because for the next 3 hours she patiently went through nearly every eye exam known to man.  They were certainly thorough, which I appreciate.  They want to make sure they have a very good baseline for everything before starting treatment again.  I had some concerns with her peripheral vision in her good eye, but it seems to be normal.  Zoe's good eye continues to see perfectly.

Accountability

I find myself having the same conversations in my head as I did 4 years ago… Decisions regarding Zoe’s treatment weigh heavy on our mind and heart.  It is much easier to make these decisions if they are for yourself, but this is Zoe’s body and Zoe’s life… and one day Sean and I will have to explain to Zoe why we made the decisions that we did.  There are a lot of what ifs and a lot of unknowns… Although Avastin sounds great, it is a “newer” drug and there isn’t much known about the long-term effects.  It is hard to move forward with unknowns…  God rarely heads anyone down a known and perfect path.  He expects that we will study and use our AGENCY to make an informed decision (in our case we need to research and talk with experts) Sometimes there is more than one correct path - each with their own speed bumps.  So, although there are unknowns, we feel ok about the way forward.  Does that mean everything with this treatment plan will go smoothly?  Probably not… But we have learned that the “rightness” of something isn’t based on whether or not it is easy or without complication.  When Zoe was first diagnosed in 2011, Sean and I both had strong experiences that caused us to feel that chemo was the right treatment option at that time.  So, we confidently proceeded with that plan.  Almost from day 1 there were problems.  Chemo Plan A turned into Plan B, C, etc…  and then eventually we had to scrap the plan altogether and quit chemo early.  HOWEVER, it was still the right plan and we can say that with confidence.  I haven't really had an experience this time around that has given me 100% confidence or surety - but I can say I feel like it is a good choice - it doesn't feel wrong.  So, we're moving ahead...

keeping it real

Remember in my last post when I said that I wasn't worried about Zoe's treatment??  Well, now I am... I started reading more about the side effects of Avastin and kind of freaked out.  The major side effects aren't common but they are SeRiouS!  AAANNNDDD I realize that every drug we take has the potential of serious side effects and reading the warnings for tylenol can freak you out.  But I am just feeling a little unsettled right now.  Zoe unfortunately experienced many of the uncommon side effects of her first round of chemo drugs so I am really praying she can catch a break this time around.  I know Zoe's doctors have had experience with using this drug for treatment and they are very cautious people.  But it's really hard to be the parents and have to make this decision for your child.  UGGGHH!

We are scheduled to begin treatment on Friday, but we have to feel ok about this treatment plan before then.  Overall, I really do feel ok but my heart just can't handle the thought of Zoe experiencing some of the awful side effects.

And a side note to my family: Don't show this to dad or Marsha (insert smiley face), don't call uncle Joe, yes we have the best doctors ever.  If I get 18 phone calls from ya'll today I won't "keep it real" on here any more -- hahaha!

everything is just fine

I'll be honest... I was slightly nervous to hit send today and share the news with everyone not because I am nervous about Zoe's treatment, but because I don't want ya'll to be scared and think that Zoe is all of a sudden seriously ill or that we are total stress bombs... because life here feels pretty normal.

WE REALLY ARE JUST FINE!  Saturday was hard, but now we are ready... we've done this before and we can do it again (especially knowing treatment should be easier on Zoe's body this time around!)  

I really don't feel stressed or scared right now... I have been trying to figure out if this is just a coping mechanism and if I'm repressing anything, but I think I legitimately just feel ok about things, and it kind of doesn't seem like a big deal.  Obviously when your kid has a thing growing in their brain that has made them blind in one eye it is slightly a big deal, but Zoe will be ok.  Zoe's health issues really don't impact her daily functioning and I often forget there is anything "different"

about her.  

We have an amazing support network (all of you!), we have a very strong understanding of God and why Zoe has to endure trials, we have insurance, we have one of the toughest little girls ever, and in our home we have a lot of love!  

We appreciate all your prayers -- maybe that is why everything feels like it will be just fine... 

the details of treatment

Some of you reading this didn't know Zoe during her first round of treatment so I want to give a really brief summary about her type of tumor...

*Zoe has an optic glioma... these tumors are typically slow growing and benign.  Although Zoe's tumor is treated with chemotherapy, her tumor is NOT going to spread throughout her body.  She has a brain tumor NOT brain cancer.

*Although the tumor growth since her last MRI six months ago has been "quite substantial" the tumor is still considered to be a low-grade glioma, rather than a more aggressive type of growth.

*Even though Zoe stopped chemo over three years ago, her tumor had still been hanging out in her pretty little head - but it had not been growing or causing her pain until now.

So basically what I am trying to say here is that Zoe is going to be just fine.  Unfortunately she has to endure treatment and she has to deal with the effects of her tumor (blindness in her eye) but she is a very normal, happy kid.  By looking at Zoe, you would have no idea that she experiences any health issues.

We are expecting that treatment this time should be much less intense - fingers crossed!  She will be given the drug Avastin once every two weeks and then every three weeks and possibly every four.  The downside is that this is a long-term treatment - she can remain on this treatment for two years if her body tolerates it and if the drug is effective.  Studies have shown that these tumors tend to grow again once Avastin is stopped.  So, basically this treatment is just a band-aid... it should soften/shrink the tumor and take away the pressure in her head so she doesn't have pain.  The goal of treatment is to delay surgery and buy time for additional treatment options.  (I will tell more about the reasoning to delay surgery in a future post).  It is challenging to think that we are just putting a temporary band-aid on something that we will have to deal with again, but this is the best option for now.

telling Zoe

On Saturday we had to tell Zoe that her tumor was growing and she would need to have chemotherapy again.  Sean and I talked about what/how we wanted to tell Zoe... we thought we were prepared for the conversation, but our hearts weren't prepared for Zoe's response.  

Zoe was so shocked and scared... she buried her head in my lap for a minute and then looked up at me with her beautifully trusting golden-brown eyes, with silent tears streaming down her face.  She wrapped her arms tightly around me and sobbed... and my heart broke that I couldn't trade places with her and I couldn't take the pain of her reality away.  

There were some tears throughout the day (along with some wrestling matches and laughter) but then Zoe broke down again at night and said, "Am I going to die, or am I just going to be sick?"  Again, my heart broke... Her sweet 7-year-old mind must have been thinking of and worrying about that all day...  In the past two years, we have had four close family friends go through chemotherapy... we prayed for them daily... Zoe saw three of the four very regularly... and three of the four died this past year.  So, I realized that when we talked about chemotherapy, her understanding of chemotherapy is what she knows of our friends experiences.  I don't think Zoe remembers most of the particulars of her first chemo experience, but she clearly remembers what our friends went through.  

Although Saturday was a really difficult day for everyone, it was interesting to see how quickly Zoe accepted reality.  It was kind of like she woke up the next morning and realized that we have to go that route again, whether she wants to or not.  But she has made it clear that she is expecting some stuffed animals out of it -- hahaha!!  

the break is over...

In my last post from 2011, I mentioned that Zoe would be "taking a break" from chemo since her blood counts were no longer high enough to allow her to receive chemo.  In other words, Zoe's immune system was already so weakened she could not tolerate chemotherapy.  Three months ago, for the first time in nearly four years, Zoe had a normal blood test... and ironically, her tumor has started growing again and her break from chemotherapy is now over.  

A few weeks ago, Zoe began telling us that her head and eye were hurting.  Zoe has not complained of this since she was originally diagnosed with a brain tumor four years ago.  We also recently noticed that Zoe's right eye consistently looked more proptotic (pushed out).  Sean and I suspected that her tumor was growing again, and an MRI on January 16th confirmed this to be true.  We have met with Zoe's team of doctors this past week and they conclude that the tumor growth has been "quite substantial" and requires treatment again.  The break from chemo was great while it lasted.  

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...