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.