S is for....

Yep, S is for scoliosis... I bet that was the first word you though of :)  We made the trek to Upper Marlboro again to meet with the spine specialist who told us that Zoe will be wearing a back brace until she is done growing because her spine is shaped like an S.  Amazingly, Zoe doesn't have pain (or probably more accurately she doesn't COMPLAIN of pain).  The doctor said a couple times, "Are you SURE you don't have pain??"  I think her threshold is pretty high... She also has a spinal fracture and her legs are different lengths.  As a result of all this, we have 4 MRIs lined up and more x-rays of her hips and legs.  I keep reminding myself what a blessing it is that we have insurance!!!  We are just hoping that the scoliosis is not caused by another neurological issue.  The MRIs will determine this.  After the spine doctor, we went to Chick-fil-A and the girls had a blast together.  

The day after the spine specialist we had chemo again.  Zoe's nurses had begged her to bring her violin and play for them.  Although Zoe is shy at times, she really enjoys playing her violin for people.  All the nurses and doctors stopped what they were doing and came to listen.... It was touching to me to see how excited they were to listen to Zoe play.  Z felt like a superstar :)

I feel like we get amazing care when we go to chemo.  Not only do Zoe's doctor and nurses provide excellent medical care, they do SO much to truly support her emotionally.  They understand how tough this is for kids... I felt a bit overwhelmed because they are doing so much to show they care - it's difficult to know how to express to them how much it means to us.
Nurse Mary surprised Zoe with some of her incredible cookies.  The picture isn't very clear, but she does AMAZING work!!!  She made all of the princess dresses with very specific detail.  AND not only do they look fabulous, they taste incredible!  Nurse Tiffanie made St. Patrick's day packages for Zoe and Claire with all sorts of surprises.  Zoe was so excited and couldn't wait to get home and give Claire her package.  Alex (the violinist) and Heather (Nurse Tiffanie's daughter) came back to the clinic to say hello - it meant a lot that they would take time off work again to drop by.  We are so blessed!!

an update a little late

I keep forgetting to update Zoe's blog because life feels pretty routine right now and I kind of forget we are doing this treatment thing all over again -- because, so far, chemo has been nothing like it was last time!  Thanks to GPS (the best invention ever!!) I navigated my way to chemo last week - I felt quite accomplished.  Zoe had a fun time making St. Patricks day crafts with Becky.  After chemo, we stood in line at the pharmacy and that took nearly as long as getting chemo!

Tiffani and Eileen - some of the best nurses ever!

feeling the love!

Zoe was sad that she was going to miss her school Valentine's party because she had to be at chemo.  BUT she has the most amazing doctor, group of nurses, and child life specialist and they had planned a special day for her while at chemo.  I had to take Claire to the doctor, so I didn't get to see everything first-hand, but I cried when Sean called to tell me about everything.  Tiffany, one of Zoe's nurses arranged for a friend named Alex to come and give Zoe a violin concert of Disney princess songs.  Can you believe it?!!  And they didn't even know at that point that Zoe played the violin.  Alex, the violinist, and nurse Tiffany's daughter work in DC and they came to the chemo clinic on their lunch break.  Can you believe how thoughtful people are?  It was so incredibly touching to me that they would think of doing this for Zoe.  They also had a Cinderella gift box filled with chocolates, as well as other goodies for both Zoe and Claire and fun Valentine crafts.  Zoe was so excited to tell me all about her day.  I'm not quite sure I can express how much it means, as a parent, to have people continually doing amazingly thoughtful and selfless things for your child.  We constantly feel the strength and love that comes through prayers, kind thoughts, notes and packages in the mail, and thoughtful gifts to entertain and uplift Zoe.  I feel like every week is chemo Christmas for Zoe.  At the moment, Zoe has a "back-log" of gifts because people have been so thoughtful and generous... I blink back tears at least daily as I think about it.  Our family feels so loved and so supported right now... 

Valentine's Chemo - 2011 and 2015

peeing in a cup

Just to lighten things up a bit on this blog...
I'm overhearing the girls playing upstairs and Zoe is teaching Claire about peeing in a cup.  Made me laugh!  Such are the details of her life... and I hope we perfect the details because last time didn't go so smoothly. eeek!!!

the FAITH of a child

Zoe’s child-like faith continues to amaze, inspire, and teach me.  As I have seen her accept her current situation, I am humbly reminded how precious the faith of a child is… I asked Zoe why she seems to be ok with things and why she trusts that her dad and I are making the right decisions.  She said, “because you are my parents and because you pray.”  (sheesh - a response like that is kind of heavy and makes you want to make sure you don't screw up!!)

When we told Zoe that she needed to do chemo again, she was scared and obviously didn’t want to go that route again.  From her perspective, her parents were asking her to walk toward a “hell” that she had already visited… a “hell” that she had recently seen several family friends visit…  But she became accepting of this… Why?? Because her parents told her it was best for her - that going through the trials associated with treatment would eventually help her tumor.    

When I became a parent, I began to understand more about the love and awareness our Heavenly Parents have for their children.

(yes, I believe not only in a Heavenly Father but a Heavenly Mother as well… A conversation for a different time if any of you want to have it… for now I will just refer to Heavenly Father or “God”) 

The relationship we have with our Heavenly Father is just as real as the relationship Sean and I have with Zoe…  God knows and loves His children individually and perfectly!  He is familiar with the smallest details of our lives.  Life is full of challenges for a reason - although often we don’t understand that reason.  There is purpose in trials.  (There are trials that come into our lives and there are trials that come about due to poor choices of others… )  Do we trust that a loving Heavenly Father would not place a trial in our life that would eventually be for our good or for the good of those around us?  Do we have faith like a little child?

One of my favorite scriptures regarding trials is found in the Book of Mormon, in Alma 7:12.  “And He will take upon Him death, that He may loose the bands of death which bind His people; and He will take upon Him their infirmities, that His bowels may be filled with mercy, according to the flesh, that He may know according to the flesh how to succor His people according toe their infirmities.” 

This scripture explains that Christ not only suffered for our sins, but He took upon him the pain associated with our sickness, our heartache, etc.  Any difficult thing we experience, Christ experienced.  WHY??  So that He would know how to perfectly “succor” or support us during those times.  Why did a loving Heavenly Father allow His son, Jesus Christ, to suffer in such unimaginable ways?  Why was this trial not removed from Christ's life? Because Heavenly Father knew and Christ knew that this trial would eventually be for the good of all.

so far so good

It seems almost too good to be true, but Zoe hasn't had any negative effects from chemo!  The first few days after her treatment I asked her probably 80 times  "Are you feeling ok?"  and five minutes later "Are you STILL feeling ok?"  I'm sure I was more than a bit annoying!  Even though I knew this treatment would be easier than last time around, it has been kind of surprising that she has felt totally normal (other than her headaches.)

chemo day

Friday started with a 6 AM family dance party to "You Don't Know You're Beautiful!"  (I don't think my children will ever learn to sleep in!)  We got Claire packed up and off to spend a fun day with Aunt Jen and then the rest of us left for DC.  I drove so I can feel semi-competent driving without Sean for future visits.  We didn't die on the way there, which is slightly a miracle - the farm girl in me can't handle driving in DC.  

When Zoe had chemo last time around, our insurance, Kaiser Permanente, didn't have their own pediatric oncology team, so that was contracted to a group outside our insurance.  Since then, Kaiser hired some of those same oncologists and nurses and created their own group.  So, although we don't go to the same chemo clinic as last time, we still get to have some of the same wonderful doctors and nurses.  AND those doctors and nurses make all the difference!!!  We feel so grateful to have such awesome medical care for Zoe!  Zoe's primary oncologist, Dr. Perdahl acts like she has all the time in the world to answer any question and she is very responsive to emails, calls, etc.  The nurses are awesome as well, and one of them could make a lot of money as a stand-up comedian.  We laughed the entire time Zoe was getting the chemo infusion - real laughing that makes the muscles in your cheeks hurt.  We were at the office forEVER but it went quickly because we were being entertained the entire time.  

We left the house at 9:30 and by the time we got Claire and went to the pharmacy, we didn't walk back in the door until 6:30.  We were all exhausted!  I don't know why doctor days are so tiresome because you don't do anything besides sit, but every time we go we come home totally spent!  Thankfully, a friend made an absolutely delicious dinner.  So we ate, and everyone was in bed by 8:30.  How's that for a Friday night??! 

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!!