Tuesday, May 21, 2013

A Miracle

Sometimes we don't notice when one chapter of our life is ending and the next is beginning.  Other times, there is a clear demarcation: a birth, a death, a job change or a 4-states-away-move. We moved to Indy 4 years ago with a 6 month old.  During the past 4 years, we have had twins, had a child with cancer and seen her through treatment.  Needless to say, we feel VERY different than the couple with a new-ish infant that moved here! There is something about the heights of our highs and the depths of our lows that makes it feel like we have lived in Indianapolis for a lifetime.  Much like going through your house to pack up gives you an opportunity to sift through things, tidy up, pass things on that you no longer need, reminisce etc, I am mentally and emotionally "packing up" the last 4 years.  I hope (and know) that most of it goes with me, but a lot (especially dear friends) cannot physically make the trip.  I know that those relationships, forged through a shared faith or shared experiences or shared griefs/joys, will continue in some form, but it is sad that they will be different. 

This is also the first time that we've moved with non-infant kids.  I thought that moving would not be that hard for our kids since they are still so young.  Charlotte has proven me wrong.  In the past few weeks, she has been asking tons of questions.  She is very excited to be moving closer to family, but she is already, at the age of 4, aware of the loss that she will experience with the move.  Apparently, she is going to be a sentimental packrat like her mama.  She is sad about leaving our house and asks: Did we only borrow this house? What are the new people going to do to it? Will they bring their own stuff? She will also randomly say, "I'm really going to miss my bed...my books...my toys...etc" She is, of course, comforted though confused that these things will follow her to our next home.  She is excited about being near family but insisted that she still wants to ride her bike to her best friend's house. I feel ya, Charlotte...I feel the same way.  We have lived this season of parenthood in Indy...and though my stuff (and my family) will move with me to GA, it's going to be weird to be a parent in a new place again!  I'm already mentally military-grade child-proofing our next house in my mind because our son is a monkey with no regard for pain ;)

We have been busy, hitting all the marks on the calendar....prepping a house for sale, selling and negotiating...taking Reese to a million last appts with specialists, tying up loose ends...and trying to spend time with people.  Tying up Reese's medical loose ends and prepping to transfer care to another state has made me reflect on the past 2 years again.  A few weeks ago, we met with a specialist who saw her in the very beginning.  As Reese sat on my lap in the clinic, she proceeded to sing Holy, Holy, Holy, the ABCs, and itsy bitsy spider, randomly interjecting long strings of "Reese jabber" complete with hand motions (both song appropriate and improvised). He, like most other people who "talk" to her, couldn't help smiling and laughing at her...which only encouraged her to do it more.  We talked about the plan from here, her developmental delays and her progress, etc.  As he left the room to grab some paperwork, he said, "you know, we never thought she would look this great now. She's a miracle. I don't know if I even believe in miracles, but she's a miracle."  I didn't answer him (bc it was almost under his breath), but as he left, I thought about all of the many, many prayers...the many, many obstacles...the many, many complications....the many, many days and months of near constant vomiting....the many, many days of covering PICC lines and central IV lines....the many, many days of not being able to hold her because she was uncomfortable...the many, many days of not going outside...the many, many days of seeing her siblings for only a few hours a day.  Yes, I DEFINITELY believe in miracles.  So many answered prayers. So much peace, so much comfort, so much growth in me, so much trust in the goodness of the God who allowed me to go through a deep valley and bring me out on the other side....and most importantly a sweet, bubbly girl, who may have side effects/delays, challenges that other kids don't have, but who is the funniest, most resilient red-headed girl I know!  

Today was a special day.  Reese had her last MRI scan at Riley and her last neuro-oncology appt before our move.  It has been on my calendar for 3 months, amidst everything else.  I haven't thought about it much in all the busyness, but a few days before the scan, I always feel nervous.  We are about to leave our safety net at Riley, where the nurses, doctors, therapists, pharmacists, janitors, receptionists, etc have seen Reese at our worst and now at her best.  They know her story.   We have a new place to live, a new job, plans in another state, etc so I felt a twinge of anxiety about the results.  What would we do if she needed more treatment? Well, great news is that that her scan looked great from a tumor perspective: "no evidence of residual or recurrent tumor"...whew-hoo!  Though her scan shows plenty of evidence of the battles her brain has faced!

We had a great time in clinic, getting last minute information and visiting all the nurses, doctors and staff.  There is a bell hanging on the wall of the heme-onc clinic with a poem beneath it that patients (or their parents) read at the end of treatment.  There is a celebration with a certificate and medal.  Most of the providers in the clinic gather around to cheer while the patient rings the bell.  I walked past that bell so so so many times during the course of her treatment, 6 times on our way to a 3 week or more inpatient treatment.  Other times for weekly appts with Reese in her mask after she was done with inpatient treatment.  I saw other celebrations happening there and thought about how nice it would be to be done.  Reese technically finished her chemo in March 2012 but she was barely a year old.  She had many follow ups and had to wait for her bone marrow to mature, etc.  Today, a nurse suggested that we have a celebration since it was our last visit and since Reese could finally enjoy it.  I think I started crying a few seconds after that.  We still have to have frequent scans and go to specialists/therapies, etc, but we made it through! It was just overwhelming to realize that we had made it to that moment.  My camera ran out of memory so this last part was recorded on a cell phone.  They presented her with a medal and certificate on the other video but this part was longer and cuter (except for me...hahah)




Thank you all for praying for Reese and for us.  Thanks again for the meals, the notes, the hugs, the facebook likes, the cheers from the sidelines.  Thank you to our Indy friends.  Thank you to our medical providers.  Thank you to our co-workers.  Thank you to our many dear babysitters.  Thank you to our family.  You helped us make it to this point...and for those of you we are physically leaving behind...we are going to miss you like crazy!

Some friends we will miss!

Charlotte and her BFF, Evie!



Sweet pea!

How many kids can you pack onto a babydoll stroller? Don't know but
it only took 2-3 to make the wheels go parallel to the ground!

3 guys who kept Brian sane during a difficult time!  

Reese's first manicure before Riley Cancer Center Prom

Sara, a sweet nurse, who took great care of Reese

Family shot before Prom!


Another of Reese's nurse friends!


Brian's choice for Philip's face painting experience

Sweet girls!

Dancing with Daddy

Sweet babies


Reese with her social worker and nurse friends!

Brother/sister dance


Adores her Daddy!


A mermaid that our children LOVED!

Reese hitting the dance floor with Daddy



First time the sisters both wore night gowns.  Reese chose to rid
 herself of her diaper by the next morning so she is back in footie pjs for now
..hahah

Twin tricyclists

They're a tough tricycle gang...(or an aloof one, i'm not sure)

Charlotte's mother's day program at school

Playing with another friend

Hitting the museum while we still can...

One of Reese's therapists!

A few of Reese's doctors and nurses from heme-onc clinic.

Tiffany, a sweet nurse from stem cell

Reese's primary nurse on heme-onc, Leah

And I have lots more photos that I could upload....and many more to take during the next few weeks!
A few videos below for Riley Cancer Center Prom below:







Tuesday, January 15, 2013

Family Christmas, Memories and too many photos to count....

The past month or so has contained such a vast array of experiences and emotions for all of us.  I have sat down to update several times, but have not made it very far.

We took 3 weeks to adequately visit with our families in the south over Christmas break.  We started out for a week in Pigeon Forge, TN with rainy, mildly cool weather with Gran and Pepaw.  We had Christmas, swam in outdoor heated pools, went to the aquarium, and experienced Dollywood.  Next we went to my hometown where we spent a week with my parents, Nana and Papalou, and extended family. During that week, Reese got sick with vomiting and fever, prompting an ER visit to an Atlanta hospital where we found out she had acute pyelonephritis (kidney infection).  That wasn't fun, but we were thankful that it was not a problem with her shunt or tumor bed (vomiting prompts different worries in a kid like Reese).  Antibiotics and fluids set her straight and we left soon after that to go to Edisto Beach to be with Poppy, Mumsy and Aunt Rachael.  We celebrated New Years and  Charlotte's bday a little early and went for walks on the beach.  From there, we went to Augusta, GA and had a family party there on Charlotte's actual 4th bday.  The next day, we headed back to Indianapolis.  The details are too many to update so I will tell the story in pictures below.

Photos from early December: 


Reese about to scoot down the stairs.
Philip coming in for the tackle




The lowest emotion during this past month started on January 7th, 3 nights after we had returned to Indianapolis after Christmas.  My mom called me in tears, telling me that my grandfather, Papa, had passed away.  Though his health had been declining over recent months, this still came as a shock.  We packed up and left the next morning, travelling back the same way we had come just 3 days before.  We spent 3 days with family and came back for a total of 5 days gone.  The family time was sweet and we enjoyed remembering Papa together, but it was also incredibly sad.  He and my grandmother have been like a second set of parents to all of their grandchildren and it is hard for me to imagine life without him.  I am thankful for his faith and for the example of commitment/dedication to our family.  My life was definitely shaped by him and his love for all of us.  Almost immediately on the ride down, I started typing memories about him (to which all the grandchildren contributed during the days leading to his funeral) so that we could share a tribute to him as a grandfather at the funeral.  I'm glad to have it all written down so that I can remember him more clearly as time goes on.  He will be greatly missed!  While we were in my hometown during Christmas  (where my grandparents also live), we only saw him 3 times because he didn't feel well enough to get out much and because we were afraid Reese was contagious initially.  After we realized she had a kidney infection, we went to see him and Granny before we left town.  Reese sat in his lap for the 45minutes we were there and took a nap.  It was really sweet and they both enjoyed it.  I am so very thankful for that last memory with him.  Charlotte and Philip ran all over the house while we were there but also got to give him hugs as well.

Reese taking a sweet nap with Papa
 Losing him made me think about investing in the people around me and loving them well. I am thankful that he did that well.  This was evident by the long line of people who waited to pay respects to a 75 year old man, with people waiting for over an 1 1/2 hrs to speak with his family.  It was very touching and I'm thankful for those that did wait to offer comfort and condolences.  So while I still feel heavy from the loss, I do want to rejoice in the memories that we've made and the impact his life had.  Christmases have always been special in my family and I've spent almost every Christmas night at my grandparents' house.  Thankful to have had Christmas 2012 with our families.

The photos below cover over a month...and should've been broken up into at least 5 posts.  So if you like pictures, read on...or take breaks, because there are a LOT of photos!



Reese's first time in a swimsuit.  Ironically, it's in December! She wasn't allowed to go swimming until recently because of her central line and immune status.  She was a pro in the pool even though she doesn't like baths.  Apparently, if she's being held, it's fun!
What an outdoor heated pool looks like in the mountains!

Ripley's Aquarium.  Please note upside down scuba guy.



Charlotte crawling into the penguin exhibit.

Charlotte of the penguins

Philip enjoying a parent-approved climbing activity.  I'm truly afraid he's
going to be a thrill seeker all his life. Pass the Tums, please.

Petting a stingray

With Gran and Pepaw outside the aquarium

A laughable attempt at a family photo

Enjoying cartoon number 998 in the "movie theater" inside our cabin.

No Christmas is complete without cookie cake!  

Riding tram into Dollywood.

The girls riding the tram


Philip's first amusement ride.  He LOVED it!

Reese's first and only amusement ride.  She DID NOT love it!

A stroller ride was more her speed.

Charlotte was a super thrill-ride junkie.  She wanted to spin the teacups more than the "growing ups" were comfortable with!

A little scrambler action

They were adorable on this one.  Charlotte made sure her brother was safe.

Tried to keep Reese on board but she wanted out.

Maybe she knew what she was doing by declining the rides?
Total attention from the grownups!

This bumblebee is not made for anyone over 4 ft tall.  Brian was laughing hysterically at me from the sidelines and took about 20 photos of the process it took for me to get my legs in and a buckle strapped over them.  All of the workers there are retirees and the guy operating the ride was taking up for me and telling Brian that he had to ride next!

A miracle of aerodynamics.

Pepaw and bunny rabbit Reese

Anybody recognize this elf?

Charlotte's first ferris wheel ride

Taking a ride with Charlotte in the cars.  I got a preview of what Charlotte will be like as a teen driver.  If nothing else, she is VERY focused and would not look at me or talk to me during the entire ride.  She kept a look of intensity and only paused to honk the horn on occasion.

Navigator Reese and trouble maker Philip

Extreme focus

Brian's ride was a little rougher.

But ridiculously cute!



What I will look like in about 11 years...only 11 years? ugh, slow down, time!


Keep your eyes on the road, boy!

Feeding the ducks


Philip, Charlotte and Ducky

Hitchin a ride on the choo choo

Choo choo time


Not so sure about this guy.

Philip was kind enough to help get his Daddy to sleep.

She finally opened up about her hopes and dreams.

Happy Birthday, Jesus!

Santa at Cabbage Patch General Hospital


Watching a newborn get checked out in the nursery.

Reese trying to figure out how to feed her newborn.

Charlotte taking the oath of adoption: to give lots of hugs and kisses.


Reese was so serious about her oath that she used both hands.
Visiting with some family-in-law that prayed hard for Reese this past year and a half.



Catching a snooze with nana

Charlotte and a new friend/cousin

Granny and the babies

Catching up with old friends

Tickle fest

Papa at Christmas. Philip upside down.

Visiting with Grandmother Odom

Reese's visit to the ER.  Notice her diaper boxing glove to keep
her from pulling out her hard-won IV.

Reese, Papa, Papalou and Philip

Begging Aunt Terrie to sing itsy-bitsy spider one more time!



Giving Granny a bye hug.

Philip's first trip to the beach.  Showed no hesitation and ran
straight for the freezing cold water.


Poppy and Reese

He was going to check out the water, adult or no adult!

Checking out the rocks with Aunt Rachael

Beach ball on the beach!


She didn't care if the sand was cold and wet..

So sweet.

Father/son tag team







Philip becoming a pro at unwrapping.


Reese and her princesses

Christmas morning!

Twin conference

Karate kick to Charlotte's face. I'm not sure what she did to deserve it.

Melt my heart

Nana and Papalou



A glimpse at the chaos of 6 children 4 and under
and their parents/grandparents on Christmas Day.

Loudest toy ever

An example of "what not to wear"


Our best attempt


Rudolph escaped

Public service announcement: Store bought hot-air balloon might require expertise
 (and more than a hair dryer) to operate.

Awesome homemade birthday cake from Aunt Rachael

Tea party

Up and down the stairs


Crazy family photo on Charlotte's 4th bday

Nana and Charlotte on her 4th bday

Gran and Charlotte

She has been asking for a bday hat for her birthday all year.
We found an extra special pink one!

Philip's party hat.

Reese was not impressed with hers.

Ready to par-tay!


Make a wish!


Buddy from infancy, Wills!

Sorry mom, I can't talk right now!

Sweet, sweet, conversation between Reese and Kaylee


It's tough to have a birthday so close to Christmas, but gotta make the best of it!

About to make a break for it.

My parents claim that I'm always rambunctious.  I don't understand it,
since I quietly read to myself for hours on end.

Princess

Reprising an old party favorite: YMCA

Charlotte, warrior princess


The kazoo band

First snow day

Ready to go out and play

Checking out the snow, seconds before her parents covered her hands.









Super Philip (wearing his sister's pink boots because he didn't have any..oops)

At some point in this post, I got really tired of trying to get all of the photos into order so here are a few more beach pix.

The Stansfields at the Beach



Happy New Year from Reese!


We randomly saw some old friends at a Chattanooga McDonalds on the way back to Indy!