Super Siblings

Every day is such a precious gift.Siblings have an incredible bond, especially when they are young.  They are each other's friend, foe, playmate, partner in crime, comforter, and encourager.  They are just always around.  Most siblings don't remember life without the other one around.  Carter and Julia have always had a close relationship.  They spend their days together, every day all day, and the arguments are minimal..usually over who's running the show.  Carter likes to be in charge (big surprise) and Julia has been a willing and cheerful follower all of her life.  When she first expressed a contrary opinion, he was highly offended.  This still tends to be the source of most fights.  He also gets irritated when she whines, we ALL do, but it is less these days.

Now the past couple days have been intense.  When Julia has a UTI, she is like an angry attack dog, poised to strike.  She takes out her anger, frustration, and pain on everything in her path.  Poor Carter has been yelled at, hit, kicked, and punched.  I pulled him aside after breakfast on Wednesday and said, " Look, Julia feels rotten and we have one more day of this until her medicines start working.  We need to give her space and do everything we can not to upset her. Hopefully we can all survive till bedtime."  He was so understanding and up for the challenge.  I think that is part of what made me want to write this post.

It has been touching to watch their relationship over the past year and a half.  When she was diagnosed, his life changed completely, too.  He had to come to grips with this beast called cancer at the age of 5. He was very concerned about her hair falling out and wanted to be the one to tenderly brush it after bath...
 
He was the one with questions, concerns, and worries. He would lovingly read her the cancer kids storybooks over and over.  It helped and reassured both of them in different ways...

He was the one passed from house to house as we were busy with the hospital and work.  He was the one left out, but deeply impacted.  His best friend and partner in life was missing from his life and in pain.  Even when she was at home, she was often in bed and sick.

The H1N1 outbreak made things especially tough for him.  Most siblings of kids with cancer are included in the treatment process.  The hospital staff do an amazing job of making them a part of everything that goes on and meeting their unique needs.  In our case, the hospital was shut down to siblings from October to April, so Carter couldn't even set foot in the building.  It created a lot of extra anxiety for him about what was happening.  He missed the reassurance of being able to at least see his sister and know she was okay.

When she was home, he was very attentive and did everything he could to make her feel better.  If she had to feel bad, he was going to be be right beside her...





 celebrating the end of treatment!!!


As the healing process goes on, we are able to see how he is handling all of this.  He has had many questions along the way that he has finally been able to ask.  He wants to know more about what cancer is, how it works, what is done about it, what all the different types are, how the scanning process works, how a person heals, etc. etc.  I am continually amazed at his ability to understand and reason.

I also see the anxiety.  He keeps track of all her appointments in his head.  He always knows when her next scan day is without us saying a word.  Scanxiety exists in the elementary set, too just on a different level.  He does not know what relapse is, but he knows what we are looking for.  Kids are smart.  As a parent I would love to be able to reassure him that everything will be fine, but there are no guarantees. We can't make him that promise.  It is a life lesson they are learning very early.

Seeing them together over the past months has been such a tremendous gift, like the rebirth of a relationship.  He has his playmate back and she is smiling again.  He is still very protective of her and concerned about her health.  Recently when she had to go to the ER for her UTI, he was frantically asking questions about where she would be, what tests would be done, how would they treat her, etc. As I was putting on her coat and shoes he was at the table working.  He ran over to hand her this as we walked out the door...

They are so blessed to have each other.  He is the leader and protector.  She is the encourager and comedian.  They fit together like two pieces of a puzzle.  Seeing them together laughing and being kids melts my heart every time.  They are eagerly making up for lost time. 

 
Every day is such a precious gift.

 
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Beach Week

You may have been wondering where we've been.  I'm happy to say we were on vacation.  Our annual family trip to Emerald Isle on the Crystal Coast of NC.

Absolute beach perfection...

The beach never disappoints.  We had sun, clouds, rain, winds, calm, and choppy- a little bit of everything- and we found ways to enjoy it all.

Carter was eager to hit the waves and didn't waste any time...

He was fearless in the water.  He has learned to swim well this summer and it has given him the extra confidence boost to boogie board and body surf with ease. 

It still makes us all laugh because two years in a row he wouldn't even get his feet wet!

Now he's getting lessons and learning fast.

The frequent wipeouts didn't deter him at all.  He'd hop right back up and head out again...

Julia loves the ocean, too.  She prefers to be held, but has no fear in going in.  She cries when she gets saltwater in her eyes, but begs you not to take her back to shore :) She's one tough cookie!

Anderson is a water rat himself and jumped at any chance to go join in the fun.

It still surprises me to see something new at the beach.  This year it was jumping fish! They would jump about 2 feet out of the water right in front of us! In my 30+ years of beach-going, I have to say I have never seen anything like it.  Anderson kept saying, "Here fishy, fishy! Come out, come out 'whereber' you are!"

Julia is still a big time sand lover.  She can sit and play for hours and did so everyday.  She was happy to have Daddy to bury...

and made many sandcastle masterpieces...

Mimi and her kiddos...

The many tide pools were a great place to rinse off and splash... or scuba dive...

Little Mr. Blue Eyes, such a charmer!

When we weren't at the beach, you could usually find us in the pool.  Water fights were a big hit...

and the giggles abound....

Made even better by late afternoon treats of popsicles and ice cream sandwiches.  It is vacation after all!

"Hey, are you going to finish that?"

And the best part about having a pool on the deck is the amount of energy burned.  We have decided it's like a treadmill for kids.  They swam until they couldn't move.

And Carter still adamantly refuses to nap.  He will go to great lengths to keep himself up, even holding his eyes open! He closed his eyes for about 2 min one afternoon and I caught him in the act... 

Many morning started with a round of putt putt.  All the kids are big fans.  Grandpa took the trio one morning and they were a site.  We had to laugh at the bodies moving everywhere.  Think golf meets Frogger :)

Julia was so proud of her putting and sticks with it for all 18 holes.  She even had a few hole in ones...

Followed by some sweet treats- salt water taffy...

Many evenings we headed to the beach for some kite flying.  This is something every kid wants to do often, but the wind doesn't usually cooperate.  The beach is a different story.  You pretty much release the string and it's airborne...

and some sand chipping for the boys...

 

We had some fun family time.  Daddy was able to stay for four days.  Everyone loves their Daddy-time!

My hands are full, but so is my heart...

It was such a gift to see Julia so strong and energetic this year.  Last year she was bald, pale, neutropenic, and exhausted.  The difference is incredible.  We praise God for this amazing gift!

She has been feeling well overall.  The bowel incontinence remains and I tweaked her medications and schedule to give us the best possible success and experience at the beach.  We are not following the GI doctor's orders right now, but it worked.  We decided quality of life was more important this week.  I was finally able to find some other Wilms' parents with the same symptoms.  They have been told much the same thing.  The surgery, organ removal, and radiation have all impacted the bowels.  The scar tissue, trauma, radiation damage, and organ resettling creates a host of issues.  They ensure it usually returns by puberty.  Everyone I spoke with is treating the issue a little differently, so we will continue to work to find the best plan for her that will help move toward one day healing.

We were all sad to see the week end.  The kids kept asking why we had to go home.  "Can't we just live here all summer?" I am SO with them on that one.  The beach is, by far, the best way to spend summers in the hot and humid southeast.  

We spent the last day enjoying the beach for as long as possible.  Grandpa and his little ducks...

After many hours of swimming and playing, Julia had sand everywhere- ears, eyelids, hair, skin.  She was 'breaded' from head to toe.  We are a bunch of beach bums for sure.  I am so thankful my kids love it as much as the rest of us do.  You have to drag us away.

We were on the beach into the early evening.  Julia and Anderson were dancing in circles and making up songs.  It was the epitome of simple childhood joy...

It was such a gift to be surrounded by God's beautiful creation and have the opportunity to have fun with our family. This was the first time I noticed all the flowers growing in the dunes.  The beach truly has it all...

I must confess that emotionally, we are still riding a roller coaster.  I spent much of the week wrestling with fear and faith.  They are both such strong, consuming forces.  My faith muscles were overwhelmed and abiding in peace was fleeting.

At this point it feels like we're walking along a tightrope of faith, while the fiery fear laps at our feet from below.  Just when we feel steady, the fire laps up and burns again.  Sadly, Skye Getter earned her angel wings August 1st.  She began her battle with the most favorable form of Wilms' and endured four relapses, surgeries, dialysis, and eventually death.  Unfortunately she is not the only one.  Statistics have always been haunting to us.  They are often used to bring hope, but in the end usually the opposite is true.  We know of so many Wilms' kids who are relapsing and having complications right now and it is something you can't ignore.  This is life in the cancer world.

I said to someone recently, "I don't fear the big things in life, it's the microscopic ones."  There is no way to know if your child's body still has anaplasia/cancer cells and where those cells may be lurking.  I have been talking with other families whose children had lung spots and they live with the same uncertainties.  Lung biopsies seem to be done when spots reach 5mm.  In the meantime it is watching and waiting to see if cancer grows.  Some have lung spots, some liver, and some kidney.  It is a part of the world we live in now and we have to find a way to make peace with it.  I'm not there yet.  Sometimes the fear and the unknown just swallows me whole- when I hear her laugh, when she says something sweet, when I see the kids playing together, and sometimes in the middle of a deep sleep.

I hate that I have thoughts of "will this be her last beach trip feeling this good?", "what will next summer look like?", "what is the future of our family?" I am trying desperately to live out the words of one of our first oncology nurses, "Keep your head where your feet are." It is the best we can do.
 
We are all changed from all of this and what we have and continue to witness.  Our priorities have changed. Our tolerance of selfishness and ignorance have changed. Our outlook on the future has changed.  Our sense of security and predictability has changed.  And our normal continues to change, more times than I can even count.

So for now we are savoring every moment, enjoying every opportunity, and hanging on to the ones we love in simple gratitude... 

        

Thank you so much for your continued prayers for each of us. It is a gift we cherish and a power unmatched. Join us as we continue to pray that the lung spots disappear and Julia's body heals. We give God all the glory for what He has done and continues to do! And we ask Him to carry us through these unknown waters.  We need sustaining faith.