Party Time!

We finally had Carter's birthday party this past weekend.  It had to be rescheduled because of a site conflict and Carter has been eagerly anticipating this day. 

Can you guess what kind of party he had?

 You guessed it! Marines! Our local gymnastics academy was a great choice. 

Where else can a budding Marine 'parachute' into his own party?

 

 There was lots of jumping...

 

 balancing...

 

 swinging...

 

 and giggling fun to be had by all!

 

It was great to take time out just for Carter.  He invited many of his friends and cousins for an afternoon of fun.  He has really missed playing with them this past year, with Julia's cancer.  It has definitely been the hardest on him.  He has adapted so well and completely understands why we have to be so careful.  After the first few months it, sadly, became normal to him. 

Carter loves gymnastics.  He used to take classes here.  He hasn't been able to this year because it conflicts with Julia's naps and we couldn't run the risk of germs taking her there with us.  It was such a treat for him to be back again.  Julia was napping at home with friends and he had a chance to be carefree again.  He is so attentive and careful with her when we are out.  It has become second nature.  It was great to see him run, laugh, wrestle, and play freely with his friends again.

 

He loved the tank pinata.  I think all the kids did.  When else in your life does an adult hand you a bat and tell you to hit something as hard as you can? I love that look they give you when you tell them they are up.  It only took one time around the circle before the candy was flying and the kids were squealing.

 

 It was a fun party.  The kids were all really sweet.  Carter was beaming when we got in the car afterward.  he said, "Mom, that was so fun! And it was so nice of my friends to bring me such great presents." He was relishing the joy of being the honored child for the day.  You so deserve it, Carter!

 

Happy birthday little Marine!

Out of the Mouths of Babes

Carter:  "Julia, let's be sojourners."

Me:  "What is a sojourner, Carter?" (curious to what he thought he was saying)

Carter:  "A traveler. We're a family of sojourners.  Can we travel to Walla Walla, Washington?"


Where does he learn this stuff?!

In Stark Contrast

I've been meaning to do a post updating on Julia, but the situation in Haiti right now weighs so heavy on my heart.  As tough as things seem sometimes having a child with cancer or with any illness for that matter, we are still the privileged elite.  I have carried that with me since the day they found Julia's tumor.  As I walked the halls of the hospital, I couldn't help but feel humbled by the expertise and care that surrounded us and was offered to my child.  When our children need medical help we can get it for them.  I cannot even fathom what it is like for the millions of parents in the poorer nations of the world who are helpless to do anything for their suffering children.

Before the earthquake this past week medical facilities were all but nonexistent in the nation of Haiti.  In light of this tragedy they are truly desolate with crush injuries, head wounds, broken bones, and open gashes.  They can do nothing about it, except pray.

Watching all of this has been extremely difficult, but with knowledge comes responsibility.  So many people have opened their wallets to help.  There are many established organizations poised to make a difference- the Red Cross, Compassion International, Doctors Without Borders, and Partners in Health, to name a few.  But money will not fix all of these problems.  Time is against everyone in this situation- heat, lack of food and water, disease, infection.  Logistically the country lacks basic infrastructure even in its peak form- communication lines, roads, power grids, etc.

So what can we do? The simple answer really is to pray.  It sounds so trite sometimes, but there is power to move the universe in the prayers of God' people.  That is no small thing.  There are so many needs to lift up....

• wisdom for decision makers trying to make the impossible happen in hundreds of little daily decisions
• logistical miracles in transporting supplies and specialists
• rapid delivery and operation of inflatable hospitals, mobile clinics, and hospital ships
  
• deep spiritual endurance and refreshment for those on the front lines offering help with rescue, recovery, and medical needs
• for those still trapped Lord, we cry out for mercy and miracles
  
• supernatural relief from pain as thousands suffer extreme trauma without medical help
• endurance and faith for the millions with no options
• trust and faith in their fellow man as they bear the long haul
• comfort and peace for the millions traumatized and now homeless
  
• God's presence in the heart of those offering help and in the lives of the Haitian people
• Lord, replace their fear, pain, and despair with HOPE
  

So as I lift up prayers for Haiti it is hard to not feel guilt over the privilege of our lives.  While hundreds of thousands of people were dying and suffering, we were enjoying an afternoon playing games and reading stories together.  It just doesn't seem right.  "God, please show us our role, each one of us, in Your plans for Haiti." We know first hand the power of intercessory prayer.  Throughout Julia's cancer journey, we have had scores of friends, family, and strangers interceeding on our behalf.  Those very prayers carried us during some of our hardest moments.  It is a power that can be felt.  As I see these images on the screen from Haiti, I am trying to pray specifically for those I see.  I may not know their names, but God does and He does care about each one of them.  Our faith and prayers are a powerful force, that so many disregard.

**************************

So, overall we have been doing well.  The kids have remained healthy.  We are still laying low while Julia has the port.  Simple illnesses will still land her a hospital admission and it just isn't worth the risk.  We have had a few outings that have lifted everyone's spirits.  Our church's MOPS group was kind enough to invite us back and allow Julia to sit and play in the corner of our meeting (with her movie and headphones).  It was a welcome step for us to life after cancer.  I have been able to resume Bible study at night and have been so blessed by it already. 

We have taken some small steps in (re)potty training.  Julia has done well.  Some days she has been in underwear for 5 hours.  It all seems to be coming back to her pretty easily.  Unfortunately, she is still struggling with major bowel issues.  Months of incorrect functioning have left her with the inability to really control the situation at all.  This is a mess (in all respects) when it comes to potty training.  I talked with Ms. Diane at the clinic and she wants us to double all the meds she's on and really clear her out and attempt to get her back to more normal functioning and then try again.  She said it is hard to pinpoint a cause for it all.  Julia's received chemotherapy, she's had radiation to all of her abdomen, and she had all of her lower organs removed examined and repositioned during her surgery.  All of those cause problems that contribute to this, but none of them necessarily have fixes.  Ms. Diane is consulting with GI so we can discuss it at her next appointment and we are doing are part at home.

We also got her blood counts back from her clinic visit in early January.  Her red blood counts and platelets are holding the same, but her white blood count and ANC have actually dropped since December.  This is discouraging to hear.  We know the process takes six months or more, but were hoping to stay the same or move forward.  We continue to pray that the low counts are not a permanent side effect of the chemo and do what we can to protect her from germs.

Her next appointment will be January 28th for x-rays, ultrasounds, labs, and possibly a pre-surgery consult for port removal.  We continue to pray for complete healing and the absence of any anaplasia cells in her body.  Her first set of scans were to determine the success of surgery, radiation, and chemo.  This will be her first set in the absence of cancer- killing treatments.  Please continue to pray she is NED (no evidence of disease) and that everyone of those cells is gone from her body.   

Clinic Day

Sorry it's taken me so long to update.  Thursday we were back at the hospital for Julia's monthly clinic appointment.  We've come a long way from the trips in sleeveless dresses.  It is bitterly cold here, like the rest of the country.  Only somehow we haven't had snow! It seems like a waste of cold air.  How can it be in the teens and not snow!

Anyway, Julia was okay with going.  She whimpered about putting cream on her port, but knew we had to do it.  She was excited to be going to see Ms. Karen.

Julia has been much more likely to wear her hairbows lately.  When she was bald it seems people were more careful about calling her a boy or girl.  But now with the short hair she is called a boy constantly.  No amount of bows, dresses, pink, or skirts convinces people.  It breaks my heart to see her so upset.  I wish I could hang a big sign over her head or something. 

She had fun playing trains and blocks and was excited when Ms. Karen peeked in to call her back.

 

Her port flush went well.  She was a trooper and it flushed with no trouble at all.  They drew her labs, but we haven't gotten the results yet.

Then Nurse Diane came in for her physical.  It was so great to see her.  She hasn't done her exam since October.  She was so cute when she came in cheering that it was her turn.  There's a baby in the clinic and Julia that they compete over seeing and today she got Julia :) All these doctors and nurses are so near and dear to us.  Everyone was pleased with how well Julia is healing.  She has been healthy and out of the hospital for two months now.  She has gained 6lbs since her surgery and diagnosis.  Her hair is coming back and her color has improved tremendously.

They still don't have any real answers to her bowel issues.  They can be chemo side effects or side effects of her abdominal radiation.  There is no way to really know and nothing that can really be done about either one.  We will continue with the meds and they told us to try other OTC products to find a remedy that works for her in hopes of slowly weaning her off of it all.

They also discussed her port.  They feel comfortable taking it out as long as her scans on January 28th are clear.  The reasoning being she has now been without chemo drugs for three months, so if any anaplasia cells/tumors remain they would be growing in this time.  At this point the risks of the port outweigh the benefits (ie. line infections) They are trying to get her an appointment with Dr. Pranikoff on the same day as her scans.  Once he has seen her and done her preop exam, she can have surgery any Friday for the next 4 weeks. So if everything looks good on her scans the port could potentially be removed on February 12th.

 

Before we finished Ms. Diane mentioned potty training.  Julia was trained a year ago before all this happened but has been in diapers since she was diagnosed.  They want her to work on getting out of them.  She asked Julia if she was ready for big girl underwear again.  Her reply, "No." Aren't you tired of diapers? "No." What kind of underwear do you want to wear? "I don't."  Alrighty then.  So wish us luck this week.  It will be a work in progress since she seems to have little control of her bowels lately and is going 6-8 times a day without realizing.  Should be fun for all.  We tried it for an hour tonight and she went to the bathroom and peed 4 times in an hour.  This may take a while...

Note to self...

Never underestimate the creativity and initiative of a group of preschoolers.   The innovation grows exponentially!


Exhibit A:  A 6, 5, and 3 year old playing outside in freezing weather in January will not find it at all unusual or inappropriate to soak themselves with the hose.  The crazy part is they were not at all cold or upset about being wet.  They just didn't like that they were dripping when they walked.  They were so completely soaked in water. Their pants, socks, dresses, coats, etc. were all saturated and dripping like a faucet.

The kids were playing in the garage and driveway riding their bikes.  It has been bitterly cold so we were happy for the slightly warmer sunny day for a break in cabin fever.  As we cleaned up in the kitchen, they came in the open door dripping all over the floor.  We couldn't help but laugh in astonishment.

I so wish I had a picture, just for the memories and to show them when they're older :) 

I asked Carter later what happened...
 
"I sprayed Lily with the hose because it was her turn."
"For what?"
"A free shower. She was offering us free showers with the hose."
"Why did you turn the hose on in the middle of winter?"
"Because we were using it to water the flowers and plants that were dead in the yard."

"Of course."

I love their cooperation and creativity.  Oh, to be a child again- so carefree!

Out of the Mouths of Babes (Costco edition)

My apologies to everyone in the meat section of Costco yesterday.  Our shopping trip went something like this...

Carter: (loudly) "Mom, what did they kill to make this?"
Me: Crabs.
Carter: "What did they kill to make this?
Me: Chicken
Carter: "What did they kill to make this?"
Me: Salmon.
Carter: "What did they kill to make this?"
Me: Pigs.
Carter: Pigs? How?

Don't worry, we didn't go there.  The interesting part is he is not opposed to eating animals for meat.  He just wants to know all the details.  Oh my.  Just not at the grocery store, restaurants, or dinner table please. I am liking the cold produce refrigerator more and more these days. No hard questions :) I can stand the cold.

A Walk Down Memory Lane

I cannot believe it has been six years since we brought this tiny little bundle home to join our family...

Carter William

Born: January 2, 2004   6lbs9oz, 19in

It seems like just last year we were savoring the precious blessing that made us parents...

 He was a happy, social, and bright baby who made everyone smile...

 

 

The first grandchild and great-grandchild on my side of the family, he was showered with attention and devoured it easily...

He was 1 before we knew it...

 

His interests came early.... balls, trucks, sports, books, tools...

 

 He turned 2 and became a big brother.  He cherished the role and adores his sweet sister...

 

 Always there to comfort and entertain her...

 

Sharing his loves and teaching her to do all his favorite things...

 

 She was happy to oblige and soon became his biggest fan...

 

He was born on a very special day, his Mimi's birthday, and has kept her on her toes since the day he was born.  They will always be birthday buddies and cuddlebugs...

 

He turned 3 and jumped right in to Awana, soccer, swimming, gymnastics, tee ball, and kindermusik.  He is a bundle of energy, excitement, and ideas- always planning or organizing something.

 

 

His laugh is contagious especially when he's playing.  You were a smart, athletic, and outgoing 4 year old always eager to jump in to an activity (or organize it!) and learn something new about the world... 

 

He rarely sits still (might he fall asleep), but when he does, he sleeps soundly...

 

 Only to gear up for the next days events...

 

 

You have always been an incredible big brother and this past year you have risen to the challenges of cancer- giving up everything you knew as normal and instead praying for your sister, comforting her, reading her books, soothing her cries, keeping her company, bringing her things, helping her deal with treatments, talking with her, and carrying the burdens and stresses on your little 5 year old shoulders.

 

I am so proud of how you've handled it all. Being five isn't supposed to be this hard.  It makes me sad to look back because I feel like we missed your last year being 'little'.  You have matured so much this past year and are growing up right before our eyes.  I still cherish the fact that you fit perfectly curled up in my arms and if I really want to I can still carry you easily.  I cherish the fact that we homeschool and can spend our days together learning, playing, exploring, and just being. I'm just sorry you've had to learn about cancer so young and spent your days thinking about surgeries, radiation, port flushes, chemo, and germs... instead of playdates, kickball, playgrounds, and storytime.  It doesn't seem fair, but I know God has a bigger plan for all of us.

Carter, you keep us all on our toes from morning till night- playing sports, reading books, playing games, reenacting, pretending, talking, building, imagining, exploring.  At times it is exhausting and we all look at you with exasperation.  But never stop being you.  You are full of drive, passion, and determination that will serve you well in life.  You are a natural born leader and rule follower.  You thrive on competition and sports.  But most of all you love the people around you and make everyone feel included.  Your tender heart for your family and friends is such a blessing.  Your growing faith and knowledge of the Bible is exciting to see.  God is planning great things for you and I am inspired every day to be a a better mother and person because of you.  I am so thankful God chose me to be your mom!

Happy 6th birthday sweet boy!!