Road Trip!

Can you guess where we went this weekend?

We decided to head to Atlanta for the holiday weekend to visit family and the Georgia Aquarium.

(Those are real fish swimming in there!)

One of the amazing blessings of Give Kids the World is that the children become GKTW International Passport holders on the day they leave.  A variety of theme parks, attractions, and museums all over the world extend a free invitation to wish children and their families for the one year following their visit to GKTW! Such an amazing gift.  It was found that the wish trip had many healing effects on the children and their families. These benefits come from many things: the anticipation of the wish trip, the escape to someplace fun and magical, the memories made, and the ongoing reminiscing.  The GKTW passport gives families the opportunity to continue the process for an entire year!

Our little animal lover enjoys any kind of zoo or aquarium.  We have heard such incredible things about this new aquarium and it was all of that and much more!

At the first stop we were greeted by the sting rays and dogsharks in the touch tank.  This was one of Carter's favorites at Sea World back in May and now he was able to do it again.  We went back to visit them twice.

It still surprises us how at ease he is around these animals.  He just can't get enough of them.

 

Even Julia had her two fingers in the water this time...

Then we visited Georgia Explorer: Discovering Our Coast.  The kids loved the shrimp boat.  You could pretend to captain the ship and operate all the controls or pet the live shrimp in the tank in the back.  Just petting, not tasting :)  And they had slides and tunnels for the kids to climb through, too.

This lionfish, though amazing to look at, has invaded Atlantic coasts waters from the Pacific and is reeking havoc on the ecosystem with it's poisonous venom...

Then we had the chance to pet the horsehoe crabs, sea stars, sea urchins, and hermit crabs.

The fish and lobsters in the next tank were so active and entertaining.  There was so much going on, it was hard to know where to look.  Do you see the two fish dueling in the front with their mouths? The kids were shocked.  They decided they were definitely brother and sister by the way they were fighting.  I have to agree.

Then we headed to River Scout: Freshwater Mysteries.  There were so many creatures to see.  They do such an incredible job in the presentation to make you feel immersed in the environment.  You are surrounded by tanks on all sides.  And you are able to go into many of them- crawling through tunnels and into tree trunks.  The staff were great in teaching the kids and answering their questions.

 There were beautiful colors and patterns everywhere you looked.  Such a testament to God's masterpiece...

Then we ventured over to Cold Water Quest.  We were greeted by the hugest crabs we have ever seen!!

And a touch tank of sea stars, sea urchins, and anemones in the most breathtaking hues...

I love this fish and his "grandpa-grin"...

I love visiting aquariums and museums.  It's like books that have come to life to engage all the senses.  So much to observe, learn, and absorb everywhere you turn.  I also think it's so cool that even as an adult there are still so many new discoveries to make.  Did you know there are sea dragons? I've never even heard of them before!

 Then it was off to visit the penguins...up close and personal...

 And when we emerged we found ourselves face to face with these gentle giants.

One of the keepers did a great presentation for us that taught us so many new things about these amazing animals.  Did you know that they can nod their heads, move their necks, swim backwards, and change the shape of their head to express emotions? They respond to the sounds of the crowd on the other side of the glass and will come close to interact with the guests.  Julia wanted to hug them and apparently Beethoven was intrigued...

We stopped to eat at their delicious cafe.  They've thought of everything.  So many cool desserts...

After we ate, we visited the Tropical Diver tank.  It can be best described as stepping into the ocean.  From the side you can watch the hundreds of fish, numerous sharks, four whale sharks, manta rays, and others.

 

Then you step onto a moving sidewalk to travel underneath the tank and feel like a part of their world.  As you emerge their are several nooks in the wall where you can crawl in closer.  It is like they stepped into the mind of a child and enable them to do everything they wish to get a closer look.

These were garden eels in the coral reefs.  They are 18in long creatures that spend their entire lives in one location.  They slide in and out of their holes, but never leave.  It reminded me of Slimey, Oscar's friend from Sesame Street! 

 Then we made our way through the rest of the coral reefs.  Such beautiful fish and gorgeous colors.

We had an incredible visit and made some wonderful memories.  I feel like we only scratched the surface.  The Georgia Aquarium has SO much to offer, we definitely want to go back again.

When we headed out across the green, Coca Cola was putting on a free fair! It was like they threw our kids a party of their own.  So much fun to be had and a gorgeous warm day to enjoy it all.

 She shoots, she scores!

 Thanks Georgia Aquarium and Give Kids the World!! We had an absolute blast.  Thank you for making the memories and good times last even longer.  We are all so grateful for the opportunities given to us.  

These smiles speak volumes...

Father/Daughter Camping Trip

The last weekend in June, Daddy and Julia headed off for our church's annual camping trip for all the daddies and daughters.  She was so excited and has been looking forward to it for weeks.  She's never camped before, except for in our living room :)  She and Carter have been begging to go for quite a while now.  But you have to realize their idea of camping comes from NickJr and picture books.  We had a realistic conversation with them about the differences between the woods and home.  They both signed on.  We decided the church sponsored event with all her little friends was a great place to start.  Not to mention they do all the cooking for you :)  So the ladies were up first.

The morning they left, Julia was downright giddy! Such a happy pair...

I can't say it wasn't a little hard to send them off.  Julia has been my constant companion for the past 15 months and I can't say I don't feel a small hole when she's away.  But at the same time I am overjoyed that she is happy and healthy and able to participate in life again.  It is all so healing for her soul and encourages her independence again.

It was a nice break to spend some downtime hanging out with just Carter.  Those of you that know him can probably guess what that looked like.  We stayed in our pj's until the afternoon.  We watched documentaries on the Military Channel like Battle Rats: Iwo Jima. I have to say it was all very intriguing.  They really do a great job with these shows and more importantly Carter is learning what honor, duty, and sacrifice truly mean.  It is easy for little boys to be attracted to battle, weapons, and vehicles; but he is really getting the bigger picture. We played Battleship and LIFE. We organized our military gear.  We read books about sea warfare, naval history, military helicopters, etc. We ate random snacks.  And we finished off the day with swimming, friends, and yummy Mexican food. We had a really good time.

Off in the woods, they were setting up camp.  Julia couldn't wait to sleep in a real tent...

The fun started as soon as they arrived at camp.  The girls found a huge fuzzy caterpillar to play with...

I love these faces.  All the wonder and curiosity of three little animal lovers...

Thankfully they had a beautiful, sunny weekend to enjoy all the fun activities, like boating...

and swimming in the lake.  I love these faces! These two are like peas in a pod and they were having a blast...

In the woods there are always piles of leaves just begging to be jumped in...

Here's a shot of all the girls- big and little- heading off to play.  Such a sweet sight...

Dinner was spaghetti, smores, and homemade ice cream.  No complaints from this hungry little camper...

Followed by a rousing game of duck-duck-goose...

Then it was time to hit the hay...

They had a wonderful time together and everyone came home smiling and full of stories and happy memories.  They're already looking forward to next year! 

Health Update

Things have been interesting around here lately in the health department.

Julia had her 4-year old well check at the end of May.  It still seems so odd to me to go to these appointments.  When you've taken you're child to almost seventy "very not well" appointments in the past year, well checks are definitely a rarity.  It's not even a place I am really comfortable any more.  When the nurse starts the appointment and asks all the screening questions she asks at the end if we have any concerns.  "Why yes, actually, quite a list."  But all of our questions some how tie back to the cancer and cancer treatments.  And pediatricians don't really specialize in that.  They focus on the normal development.  We know her normal development is great, but she now lives under the big shadow of being a cancer survivor.

The good news was she has gained nine pounds since last year! She maintained and actually lost weight during chemo, so this was great to hear.  She has gained all of that in the last six months! I can actually see how that is possible.  The child eats constantly while awake.  Several other parents of oncology kids have said their doctors told them to expect the child to make up for all the food missed during chemo in the first year after.  That has definitely been the case.  After eating breakfast every morning at 8:30, she is crying and begging for food by 9:30.  After that snack and another at 10:30, she wants lunch by 11:30.  The afternoon is much the same.  I've become a walking 7-11 with food and drink available at all hours and all locations.  Cici's has become one of our favorite stops.  I have NO IDEA where this child puts 7 pieces of pizza, 3 breadsticks, 2 bowls of noodles, and a salad! But for $2.99, I'll take it.

The crazy part is she cries when we get in the car if I don't hand her a snack! She seriously must have a hollow leg.  Or maybe that's what's happening with all the empty space where they removed organs and stuff from her abdomen :)  Sorry, cancer humor.  

She has grown in height and weight and regained her color.  They did repeat her CBC to see how she looked after her ear infection.  She was still in the low normal range, but also had a bit of a head cold so we will check again in July to try and get a healthy level baseline. He said her abdomen felt great and her organs have shifted and settled into all the empty spots well.  Such a bizarre thing to have to hear about your child.  We are so thankful to be walking the road of healing with her.  Staying on the remission road is a gift we will never take for granted.

Things were going along well with everyone until one Saturday morning in June.  Carter had his last baseball game and end of season party.  He is normally awake before 7 on the weekends.  At 8:30 when he still wasn't downstairs we became concerned.  repeated attempts to get him to come down were unsuccessful.  When he finally emerged he was acting under the weather, but said nothing hurt.  As I was helping him tuck in his shirt I noticed his neck was swollen.  Not just a little, but visibly protruding on one side from jaw to shoulder.  I won't lie and say my mind did not venture down horrible paths.  That's life on this side of cancer.

We let him go to baseball and get his trophy.  He couldn't throw because moving his arm on that side hurt too much.  We knew something was wrong.  We headed right from there to the pediatrician.  She walked in the room, took one look at him and said, "Oh my gosh!"  Thanks.  You can think it but please don't say it.  She decided to do a throat culture, sure that he must have strep.  That would make sense.  Negative.  Time for the CBC.  His bloodwork actually looked great.  Good and bad.  Good because nothing is blatantly wrong, but bad because we have no easy answers.  She was at a loss for options, said it was probably viral and to bring him back if anything else happened.

He barely moved the next two days, the swelling got worse, he screamed if anyone came near his neck, but no other symptoms.  Then his neck started to really hurt and the pain was spreading up into his head.  So by Monday afternoon we were back at the doctor.  Dr. Ravenel reassured me he thought this was definitely an adenovirus and he would have a tough week.  He repeated the CBC and was satisfied with what he saw.  Without my having to say a word, he said, "I know exactly what your thinking and why you are here and I would do the exact same thing of I were you."  Thank you.

It was a long week.  He had several really rough nights of screaming and no sleep from pain in his neck, headaches, respiratory symptoms, and throat pain.  After a week he finally started to get better.  He did well for about another week and then started complaining of his ear hurting.  He has permanent tubes, so a traditional infection is not usually the case because the ear drains itself.  By the next day, the entire side of his face and pillowcase were coated with dried, infected fluid in the mornings.  I know.  Gross.  Time to head to the ENT.  Dr. Kraus took one look and said he had a severe infection with pulsating fluid- yuck! He cleaned and vacuumed it out and put in a wick to help direct the ear drops.  A round of zithromax, some strong pain meds, and antibiotic drops and we will hopefully be good as new.

Last weekend Julia woke up on Sunday morning and threw up.  She seemed fine after that, but by the afternoon had upper respiratory symptoms.  Hopefully just a cold.  We've spent the week doing sinus rinses, decongestants, cough medicines, tylenol, and humidifiers.  We were hoping to be almost done.

Today she was really fussy and clingy.  We have her back in pull ups because her bowels are still a mess.  She is re-potty trained to pee in the potty, but is only successful with the bowels about once a month.  We were doing panties, but the poopy underwear was such a mess, so we put her in pull ups.  She has done great with consistently peeing on the potty.  Wish I could say the same about the other.  It has been a real stumbling block for me to keep my patience in this area.  It is a constant issue all day every day.  She has no control,  the smell is horrible, and it's a mess to change.  GI has been great with her and so patient but they keep telling us this process takes lots of time.  By time, they mean years, potentially.  I really have to pray to wrap my mind around that one.  It makes me feel so guilty for getting frustrated when it's not her fault.

Today I was helping her use the bathroom this afternoon and the pull up was soaked.  Red flag #1.  When she peed her urine was completely pink.  Red flag #2.  For the next few hours every time she peed she held my leg and screamed.  Red flag #3.  So back to the pediatrician.  Thankfully Julia peed in the cup readily and saved herself a catheter.  Her urine tested positive for blood, leukocytes, nitrites, and white blood cells.  The doctor was concerned as to why she is getting UTIs.  This is a huge "no-no" with having only one kidney.  Her urologist has told us that many times.  So hopefully the bactrim does the trick.  The culture will be back in a few days.  And they want her put back in diapers.  So basically we are starting over... again... for the third time.  Ugghh.  I brought up her bowel issues, but he had nothing to offer.

This is one of those times I get so frustrated.  Once your child is out of treatment you are really nobody's patient.  The pediatrician does not specialize in cancer survivor care and every appointment begins with me giving all the medical info and answering all the questions- very one-sided.  Julia sees the oncologist every three months, but is not in active treatment, so you get farmed out to different specialists.  Sometimes this works, sometimes not.  It's such a fuzzy area.  I've heard so many other oncology families say this same thing after treatment.  Most pediatric cancer protocols are cut (surgery), burn (radiation), and poison (chemo).  The protocols are very outdated, but the best science has right now.  There are long term issues and side effects from these harsh treatments, but the primary focus was saving your child's life.  After that, the rest is very murky.  So we will continue to press on and advocate for the best care we can get for her.  She goes back to oncology and GI in two weeks and most likely urology again. Hopefully we can get a plan in place for at least some of these issues.     

If anyone out there has had experience in this area of survivorship and has advice, we would love to hear it.  Anything would be helpful at this point.

Wishes for Skye

We have been following the story of Skye, a five year old who has relapsed with intial stage 1 Wilms tumor, 3 times. 

She has lost both her kidneys to the cancer and is now on dialysis.  They are out of options for treating her and her family is having to make some horrible decisions for their little girl.  Skye has a map of the world and marks the locations where she receives mail.  If you happen to live in any of these places, please send her a letter or postcard... 

By way of a great suggestion from a wonderful lady, we now have maps of the US and the world on our living room wall.  There are thumbtacks marking each of the states and each of the countries that Skye has received messages or mail from.  There are a lot of thumbtacks!!! BUT we are missing several states and obviously only have a few countries.  I would like for her to see all the states at least filled up while she is still with us.  If you know anyone in Washington, California, Nevada, Wyoming, N. Dakota, Vermont, New Hampshire, Delaware, Rhode Island, or Alaska or anyone overseas  - please ask them to drop by and say hello so we can fill her map while she can still see it.  Currently, we have Canada, Costa Rica, Dubai, New Zealand, Australia, UK, and the Phillipines on her world map.  THANK YOU!!!

Skye Getter

PO Box 33
Lewisburg, OH 45338

Sometimes the little things are really the big things in life.

Breakthrough

We had a bit of a breakthrough with Carter recently.

Let me start off by saying we have been blessed with very compliant children.  They tend to be mature, responsible, and compassionate (most of the time).  We do not struggle with major discipline issues.  Carter has always been a rule follower and truly desires to please us and do the right thing.  He is generally positive and pretty level and rational about his emotions.  So much so that when I talk about him "losing it" people tend to doubt I'm serious.  But with Carter, out of control means just that, out-of-con-trol.  It tends to be fueled by hunger, fatigue, stress, or exhaustion.  The trigger is usually minor but he loses it for hours, unable to get it together and we cannot soothe him.

This happened on a recent evening.  We had eaten dinner early and were enjoying some quiet family time.  Billy suggested surprising them with a trip for ice cream.  They had been asking us for awhile, but it is so hard to justify when you pay the same price for one cone as a whole container at the grocery store! So we decided to go ahead and do it.

When we went to leave Carter started asking for something else to play with in the car.  We asked him kindly to stop.  When he didn't we gave him a final warning and told him to get in the car.  He pushed his luck.  We stood our ground and he stayed home with me, while Daddy took JuJu for ice cream.  He was a screaming heap on the floor.

It was one of those moments I really needed to stop and think or this was going to escalate into the ugly range. And then it would likely be my fault for reacting out of anger and impatience.  I took a moment, prayed, and decided not to get emotional.  I kept my cool, validated his feelings quietly when he wailed them with passion down to his toes.  After a few minutes he realized we weren't budging.  He continued to wail and I continued to clean the kitchen.  About ten minutes later he suddenly stopped making noise and was sitting at the craft table in our kitchen.  He had filled a small cup with water, gotten out the paint,s and pulled out a large piece of paper. Hmm.  He asked me how to spell dumb.  I told him and continued to wash dishes.

He finished painting.... 

...sat back and looked at it for a moment.  I could read it from where I was, but didn't say a word.  Then he balled it up and threw it in the trash and walked over to where I was standing.  "Mom, do you want to play a game?"

I couldn't have been more proud! I know, that sounds absolutely crazy.  I am proud of him for regaining his composure in his own, identifying and expressing his feelings in an acceptable form, and finding a way to move past it.  Yay, Carter! I know you don't always like the rules we enforce, but I'm proud of you for realizing we mean it and aren't backing down.  I'm sure it's not the last time you'll think I'm dumb, but I hope you always remember how much I love you.

It was a good lesson for me, too.  I realized that you are listening to our words of wisdom.  You are not the type to immediately concede and calm down, but the words are sinking in.  You don't like to sit around talking about emotional topics, but you remember everything we say.  I need to remember to speak the truth calmly with you and then just let it go.

I saw this very thing happen again today.  Last night, as we were brushing everyone's teeth before bed, you started complaining about something not being fair.  I mentioned that life didn't work that way and nothing was ever going to be equal and fair. But this is not the end for us.  Our reward is in heaven, not on earth and all of this will just fade away.  Nothing more was said and everyone went to bed.

Today we were playing at a friend's house.  As you all played upstairs there was some disagreement about whose turn it was with different dress-up items.  Then I heard you say, "We can't always get what we want and be first.  This isn't our reward anyway.  We have to wait till heaven for that."  Always listening...

Saddle Ridge Ranch VBS

You may have wondered where we've been lately.  Well, now you know.

We've been on the ranch.

This past week was VBS at our "other" church.  The kids' involvement in Awana over the past 3 years has really made us feel at home at LifeCommunity Church.  We have made some dear friends and fallen in love with their children's ministries.  Last year, was Carter's first VBS experience and he had the time of his life.  He cried the last day when he found out it was over.  Julia was in the hospital that week getting a blood transfusion and recovering from chemo.  It brought me such joy knowing he was in such loving hands.

This year I was elated to be able to send both kids AND volunteer to teach.

Oh, the difference a year makes! I was the Rec Games teacher for the PreK department.  We had over 50 precious and excited little ones who kept us all hopping all week long! Over 480 kids in all attended VBS this year!

The motto for the week was...

...and it makes my heart smile hearing the kids say this (okay, actually they yell it) all the time now.  I pray these words are sinking in deep :)

The music was great, as usual.  We had been listening to the CD all weekend getting ready and when we walked into Worship Rally Valley the first day, it all just came alive

I love that they teach the kids the sign language to go with the songs they are singing.  It brings such power to the words and becomes such an act of worship to sing them.  By the second day, we were all singing and dancing around the clock.  It brings tears to my eyes to hear my kids spontaneously break into song with lyrics like these...

No matter what anyone says about me,

God says I am who He made me to be.

I am who the great I AM says I am

I am one of His greatest creations.

He says that I am remarkably wonderfully made.

I am who He says I am.

He says I am made in His image.

He says I am one of His children.

He says I'm His friend and He loves me so.

I give Him all of my praise cause I know!

I encourage you to listen for yourself.  You can hear many of the songs right here.

The games they created for the week were really great.  My helper, Jesse, and I did 3 games each day with our five groups of kids.  Lifeway does such a great job creating their resources.  I will definitely be playing many of these games again.  I can see a ranch-themed birthday in our future.  Here are just a few snapshots of all the fun we had...

Lily's face speaks for all of us.  We had some serious fun :)

There was also a serious note.  Every year, VBS does a service project for either local or international missions.  This year they chose to help Brenner's Children's Hospital.  It has been so near and dear to several of the families in the church, they wanted to help a place that has helped so many of us.  Each morning in worship they had a different family share their story in worship.  It was the first time we have shared Julia's story in front of a large group like that.  The morning of our turn, was the same morning Ellie Potvin earned her angel wings from cancer.  As broken as my heart felt, it meant so much to be able to feel like I was doing something to help the pediatric cancer family.  It is a torch we will continue to carry.

It was so powerful to share what Julia has experienced, the life of a child on chemo, the role God has played in her battle, and the plan God has to use each one of the kids at VBS to touch the life of a family at Brenner's.

They collected offering and gifts to donate to the hospital.

In the end, they had collected almost $1,000!!! 

AND all these toys, books, and DVDs....

There is nothing quite as powerful as God working through the hearts and lives of His little children.  So many families will be changed by what happened here this week and so many hearts have been touched.

Including one very special to us.  On Thursday, Carter made the decision to accept Christ for himself!  I was so blessed that he was able to pray with Ms. Flemania who has known our family since Carter's very first day here as a 3 year old.  We pray this is the first of many decisions he will make to live his life for the God who so wonderfully created him.  We are so blessed to have him in our family and watch God's plan for his life unfold. 

At the end of the last morning we all meet for one last time in worship.  We were sad to see it all come to an end, but at the end Pastor Rick made us all laugh when he wallowed in the mud like a little piggy...

VBS is such a highlight of everyone's year it make you wish it happened more often, but after teaching this year, I totally understand why a week is enough.  We were all so exhausted by the end of Thursday.  A full week of being at church at 8am and then being "on" with classes full of kids until noon just wears us all out! It will definitely take a few days to recover :)

Ya'll come back now, ya hear!! 

Next year we head to the Big Apple June 20-24.