Walk 4 Our Kids

When we were thrown into the world of childhood cancer our eyes were opened to a reality that so few people are aware even exists.  When it comes to kids with cancer, sympathy comes quickly and hearts are touched, but their is a false complacency that exists because everyone seems to think someone else is taking care of it.  Surely when your child has cancer you can get the help your family needs, pay for their medicine, and pay your urgent bills.  Surely someone at the hospital throws holiday parties for the kids and recognizes birthdays, Christmas, and the like.  Surely there are fun things going on for all the kids who live inpatient for months.  Sadly, this is not always the case, unless someone has followed the lead of their heart and stepped out to do something.

When we became part of our local childhood cancer family we were shocked by what we found.  As Julia went through treatment we quickly bonded with the other families in the trenches with us.  It is an amazing family bound in the deepest parts of our souls.  We support and encourage each other, live daily life together in the throws of treatment, advocate for each other, cry and scream together, carry each others burdens, and share hugs and glances that speak a thousand words and emotions we could never utter.  The bonds run deep.  As we looked around the suffering was obvious is the faces of the kids in treatment and the families walking alongside them.  It didn't take long to realize for many the needs go even deeper.

For some, they cannot take the time off work to be with their child who has to live in the hospital.  Some cannot afford gas, daily parking fees (yes, we pay every time), and meals.  For some, it is the medical bills.  Even with the best insurance the copays and medications alone are overwhelming.  For some, it is having someone to talk to when they first hear the diagnosis or someone who understands when the battle is raging on.  For some, it is a listening ear and someone to pray.  For some, it is simple necessities like money to pay for a heating bill so they can stay warm at home.  For others, it is just a need for some cheer and joy in the hospital.

From the earliest days of Julia's diagnosis we knew God was calling us to this place.  We began to follow His leading in our moments to find the ways we could make a difference, no matter how small.  He has faithfully put dozens of people and opportunities in our path and on our hearts.  We knew there was so much more to be done.  When our dear friend Sarah approached us about joining the board of a new non-profit foundation, I knew it was our next step.

The Kids of Childhood Cancer Foundation was formed by several oncology parents, an oncology nurse, and a Make-A-Wish volunteer.  Our purpose is to meet some of the unmet needs of the families in treatment at Brenner Children's Hospital and to bring joy to the daily lives of the families inpatient.  Some of our activities include Christmas parties and other theme nights for the inpatient kids, delivering Olive Garden meals to families on the floor, paying urgent bills, stocking the inpatient family room with food and snacks, and sending a teenager and his family on one last vacation before he passed away. All the funds stay here at our local hospital to help the families of Brenner's Pediatric Oncology.

We are excited to announce our 1st Annual WALK 4 OUR KIDS 5K to raise funds for our foundation.  The walk will be a family-friendly event on May 21, 2011 at Fourth of July Park in Kernersville.  Registration begins at 8am.  The cost is $15 and all funds will go directly to helping the families. Registration fees will go up to $25 after May 7th.  We would love to have you join us.  You can start a team of your own or you can join TEAM JULIA.  Even if you can't attend the event, you can still join our team in support of this wonderful cause as a 'Virtual Walker'.        

Our kids cannot fight cancer alone! Help us be there to support these amazing little warriors and their families. Fighting cancer is hard enough.  Together we can step in to fill in some of the gaps and share HOPE with families in need.

Family Time Easter Sunday

The forecast for Sunday was cloudy rain, but we awoke to bright sunshine and the warmth lasted all day. Such an unexpected gift.  Reminds me of the women who went to the tomb thinking they knew exactly what they would find, BUT GOD.  A very small daily reminder of a big truth that we cannot putr our God in a box and assume we know what to expect. Hallelujah!

After church, we all changed clothes and headed to the awesome new park in my parents' neighborhood.

It truly is the most amazing playground I have ever seen!

Everyone was on on the fun.

 

 

Then we went back to my parents for the family egg hunt and Easter dinner...

It was a beautiful afternoon to be outside.  We enjoyed hanging out on the patio catching up and laughing as usual. Our family has faced many obstacles this past year with loss, cancers, divorces, and tough times.  As we ride these waves together, family truly is the ties that bind.  The house may have been turned into a mini-hospital with all of Uncle Jeff and Julia's medical equipment, but we keep on going- pushing through to the next step.  Giving thanks for the blessings and bearing the burdens. This is not the way any of us dreamed our lives would have gone, but God's faithfulness continues to reign in our lives daily.

The meal was wonderful.  Not sure how we found room to eat more food after Saturday, but everything was delicious...

And we spent the next few hours laughing, reminiscing and just enjoying each other. For the kids that meant, up in a tree...

There were also some pickup basketball games...

Look at Uncle Jack!! He's got quite a jump shot! I have to give him some credit because just moments later he fell over Justin and hit the pavement... with his face.  A quick trip to the ER (it's really quick when your wife works in that ER!) and seven stitches later and he was back at the party.

Poor guy :(  It has been a great weekend all around.  The house was full of dozens of people all weekend and the food, fun, and fellowship were flowing freely.  Our cups overflow.

Easter Sunday Morning

The kids were eager to start the day on Sunday.  We read several accounts of the Easter story on Saturday night before bed.  Both Carter and Julia know the events of Easter well.  Anderson has really learned them this year, too. The day started with sweet treats at breakfast...

 and Easter baskets of surprises...

 there were lots of smiles...

 and fun...

Then we all started to prepare for church.  This was Carter's first year wearing a real tie.  I expected some resistance.  He is not the type who enjoys dressing up and always chooses comfort over fashion.  He didn't say a word. Julia watched intently as Daddy tied it...

Then so sweetly, she walked up behind him and kissed his head...

Anderson, Beth, and Erik...

 Happy Easter!!

The kids discovered the bleeding heart flowers on our way out and were fascinated...  

 

Our family's church did a wonderful cantata this year of the journey to the cross.  Half the choir members are family members and we were blessed to be able to be there today.

 The kids were really mesmerized by the entire service.  Anderson praying...

My cousin Justin portrayed Jesus.  His role was very powerfully done.  Anderson was commentating as the events progressed...   "Judas turned him in."     "He's in the tomb now, but it's okay... only 3 more days"   "Then dancing in the pew, 'Jesus is alive again!!' " I must say it was hard to fight the urge not to join him.  We're not used to such a conservative service.

 Julia followed Aunt Joanne's lead and was conducting by the end...

It was a joyous and emotional celebration of painful sadness, sobering truth, and joyful good news.

He is Risen indeed!

Baby Shower Saturday

We headed up to PA on Friday to visit family.  Our Easter weekend started with a joyous celebration. The kids were so excited to help with the party preparations.  Who doesn't like a party? Anderson kept asking why we had to watch a baby take a shower.  We told him their wouldn't be a baby at the party because it was still in Erin's belly. His response? "You mean Erin ATE the baby?!"

My cousin Erin and her husband Michael are expecting their first baby this summer.  Carter and Julia were both in their Penn State wedding two years ago and we are so excited to see their family grow!

It is always fun to have a house full of family and friends.  The food was flowing- course after course.  We ate like kings and the fellowship was so sweet. It is such a blessing to celebrate new life as the family grows and grows.  We can't wait to find out in July if we're adding a boy or a girl. The kids were having a great time together meandering around the house and yard...

As the party was winding down we let the kids decorate eggs. This year we had dye and stamps.  Anderson was very partial to all his eggs being pink.

Carter preferred blue and Julia wanted rainbows. Aunt Renae lending a helping hand...

Mammy and her three little cuties...

Good Friday

A time to stop. A time to reflect.

 

Today is the day we remember the ransom required by each of us as sinners.  A debt that has been paid in full.  The longer I live in this world and the more I get to know my God the more incomprehensible this gift becomes.  It is hard to fathom the depth of Christ's suffering.  The brutality of it all is heartbreaking, but it was not the nails that held Jesus to the cross that day, it was His overwhelming love for each of us.

I hear the Savior say,
"Thy strength indeed is small;
Child of weakness, watch and pray,
Find in Me thine all in all.”

Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain,
He washed it white as snow.

For nothing good have I
Whereby Thy grace to claim,
I’ll wash my garments white
In the blood of Calv’ry’s Lamb.

And now complete in Him
My robe His righteousness,
Close sheltered ’neath His side,
I am divinely blessed.

Lord, now indeed I find
Thy power and Thine alone,
Can change the leper’s spots
And melt the heart of stone.

When from my dying bed
My ransomed soul shall rise,
“Jesus died my soul to save,”
Shall rend the vaulted skies.

Jesus paid it all,
All to Him I owe;
Sin had left a crimson stain,
He washed it white as snow.

For nothing good have I
Whereby Thy grace to claim,
I’ll wash my garments white
In the blood of Calv’ry’s Lamb.

And when before the throne
I stand in Him complete,
I’ll lay my trophies down
All down at Jesus’ feet."

These words flood my heart every time I sing them.  I have nothing to offer, but everything to receive.

Hospital Hamster Wheel

Our life has been so medically-centered lately and sadly, that trend has continued.  The past three days we have spent at various doctors and appointments.  Julia is so tired of me telling her every morning we are going to the hospital.  She is so done with all of this.  And the appointments recently have all been different than normal, so when she starts with her questions in the car of what is and isn't going to happen, I can't make her too many promises. Monday morning we went back to see Dr. Hodges after Friday's renal scan.

He has some concerns about everything that happened with her bladder after her most recent surgery.  Fortunately at this point things have stabilized.  Bladders don't like stress and Julia's has lived under constant stress for the past two years. The good news is the bactrim she takes every day is keeping the uti's and blockages in check.  And we are watching her closely and have all the supplies to cath her when needed.  He did not see any additional concerns in her renal study. 

Then we talked about her bladder size.  He was asking again what her bladder scan readings are when she is in the hospital.  They are consistently in the upper 700 range which means her bladder holds 4 cups of fluid on a regular basis.  When I said this his response was, "Oh my gosh, that's huge!" Not what you want to hear from your urologist.  He's supposed to tell me he sees this all the time.  His lingering concern is that she will lose the ability to consistently empty.  A stressed bladder stretches into a big, loose bag that loses tone.  He decided to wait for Julia to empty as much as possible and then scan again.

The good news is the reading then was 56, so despite its size she can still empty efficiently. We also talked about the fact that her bladder was this large at her first surgery, so the large bladder issue actually came before cancer treatment.  It's one of those things about her we probably wouldn't have known because we weren't looking. For now he feels comfortable with the status quo.  There are several more invasive tests he can do, but he doesn't feel they are necessary now, so we will press on.  We still need to have the colon issues under control for a year or more before he will start the bladder retraining process.

On our way home we stopped on the 9th floor to visit our buddy Vinny.  He has chemo again this week.  He and Carter have become fast friends lately bonding over Wii games, Star Wars, and all things lego.  Carter is one of Vinny's "happy thoughts" these days so we were excited for a chance to play, even if it had to be on the floor.  The kids didn't waste anytime jumping in...

After lego battles, it was time for some fooz ball.  It was a wild game of kids versus moms (who were also deep in conversation and distracted) with two balls. Not sure who won in the end but there were lots of laughs and goals scored all around. Then it was off to the playroom.  The kids had a blast with the Wii, action figures, and the race car sets.  While Sarah and I had some time to catch up with Ms. Stacy.  We actually had to drag them all out at the end when Vinny's chemo was finished.  Kind of crazy when you think about it, but we are so thankful they can bring each other that much joy, even in the hospital.

This morning we had to be back at the hospital-this time genetics. When I told Julia we were going back, she lost it.  It didn't help that Grandpa had arrived last night and was watching Carter while we were away.  Clearly "not fair", but couldn't be helped.  She started protesting the moment we got in the car and kicked my seat all the way to Winston-Salem.  The exact opposite of a massage chair.  I cheered her up slightly in the hospital with some YouTube videos.  A shout out to Anna and Lily- we were singing "The Duck Song".  They still love that :)  

The genetics appointment went really well.  It was initiated back in the fall when Julia had the suspicious spots on her lungs.  When making decisions about how aggressive to be with scanning we were taking into consideration her full diagnosis.  It was determined at that time that her LOH testing had never been completed.  It's supposed to be done in all cases, but because she missed being on study by two days and it was assumed she was not anaplastic- it was not done.  When we requested it oncology told us we had to go through genetics.

It was a long wait for an appointment, so Tuesday was the day.  they started with her Wilms' history.  Then we discussed all the major syndromes and chromosomal disorders associated with Wilms' tumors.  Then they took a detailed family medical history of both sides for 5 generations.  It was really interesting to see Dr. Haldeman-Englert and his assistant as they rapidly processed all the information- one on paper, one an ipad.  Their minds were buzzing with connections and possibilities they were picking up in different family lines.  It is a fascinating area of study. They will run chromosomal testing on Julia and also do full genetic mapping.  This will give us information we need as far as future screenings and supsceptabilities to certain conditions or cancers. He said he does not see any clearly evident syndromes, but the genes will tell us if the mutations are present.

Doing all of these tests obviously meant a blood draw.  I hadn't prepared Julia for this because I did not know it would definitely happen today.  As Tara lead us back to the lab, Julia figured out what was happening and dug in her heals. She put up quite a fight.  I had to carry her in. She kept insisting on seeing everything they were going to use so we went through all the parts and pieces and how they worked. With one arm tucked behind me,my legs around her body, and my hand around her shoulder, we were still having a tough time ensuring she would stay still enough.  Just about that time, one of the receptionists heard her screaming and came in to help keep her arm still. She actually did well with the actual procedure, it's just the anxiety that pushes her over the edge. That horrible IV start back in January has traumatized her still. Hopefully we can start to help her deal with this.     

As we were leaving, Tara said to us, "I just figured out who you are.  You're Julia with the beads!" Apparnetly the newspaper articles were forwarded to the entire hospital. Julia's bead have a new bag now.  Ms. Stacy let her pick one out when we visited Monday. She was very proud of her new "poke" bead on the way out. 

We grabbed a quick bite to eat from the cafeteria to take with us and headed out to pick up Carter.  then it was off to KidsPath for the kids' counseling sessions and Julia's appointment with her nurse.  They are both still doing great.  This week they both dealt with "big feelings".  They have a lot of them and there list of feelings are very different.  They made feeling volcanoes and worked on ways to express those feelings and vent the pressure safely. They also talked about eruptions that get us in trouble. Then they had the opportunity to release some of their big feelings. It couldn't have been more relevant.  They both have so many swirling emotions of anger, sadness, jealousy, frustration, pain, etc.  Any one of those is a lot for a child to handle.  Unfortunately, our life includes many of those emotions daily. It has really helped empower them to have a plan when things get heated or tense and to have tools to turn to like stress balls, art, pool noodle bats, balls to kick and throw, and words for what is happening inside. We still feel so blessed to see the kids and all of us getting the help we need to travel this road.

Julia's nightly cecsotomy flushes have been getting better.  She has become a pro at the whole process and was able to teach Daddy how to do it all by herself.  She is incredibly knowledgeable of all the things involved. We know give her the medicine, then disconnect the line and she gets in the shower for 20 min.  Then we reconnect add the saline flush and she sits on the potty for the next hour.  We have gotten her a padded seat insert and found a way she can watch TV while she sits.  We also give her snacks while she's in there to help pass the time and keep her sitting long enough.  We have made tremendous progress since the early days when she screamed throughout.  She still does not like it and whimpers from the pain at times, but she is much more accepting. And for that we are very grateful.

Now we will have a break from doctors for the next week. I had my own appointments, labs, and tests today. After a full series of xrays and 6 vials of blood I think we should be good for awhile. Praying for a peaceful reprieve on the medical front as we start to prepare for Easter.   

Spring Fever

Our house gets giddy when spring rolls around- for many reasons- but near the top of the list is baseball. We all love the sport.  It was such a blessing this Sunday to be back at the Hoppers stadium watching our favorite minor league team. The weather was perfect.

The ballpark food was yummy...

And despite a pretty dismal first half, the Hoppers got it together with some stellar baserunning and hitting.  They ended up with a big win full of exciting moments...

Julia was eager to see Miss Babe again as she delivered balls and fetched bats...

Carter wanted to play with the kids on the hill toward the end of the game.  While we were there a ball was hit over our heads near the gate.  Carter headed up to see with dozens of other people.  When he came back, he had the ball in his hand.  I asked him where he got it from and he said, "I just picked it up." I asked if someone gave it to him or if he took it from someone else.  He said, "no, it was just laying there and no one else picked it up.  He has an amazing attraction for foul balls.  This is his third in his lifetime.

After the game it was time to run the bases.  It's funny to see how much faster he gets every year.

Looking forward to a great season at the ballpark.  Go Hoppers!!