Dixie Classic Fair!

Every year we look forward to the fair. It is our annual celebration of another year OT (off treatment) for Julia. After a week full of hospital appointments we can't wait to celebrate N.E.D. with a day long trip to the fair. This year did not disappoint! God gave us bright sunshine and clear blue skies.

The pig races were a big hit this year. We actually watched them twice!

We watched two other great shows and then visited the Percheron horses. They are huge- standing over 18 hands tall!

Left Julia just itching to ride a horse. I guess a pony will have to do. Julia loved little Chicco...

Then we headed to the petting zoo...

 

A few games for Mr. Competitive...

A visit with the Batmobile...

Yummy treats...

And as many rides as they could enjoy all afternoon...

Their favorite by far was the bungee jumping...

Carter mastered double flips!

So thankful for an amazing day! Thanking God every day for the precious gift of life and health. We will never take it for granted and never give up the fight advocating and fundraising for all those who have left us way too young. 

Hospital Day Tuesday

After a full day Monday at the hospital we had to be back to do it all again on Tuesday. The kids were happy to find out Ms. Betsey would be there, so we were able to do some art projects when we arrived.

Then we grabbed some lunch in the cafeteria- we all love that place! And went up to check-in to the cardiology clinic. Love this guy...

Julia was a great little patient. All of these tests are such old hat for her. She's been doing them since she was two and has always just climbed right up and quietly cooperated.

Her tech, Tammy, was wonderful and did a great job with the echo and was very sweet to both the kids. We are still waiting on the results. Hopefully Monday the clinic will call us with them.

Many people have asked why the echo's are needed. Julia received 3 chemo drugs. The doozy drug in the trio was doxirubicin (an anthracycline). This class of drugs are cardiotoxic at every dosage- not a comforting thought when we used to pump it into her port directly leading to her heart. These patients are at 15 times the risk for heart failure, 10 times the risk for heart attacks, 9 times the risk for strokes, and valve and conduction issues. The highest risk group is 3 year old females, which is where Julia falls. Congestive heart failure is staged on a continuum A thru D. Our kids are automatically Stage A just for receiving the drug. The damage is a cumulative process usually becoming an issue at 10 or more years after treatment. As the heart is remodeling itself the ventricular walls thin as their dimension increases which raises wall stress. Fractional wave shortening is usually seen beginning at the 10 year mark. The annual monitoring is done to allow docs to intervene as it progresses from Stage A to B, after that it becomes progressive and nonreversible. This is one of the many reasons we desperately want safer treatments for our kids. The chance of congestive heart failure with other chemo drugs is <1%. We have to find other options for anaplastic cancers.

After cardiology we checked into the GI clinic for Julia's follow up for her cecostomy tube. The combination of the new computer system and Dr. Fortunato's always busy schedule led to a three hour wait. The kids did great and were enjoying their playtime. As the afternoon drug on I decided to take Carter upstairs and drop him off at the Arts Connect class we were going to later. Julia and I continued to wait and read books and played games. When Dr. Fortunato arrived Julia turned into a mess. No idea where it came from. He is the sweetest man and has wonderful rapport with her. He has never done anything even mildly painful or invasive in his office and most visits are primarily talking. She apparently was done with all things medical and was angry her brother was upstairs without her (wish she would have shared this with us). It made for a very stressful appointment and she never did cooperate. Very frustrating when we have to wait so many months to get in with him and he is the one helping us with her cecostomy. Ugh. Good thing she had counseling at KidsPath the next day to process these feelings and work on more constructive and cooperative outlets.

The good news is he was pleased with where she is right now and wants us to continue to try and lower the dose of the medication we put into her cecostomy every evening. We are still hoping for her colon to regenerate and heal completely. Data shows that 70% of kids regain full function and this takes an average of 4 years. We are 18 months into this process. So we will continue to chart and tweak and pray for continued healing.

Before leaving we were able to catch the end of the art class upstairs. Once a month Arts for Life holds a class for the patients and their siblings with a separate class for the parents where we can talk and support each other. It was a sweet time with Rima and Wesley's mom and some much needed encouragement after two long days. So thankful for our Camp Brenner family. 

Scan Day Results

Our day started early, too early. As you can see somebody was not ready to be awake. When I went in her room to get her up, every time I pulled down the covers to dress her, she pulled them right back up. Sleeping is good though when your NPO.

We checked in and headed back to triage with Nurse Rhonda. Julia is now twice the height and twice the weight as when she started this process! Then (age 3)...

 ...and now (age 6)!

Then it was time for labs. Julia was dreading this part, but acting very stoic. I was hopeful that the lack of resistance would bode well. When we walked in the lab, both kids squealed. Ms. Betsey has been framing artwork to adorn the walls and both the kids had pieces on the wall. Last October they carved their own animal blocks and did a series of prints.

Nurse Pat was out for the day, but her substitute was great. She was very talkative and Julia seemed to warm up. She decide where she wanted the blood drawn from and how she wanted it done. Things were going great. No tears at all. Unfortunately, one finger wasn't going to fill all the tubes, so she had to pick another. She was not pleased and made it known, but in the end she complied. I am so proud of her for being able to do this. Procedures never use to bother her at all, until that one traumatic hospitalization and it has been an uphill climb ever since. I am happy to say that her counseling with Kate, her prep before hand, and the prayers of so many brought her victory today. She headed in to show her bandages to the giraffe family.

Then we had her oncology physical with Nurse Dianne. They are thrilled with how healthy she is and how much she has grown. One of our biggest concerns was her recent bouts with shingles. Over the summer she has had it three times. None of her doctors have been able to figure out why this is happening. Shingles can occur in children (5% of cases). The unusual part is she has never had chicken pox or the shot and her blood titers for the varicella virus are 0. Nobody can explain it. They run along a dermatone nerve line from her spine around to the center of her chest. They cause her a lot of pain, but unfortunately there is very little we can do because as a single kidney patient she cannot take antivirals, antiflammatories, or nsaids. So for now the debate continues. Five doctors are weighing in on it right now and awaiting her next outbreak. The rest of her physical went well. Her labs did not reveal any signs of concern or immunity issues which was a big relief.

While I finished up all the discussions with her nurses and doctors, the kids were off to find Ms. Betsey and get started on the day's art projects. They made some really cool projects that we will pick up tomorrow. It was like reunion day in the clinic today. Aside from all the clinic staff, we ran into Rima, Bradley, Lilly, and Nurse Marcia! It was great to catch up with everyone. It is so cool how God arranges that!

We headed downstairs for Julia's radiology appointments. It is always interesting to see what orders actually made it into the computer. It used to be a problem with the offsite scheduler, today it was the computers. The entire hospital went paperless last week and was put on a new computer system. Nothing worked today. We couldn't check in, the lab orders didn't come up, you couldn't pay, and nobody could add anything. Fortunately everyone's attitude was just to keep going and figure it out later. Works for me! Calista was busy today, but Julia had a great ultrasound tech.

Her chest x-rays are never ordered, but we always manage to get them done. Thanks radiology for using your common sense!

Then it was time to wait for results. With the computer issues, I figured this might take awhile. We found ways to pass the time with Ms. Stacy in the playroom.

Julia was excited to string her new beads for the day. I love this shot because you can see Nurse Marcia jammin' in the background. She made up a different dance for every song on the toy little Emily was playing with- so funny! This is why we love you Marcia!

We spent time catching up and hanging out with Nurse Karen, too. Two sweet cuddlebugs!

 

 ...who go WAY back.

At 2:30pm the results finally came back and we are thrilled to say she is...

Such an amazing gift of grace! We are so relieved and excited she continues to show no new signs of cancer. (Just to clarify the cancer vocabulary... leukemia (and other blood cancer patients) go into what is called "remission" after their treatments which means the level of cancer cells in their body is 0. For solid tumor kids it's not so black and white. Cancer cells could be growing anywhere and there is no lab test for that. So instead they use a combination of scans-x-ray, ultrasound, CT, MRI- depending on the sites being looked at and in every attempt to use the least radiation possible. N.E.D. means No Evidence of Disease. This states that based on what was visualized there does not appear to be tumor growth. Another option would be Stable- meaning dead tumor tissue or tumor not growing. We would love something more absolute. The nurses and I joked today that one day our kids will come with a touch screen with an app for cancer growth- instant reassurance, no radiation...maybe one day.)  

So we were free to head to ballet and celebrate. We enjoyed a yummy dinner from Bethany and Tim and Daddy and Julia had a special date night because she was so brave today. As I finish typing this everyone else is sleeping soundly and I am soon to follow. 

Tomorrow we head back to the hospital. Julia will have her echocardiogram to check for heart damage from the doxirubicin. Yes, that lovely "hawaiian punch chemo" drug. When the nurses have to suit up to touch the bag of medicine you are pumping into your child's heart, you know you aren't messing around. One of the main side effects of dox is heart failure. The most supscepitible group are little girls who were treated at the age of 3- yes and yes. So tomorrow we will start in the cardiology lab and then head to GI to discuss Julia's cecostomy and protocol changes with Dr. Fortunato. Followed by another art class with Ms. Betsey :)

Thank you to everyone for your kind words, prayers, and encouragement today. It means the world to us and we can truly feel your intercession. The day went so smoothly and the outcomes were the best we could have hoped. Aside from that we had the chance to reconnect with so many of the staff and patients who mean so much to us and reach out to some new friends in the trenches now.  

Scan Day...

Today is scan day.

Every six months our hearts and minds stop for a moment in time. The scanxiety comes back, sometimes without us even realizing it. I have had several people over past weeks stop to let me know they were praying for this upcoming day. My tears took me off guard- I hadn't realized my heart was so aware.

We have to be at the hospital at 8am for labs and triage. Then down to radiology at 10:30. Followed by her oncology physical and then the wait for results.Praying for the gift of NED, but trusting that if God needs us to see anything He will reveal it. Julia has also had several health struggles over the past few months that her doctors have been discussing and we will make decisions on tomorrow. Please pray for wisdom in all of these for everyone involved.

And please pray for Julia- painful procedures are still a hurdle for her because of her post-traumatic stress issues. We have been working with her to prepare for tomorrow and pray that her heart is full of peace throughout the day.

Haley... forever 16.

One of the hardest parts of being a part of the pediatric cancer worlds is all the loss. I'm not sure why it happens this way, but at our hospital most children seem to earn their wings in the summer months. Last summer 12 children we knew passed away. This summer 9 more. Every loss hurts so deeply. It is hard enough to be a child fighting cancer, but to lose your friends in the battle alongside you is devastating. Watching cancer take children from their parents and tear apart siblings cuts deep in a place that never heals.

Camp Brenner is full of heroes- so many courageous cancer kids. God gives these children such strength, wisdom, compassion, and courage. They are all heroes to us. But every once in a while God sends a special child to be their hero. Haley Parker is one of those.

 

Haley is one of those kids who lights up a room. As soon as you walked in you knew she was there and you were drawn to the light and joy that radiated from her. She is a child of God and she takes that calling very seriously. She has an amazing gift for sharing her faith and HOPE with everyone around her no matter their age.

All the kids know her and love to play with her. She can relate to a toddler just as easily as a teen.

The young ones love to play and color with her. (She is a big coloring book fan!)

 

 And for so many of the older teens Haley is there to help them walk through the cancer world and face their fears, struggles, and pain with grace and God's power.She even had the idea to have a prom for all the teens in treatment and her dream came true...

God gave Haley some amazing tools to accomplish her mission on earth. Aside from her radiant beauty and smile, she has an infectious laugh, playful spirit, and the voice of an angel. Haley is never afraid to burst into song- wherever she may be. The clinic, the art room, the halls, her hospital room are always filled with this incredible voice. And sometimes if you were lucky enough Mr. Colin is around to provide instrument backup. 

And we love all the chances we get to hand her a mic and let her shine at parties...

 

fundraisers...

 

 

Haley's battle with stage 4 Ewings' Sarcoma was long and grueling. The massive pulmonary damage and metastisized cancer made breathing difficult and singing a miracle. She even sang at her mom's wedding and led worship at her church! Haley endured 22 months of treatment and this past May was told she did not have much time left. She spent the next weeks in the hospital being every bit Haley making all her many visitors laugh with her funny voices and skits, songs, art, and precious spirit.

She spent precious time with her siblings, parents, family and friends...

But in the end, God called Haley home and healed her Himself in heaven on June 20th (her sister's birthday).

There are some people in our lives that are so vibrant it feels impossible to imagine they are gone. Haley is one of those. It has been so hard to accept the fact that she is not still here. Every time we are in the hospital a part of me hopes she might still be there. I can still hear her voice singing as if she were standing right here. I know heaven's choir gained an amazing angel. I fully expect the clouds will part one day and Haley's beaming face will be singing down on all of us. 

On August 31, we had the privilege of celebrating Haley's birthday with her family and friends.

Her mom, Donna, passed out balloons to all of Haley's little friends.

We prayed together and sent them flying.

And as they drifted up the balloons seemed to dance in a choreographed design. They all gathered together in the sky and stayed that way until we couldn't see them anymore.

Haley, we are so proud of you for the way you fought your own battle with determination and never failing HOPE. But even more incredibly we thank you from the bottom of our hearts for all the little warriors you helped along the way. No matter how bad you felt you put on a smile and a song and took off down the hall to brighten another child's day. You so boldly shared your faith in love with everyone you met, young and old. But most importantly you lived out the faith you professed in everything you did. Rest in peace, Haley... forever 16.