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.

Kisses for Kate Ball

I had the honor last weekend of being asked to speak at the Kisses for Kate Gala. 

Precious Kate was a leukemia patient and went through treatment at Brenner's with Julia. She fought a long, courageous 3 year battle before earning her wings in September 2010. 

Her family, godmother, and friends lovingly stayed by her side every step of the way and helped Kate's dreams come true every chance they could. Kate had so many big dreams for herself, her family, and all the other kids fighting cancer that foundation was born to fulfill these wishes. They have done some incredible things for so many families. One of Kate's dreams was to bring the Beads of Courage program that she had used at Duke during her bone marrow transplant. In March 2011, the legacy of her dream came true.  Her parents, Susan and Joe were there with Kate's beads...

 

Julia was one of the many in attendance that day for the kickoff.

Julia's beads gave her an amazing voice to talk about the battle she had been through and to tangibly tell her story.

We had no idea how much those beads would come to mean as her struggles continued and she faced GI surgeries, tough procedures, daily medications, tube changes and tissue burns, and counseling for her PTSD issues.

She was so proud to be sharing her beads and her story that night.

Her strand now measures 8 feet and contains almost 300 beads!

The ball was Kate's idea. She wanted to have an "after treatment party" where the girls wore gowns and tiaras and the boys wore 'tortillas' (tuxedos). It was a magical night that we know Kate would have loved- amazing decorations, beautiful dresses, music, dancing, a delicious dinner, incredible auction and raffle gifts, and lots of friends and family.

Ms. Stacy introduced the Beads of Courage program and how it is used at the hospital.

Then I had the chance to share what this program has meant in our lives and how it has helped Julia to cope with her ongoing medical struggles and find the courage to do the things she dreads and take pride in her accomplishments.

There is also a sibling program that Carter has used that recognizes some of the complex emotions and experiences of the siblings of these cancer warriors.

It was an very emotional night and many tears were shed as we remembered, honored, and looked forward. There were several other cancer warriors there, too. The bonds between Camp Brenner families runs deep and every glance, hug, and encouraging word speaks volumes. We all talked a lot that night about the emotional scars of this world- the post-traumatic stress issues, the long term effects and surgeries, the losses, the relapse scares. Sometimes it just helps so much to share the burdens with people who are carrying the same ones.

We also had the chance to meet a lot of new people who came out to support the foundation. I was touched by how many people shared their hearts, struggles, prayed with us, and were changed by what we shared. Thanking God for the amazing opportunity to share what He has been doing in our life.

The evening continued with auctions, raffles, music, dancing, and fun...

By 10pm, Julia was all partied out...