Kidney Struggles

A quick medical update...

As a single kidney patient there are some unique challenges to life- lots of water, no ibuprofen or nsaids, frequent labs, prompt treatment of any and all UTIs, and no contact sports- to name a few. It also means whenever you leave the peds office your parting gifts look like this...

Peeing in cups is the norm in these parts. Stickers are for sissys.

In November I checked in with Julia's urologist about some concerns we were having. She has been released from their service for about 6 months and has not had any problems. I mentioned to him that Julia is still in diapers at night and nowhere close to getting out of them. She pees very large volumes multiple times a day. She is constantly thirsty and begging for water, despite drinking 80oz of it every day. She dehydrates very easily. He was concerned and sent us to nephrology. Believe it or not kidney cancer patients don't routinely see nephrology, until there is a problem. So now was the time.

There are several conditions that came to her mind- diabetes insipidus, pituitary hormone production issues, kidney hormone receptor issues, etc. They did a baseline of labs to rule some of these out. They also did basic labs and made comparisons to her labs from her oncology physical in October. As a shock to all of us Julia had a UTI! The upsetting part was she has had it since the beginning of October when she was seen by oncology- 8 weeks ago!! The doctors and nurses that reviewed her labs missed it. It was the first time in 3 years I didn't request a copy of everything. Needless to say, her nephrologist was not happy at all. She was immediately put on cipro. When we checked her urine again at the end of the medicine course, they found blood. We are happy to say that now the UTI and blood have resolved. The tests they initially performed have not shown anything troubling, so we are currently awaiting her mid-January follow up to find out what the next steps are going to be. If this is just the way she is made, we can continue to adapt, but of there is some underlying problem we hope to be able to address it and preserve her single kidney health. Praying we can get to the bottom of all of this.

Beads of Courage Celebration

Brenners had a Beads of Courage celebration to introduce our new hospital bead.  Julia was also given a special bead by our friend Katye from Kisses for Kate. They each have one of the beads on their string and it reminds Katye to pray for Julia...

It was a fun day for the kids with lots of cool bead stations. They got to weigh and measure...

They were each able to design their own dream bead that an artisan will make into a bead just for them!

There is also a new sibling bead sponsored by Macy's...

Our precious friend Rima was the guest speaker sharing her story with the crowd. She is battling aggressive ALL with PH+chromosome. Last winter she suffered a near fatal bout of meningitis which caused her to have a stroke leaving half her body paralyzed. She has fought back and by the healing grace of God is still here with us today and has made remarkable strides through rehab.

Krispy Kreme brought yummy doughnuts the kids got to decorate themselves...

The Beads of Courage program put together a holiday video this year. Here is the picture we sent. You can watch it here. (Julia is at min 6:06)

Thank you Beads of Courage and all your sponsors for everything you do to recognizing the unbelievable bravery of our little warriors. You are doing so much to make their battles a little easier and reminding each of them just how very strong they are inside and how proud we are of them.

From Julia, With Love

Julia is definitely the artist, card maker,writer, and encourager in our house. I love the birthday cards she makes for her friends. Here are a two recent treasures...

Peter and the Wolf

We have season passes to the Winston-Salem Symphony Discovery Concerts for Kids.

 

We had been to several last year and they do such an amazing job creating meaningful events for the kids. Conductor, Robert Moody, really has a gift for working with young audiences. The first one of the series was Peter and the Wolf. The symphony has recently partnered with Brenners Hospital and brings a young patient to guest conduct each event. The first one was our own, Rima!! She did such a good job!

 

 Before the concert begins, there are demonstrations, instrument 'petting zoos'...

and chances to meet the cast...

The music was wonderful as always and the drama troupe very creatively brought the story to life. We loved the hunters' weapons... trombones!

When we came out the air was warm, the sun was setting, and the fall trees were in their peak. It was like a snowstorm of leaves. The kids jumped in and a huge impromptu leaf frolic ensued- such fun!

Arts Evangelica

This year Julia has joined a new dance studio-Arts Evangelica. It has been such a blessing to us. They are a ballet company that also teaches jazz and tap. The girls are taught to glorify God with their dance as an act of worship. Every year they put on a classical ballet that has been adapted to make it God-honoring. They also have a discipleship and mentoring program where older dancers are matched with the younger ones and they are also given opportunities to serve in the community.

We have loved every moment so far. All of her teachers are amazing women and such a great influence. Julia has loved ballet, tap, and jazz. They learn the traditional dance discipline as well as worship dance. She also loves that her friend, Hailey, is in some of her classes...

I love the monthly opportunities to observe their classes...

It is an inspiring place to be with beautiful artwork and scripture and praise music and uplifting words pouring from every room.

Julia in Ms. India's ballet class...

Pretending to be falling leaves...

One of the company members performing for the girls...

Thank you Arts Evangelica for giving Julia a place to grow artistically, emotionally, and spiritually.

Vinny's 9th Birthday!!

October 9th was a very special birthday. Our sweet friend Vinny was turning 9. This may seem like something ordinary, but Vinny is anything but ordinary.

In his 9 years he has had cleft lip and palate surgery, open-heart surgery, AND battled rhabdomyosarcoma (an incurable soft tissue cancer) for over half of his young life. He has been on hospice twice and had to be released from their service because God was not done with him yet. He has 3 documented miracles in his medical history that have brought so many to their knees before God. His cancer has relapsed 4 times and he has fought back with more surgeries, chemo, and radiation than any of us could ever imagine. He has reached the lifetime limit for many drugs and treatments. He has a national and international network of friends and supporters. He has inspired incredible acts of service and love in others and has lived his life as a true warrior.

In September, Vinny was admitted to the hospital yet again and took a turn for the worse. The doctors had exhausted their treatment options and sent him home on oxygen and palliative care, anticipating just weeks left at most. But God had another plan. On September 30th Vinny celebrated and hundreds came out to join him and thank God for his amazing life!

The weather could not have been more beautiful. After tremendous rains, the sun shone down in all its glory.

The kids dressed up in their favorite Star Wars gear...

The magician was a huge hit and kept the kids on the edge of their seats!

Big sister, Desi...

The same boy who doctors thought might not make it to the end of September spent over an hour jumping in the bounce house!!! He is truly a miracle and the toughest person I know! He and his girlfriend, Lola...

Julia and Leila (both Wilms' survivors from Brenners')- they are two peas in a pod!

Opening lots of fun surprises- LEGOs!! and money for his trip to Legoland the next week.

 

He was so sweet and gracious for everything he received. Such a good host!

We love you Vinny and are so blessed to celebrate this amazing day with you!! 

You are a little miracle and we thank God for your life!

As I type this, 2012 is coming to a close and Vinny is at home on hospice, surrounded by loved ones. It seems God may be calling him home soon and his perfect healing may be coming. Our hearts break at the thought of not having him here with us, but we are so proud of his tremendous fight and all the lives and hearts he has touched here are on earth. Please pray for our little hero and his family and friends. You can follow his caringbridge here and join his facebook group here. Thanks for your love!

Football Doubleheader

As expected, Carter is loving football season. He moved up to the next age group this year and is playing for the Chargers. Daddy is an assistant coach and both are enjoying the practices and games every week.Last weekend was a washout, so this Saturday was a doubleheader.

Carter doesn't really have a favorite position and loves playing both offense and defense. He was a flag-grabbing machine yesterday. He kept the pressure on Jaxson the entire half.

with tackle after tackle...

He had a few receptions come up just short, but finally connected with the QB...

and took it all the way in for a Touchdown!

In the end they lost the first game by one point and won the second. Great game Chargers! You guys all worked hard and gave great effort.

And Saturday night we enjoyed a great NC State football game on TV. Coach O'Brien has proved yet again that when you need a done right, overnight- call in the Marines. As a USNA graduate a retired Marine, he takes leadership and character very seriously. He brings in Navy Seals and Marines to speak to his players. Apparently the Marine last Friday night made a difference because NC State exhibited tremendous effort, strength under pressure, and teamwork to upset #3 Florida State. Go Pack!!!