1st Annual WALK 4 OUR KIDS

Walk day arrived with beautiful warm sunshine.  The day could not have been more perfect. We were beyond thrilled when 437 walkers came out to support our foundation. We raised over $36,000 for our foundation!!!

All of those dollars will go to help families from Brenners' Hospital Pediatric Oncology unit.  We help meet physical, financial, emotional, and spiritual needs in any way we can. Seeing so many people coming out to support our kids was so humbling and exciting. Kids can't fight cancer alone and we are here to do whatever we can to help them and their families.

We were so touched to have our friends join us...

I am happy to say that Haley was feeling well enough to attend and was out of the hospital.  She startedthe morning singing 'Lean on Me'...

I was asked to speak to at the kickoff and had the honor of remembering 12 of our Camp Brenner angels.  It never gets easier, but we will never stop fighting because of each of them.  For them we will press on, fight the fight, live, love, laugh, and hope...

...for Brandon, Kate, Daniel, Elizabeth, Brett, Caleb, Devan, James, Alex, Krystal, Alyssa, Zanae, Marissa, Holly, Emily, and so many others... too many.

Brett's dad, Preston, led us in prayer.  That is angel Brett in the left corner photo...

Krystal got the crowd movin' with some intense warm ups...

 Then it was time to walk... for all our fighters, survivors, and angels...

 Carter and Julia were excited to do the walk with Vinny and his dad, Charlie.  Vinny and Carter are two peas in a pod...

I was so touched that Ms. Robin and her husband came out to join our team. Julia and I met her when we visited one of the Feeney's stores to hand out a walk poster.  She was moved by Julia's story and joined our team! 

Carter and his buddy Vinny crossing the finish line...

Haley, cheering on all the runners and walkers...

Nurse Nancy and Ann from the clinic.  We love you guys and were so happy you came out today!!

It was such a joyful, fun morning- full of smiles...

I love seeing all the t-shirts...

The 9th Floor's own- Mr. Jeff.  He always brings the fun wherever he roams :)

The day was such a success! We couldn't be happier.

We are in awe of the beautiful weather, the talent of all our volunteers, the sponsors that stepped up, the dreams come to life, the generosity of hundreds of people, the enthusiasm of the crowd, the support for the kids, and the privilege of being a part of something so mush bigger than all of us.  God is up to something great and we are in awe of His great work!

Reality Check

Today Julia had her follow up appointments with Dr. Pranikoff in surgery and Dr. Fortunato in GI.  We started in the surgical clinic.  It is always busy and this morning was no different- so may kids of all ages with serious medical struggles.  It is always a sobering moment.

The older lady sitting behind us turned around to comment on Julia's curls.  It happens constantly, so we are all very used to the drill.  After exchanging the normal pleasantries, she asks, "Well, she's not sick is she?" Why would you ask that? We're sitting in the waiting room at a large children's hospital to see the surgeon, so chances are...   I gave her the brief two sentence answer and she turned around and started crying.  Then she said, "Well she's too beautiful to have anything bad happen to her." WHAT?!?

These conversations are so hard.  They are painfully awkward for everyone involved.  Sometimes they give me a chance to share our testimony or offer real HOPE, but today, just awkward. So strained conversation over, we went back to Go Fish.  Much lighter fare.  "Carter, do you have any ferrets?"...

Dr. Pranikoff was happy to see us and hear that things are going well.  The appointment was scheduled so he could change out her cecostomy tube and button.  He wants to train me to do it so that I can take over from here and she will be released from surgical care.  I waited to tell her until today because I didn't want her to have extra anxiety about it.  She was not happy and cried most of the way to the hospital, but calmed down while we waited.  He asked how far out we were from her surgery.  When I said 8 weeks, he commented he didn't like to change them until 12 weeks.  Okay... I vividly remember him saying 2 months, and his nurse, and the scheduler, and the paperwork, and they set this up. So, Julia got her wish- no tube change today.

The appointment was not wasted because she has developed granulation tissue at the cecostomy stoma site over the past week. It was a quarter-sized growth of very vascular tissue growing out of the opening. It grows out from the inside of her abdomen.  He wanted to cauterize it and reduce it down with silver nitrate.  So they applied the emla cream and we waited for it to work.  She was not pleased about the procedure and screamed through it.  Dr. Pranikoff was very skilled even with a moving target. The tissue is now gray and shriveled and "better" from what he tells us.  So now we go back at the end of June for the actual tube change.

We had some time to kill in between appointments, so we stopped in to see Ms. Stacey.  Julia was happy to add her beads and tell Ms. Stacey about her upcoming birthday.  We also ran in to Moses and his mom.  Sweet little Moses is back in daily radiation again! After a 28 day course and months of chemo, he is now getting 15 more days.  Daily sedation and radiation is so tough.  Please pray for little Moses.

The kids were thrilled about their cafeteria lunch.  Seriously, they sat and ate for almost an hour.  We 'heart' that place! Then we had our afternoon appointment in GI.  Dr. Fortunato was pleased with Julia's progress so far.  He approves all the tweaks we have made in the process, but he said he doesn't want to change much else.  We can start giving her oral miralax every other day instead of every day but the rest is going to stay the same.  He said this is a long, slow road but we are heading in a positive direction. He wanted to hear about Dr. Hodges recent input and plan.  They both have similar styles and work very closely together.  He wants to make sure everyone is in agreement.  He checked the site and was pleased with what Dr. Pranikoff had done this morning.

Then came the reality check.  He had done some research into current cecostomy data.  They are not commonly used, so you have to seek out the information.  In most cases they are used for patients with spina bifida, Hirschsprung's disease, etc In these cases they are a solution to a problem.  In our case we are hoping it is more of a therapeutic option on the path to healing and restored functioning.  Based on the current numbers, 70% of cases show healing that allows tube removal.  The average duration of tube placement is 48 months.

It took me a minute to do the math.  (Six hours of waiting in exam rooms with both kids starts to fry the brain cells after awhile.)  That's 4 years.

We had always been told around 2 years.  It just hit me like a ton of bricks that this is our reality.  For a LONG time. These nightly 2 hour procedures and being housebound every evening are our life. For Julia, sitting on the toilet for an hour and half to two hours every night before bed is going to remain through her childhood. The end is not near. It is hard to even wrap my mind around. Julia still occasionally asks us how many more days she has to do this.  Any idea how to convert 4 years to days for a 4 year old? Can't be done.

So for now we are continuing to pray for complete healing.  We are believing in that 70%.  After all her cancer has a 60%  5-year survival/cure rate and we are believing in that number, too. I will always have a love/hate relationship with these numbers.  We want to know them, but we struggle to live with them. Continuing to believe that our God is bigger and can do anything. 

Our dear friend Vinny is a living testament to that truth.

 He has survived cleft lip and palate surgery, heart surgery, battling an incurable cancer (rhabdomyosarcoma), relapse to the lungs, tumor in the bladder, time on hospice, and now a growth in his brain.  This kid is living proof that things are not always as they seem.  Not just once, but multiple times.  His days have been numbered by man numerous times, but God has another plan.

Grasshoppers Stadium Field Trip

We had another fun field trip this week. A behind-the-scenes tour of our local minor league stadium. Our family has such a love affair with this place so we were excited to see some more of it.

 We started on the hill where Yogi and Miss Babe were out for the morning play session.  These dogs are serious about their fetching.

Julia of course had her Yogi and Babe dogs with her for the event...

We had a tour of one of the skyboxes and the party deck...

Then we headed down to the lower levels to see the batting cages...

and team clubhouse...

After seeing the rest of the stadium, the kids were given time to play in the kids' area...

After a picnic lunch it was time to go home.  We stopped back in the office to say goodbye to Yogi and Miss Babe.  They were both sleeping soundly in the hallway.  When they heard the kids the looked up to check them out.  At the ripe old age of 5, Miss Babe would rather sleep, but Yogi being the pup that he is- came to greet the kids.  He was so sweet and patient with them.  After a few minutes he disappeared down the hall.  We weren't sure what had happened.  He reappeared with his baseball in his mouth. He wanted the kids to play.  They happily obliged...

Looking forward to the next home game.  Go Hoppers!!

Make A Wish Festival

Last weekend, we attended the first annual Make-A-Wish Festival fundraiser in our area.

Sadly, it poured much of the day, but the sun did finally come out for the last half. They had lots of fun games for the kids and several characters walking around- Sparky the fire dog, and some of the zoo animals...

Julia was so happy to see the ponies.  She spent a long time talking to them and learning about them from their owner.  She can't wait to have a pony at her birthday party.  This has been her dream for so long.

It was a wonderful day to be a part of.  We had time to get to know many of the MAW volunteers and really talk with them.  Many wanted to hear our story of her cancer journey and also her MAW trip.  It was exactly one year ago that we were in Florida making memories to last a lifetime.  Several other families from our hospital were there, too.  It's always good to have time away from the hospital when you can catch up and have fun together.

As part of the ceremonies of the day they granted the wishes of several children on the stage in front of the crowd.  Julia was so sweet, she said, "If I go up on the stage will they let me go back to Florida again?" Sorry sweetie, it's not your turn, but we will go back again one day. I love hearing her recall all the fun we had.  Both the kids still talk about our trip on a regular basis.  Such an incredible healing and happy time.

After the wish presentations, several music groups performed.  We had been looking forward to seeing our precious friend Haley perform.  Sadly she ended up in the hospital and couldn't attend.  When the band started their set, they sang a few songs and had everyone singing along and dancing.  Then they stopped to talk about Haley.  The crowd went crazy in support.

The tears started to fall.  When they started singing the song she was going to perform, I couldn't hold it together anymore.  I am so angry at cancer right now- that she had to miss her performance today, that we have lost several cancer friends in past weeks, and that there have been more relapses. Some moments the burdens on this road feel so heavy.

Julia Update

It has been awhile now since I have updated how things are going for Julia which is a good thing because it means we have had more good days than bad and more "normal" days than medical.

She has healed well from her cecostomy surgery. It was a rough surgery and long recovery with many more complications and hurdles than we had anticipated. Two months later, she has healed well and we are adjusting to this new life.  The flushes are getting easier bit by bit.  We are all very accustomed to the process.  It is time-consuming.  Start to finish takes about 2 hours and we have to be home every night before bed for her to do it.  It can be restrictive at times.  I would love to be able to just go for a walk in the evenings or play outside. Unfortunately, we are tied to the house and the bathroom. We infuse the medicine first, then during the 20 min wait she takes her shower.  She then spends the remainder of the time sitting on the toilet.  We have found ways to make it easier with TV, snacks, special toys, etc.

She does not cry as often or resist the process, but she still dreads it.  It is a burden in her life that she cannot escape.  The actual process causes cramping and stomach pain, so she has a lot of anxiety from anticipating the process.  It is definitely a defining time for her.  She counts her days in "flushes".  'How many flushes until our vacation?', 'How many flushes until my birthday?', 'How many flushes until we go to Sea World again one day?' If we tell her something will happen in a certain number of days, she instantly converts that to flushes. I wish so much I could take some of that from her or give her a break, but it is a part of our life we just have to accept.

The biggest help in all of this has been the assistance she receives from KidsPath.  They have all been such angels to us. Susan, our home health nurse comes to the house every few weeks to assess her, check in with all our medical concerns, and help us make adjustments as needed.  It is such a blessing to have those kind of resources at your fingertips.     

The kids look forward to their counseling sessions with Kate and have been working through the "big feelings" they have that they can't label and/or don't know what to do with. They have been learning the tools to cope and trying to find out why they feel the ways they do.

They look forward to the sunny afternoons they can run and play in the gardens in the back...

such a magical place...

It has also give us tremendous insight into our daily struggles. After a recent session, Kate asked me if Julia was having trouble sleeping.  I said yes, she hadn't slept through the night a single time in the 6 weeks since her surgery.  She was not surprised because of the anxiety and fear she was experiencing.  It was like a light bulb went off.  As a parent in these situations you just accept and deal with things as they come.  I hadn't really stopped to think about why she still wasn't sleeping. After a few sessions, some play therapy, a storybook bear that talks while she falls asleep, and a new possum friend...

I am happy to say she is sleeping through the night again.  Hallelujah! for all of us!

Now why (out of a huge assortment of animal choices) my daughter is so attached to the possum is beyond me?! He goes with us everywhere and dangles from her arm like a purse. Tres chic!

He really likes Feeney's fro-yo and Julia thinks he's having a great time because he's from the country and has never been to the city before.

I am happy to say Julia is finally dancing again! After several weeks off to recover she adamantly refused to dance her first time back and told us she was quitting.  I am so thankful she reconsidered...

It has been so good for her to be back with her friends.  Every day she gets to play and feel normal is so healing. I dropped her off at Annmaries' the other day during a meeting.  As we pulled up she said, "This is my first time getting to stay.  Carter always gets to stay, but I have to go the hospital. I can't wait to see Claire!" It is the little things in life that mean the most...

And simple things like coloring and hopscotch...

 

And a day will never go by that I don't look at those crazy curls on her head and thank God for her healing.  We were told by all her doctors and nurses that when she lost it to chemotherapy, it wouldn't come back curly.  But it did! Every single one of those curls came back and they are a constant reminder to me of all that God has done and continues to do in all of our lives. We are still praying for her complete healing and believing that one day her body will regain its function again, but for today we are just thankful she is here with us.

As she eagerly counts down the days until her 5th birthday (5 more flushes), she has apparently decided to end her preschool years with a bang.

Both the kids have been fairly compliant and seldom do things that shock us too much. Just this week Julia did it twice.

She has taken a liking to autographing things she finds around the house... with purple Sharpie marker...

Not trying to hide it, I guess?

And she has recently discovered that she can plug the drains when she wants to fill the sinks with water.  Apparently she failed to realize how important it is to turn off the water.  I happened to walk in the bathroom 5 min after she brushed her teeth and stepped into an inch of water.  In such a short amount of time the entire floor was flooded and all the drawers and cabinets had filled to the top with water...

So thankful I went back in the bathroom before going downstairs for bed!

 

Thursday we go back to the hospital.  She spends the morning with the surgeon for a follow up.  They will change out her cecostomy tube for the first time and train me to do it at home from here on out.  Wish us all luck.  I can't see she is going to be a big fan of all of this. In the afternoon we go back to see Dr. Fortunato in GI for the first time since before her surgery.  I am very interested to get his feedback on everything so far and learn the next step in this process.  In between we will check in with Stacy in ChildLife.

And Saturday is our 1st Annual 5K Walk 4 Our Kids for our Kids of Childhood Cancer Foundation for Brenners'.  We are so overwhelmed by the generosity of everyone and the success of this event.  Every dollar raised is going to make so much of a difference in the lives of these families.  It is not too late to join! We'd love to have you on our team.  It looks to be a beautiful sunny day :)