Hi everyone.  Since my last post Bodi has had another swallow study.  It verified that he is indeed aspirating when he is drinking from a bottle and from a sippy cup.  They tried different nipple sizes as well as thickening the liquid to a consistency they called “honey”.  No matter what they did, he would aspirate the liquid.  There is no explanation thus far as to why he is doing this.  His speech pathologist and oncologist want him to see an ENT (ear, nose and throat) doctor to see if there is a problem with his anatomy.  That appointment is tomorrow.  Then on Wednesday he has another appointment with the speech pathologist.  I believe she is going to teach me how to train him to drink from a sippy cup. One sip at a time.   I believe they are going to try to wean him from a bottle. I will update after this week’s appointments.

Bodi has been quite the jet setter.  He and I traveled to West Texas to visit my sister and her boys.  We had the best time.  Bodi LOVED hanging with his cousins.  They got along great and even got into some mischief together!

  
They had us cracking up and we cherished every single minute.  Those moments are really what life is about.  I can’t tell you how much seeing Bodi being able to be a regular baby means to me.  There really are no words.  The time that my sister and I were able to spend together is what I have wanted to do forever.  We just hung out and laughed our butts off at nothing!  It really was the best medicine and revamping of my spirits that I desperately needed.

 Then Bryan, Bodi and I went to Florida to visit Nana and Poppy!  Nana was afraid that he had forgotten her over the last 3 weeks, but as soon as he saw her in the airport, he lit up with a huge smile.  Needless to say, he did not forget them!
All of Nana Sue and Poppy’s friends were so excited to meet Bodi.  They have been praying for him and really supporting our family with lots of love.  It really makes us happy to see those who have been praying for Bodi actually get to meet him.  They fall in love with him and are genuinely so tickled and he loved meeting them!  He had all of them wrapped around his little finger!!!!

 Bodi wasn’t the biggest fan of the beach.  He hated getting sand on his hands, and hated going near the ocean.  Good thing he LOVED the pool.  We spent a LOT of time swimming!

Monday’s ENT appointment-

Bodi met with one of the best, if not THE best, ENT doctor.  He put a scope down Bodi’s nose while Daddy held him down. This was not fun, and definitely reminded me off all the times we had to hold him down for the placement of his feeding tube. The doctor did find a small hole above Bodi’s vocal chords which is allowing fluid and food to penetrate.  Finally an answer as to why he is aspirating!  We asked if this was a result of his cancer or the feeding tube but were assured that he was born with it.  We have Bodi scheduled for surgery, so please pray that all goes well and it fixes the problem.

Monday night Bodi did not sleep well at all.  He woke up at 11:30 and was screaming in pain.  I attributed it to teething.  I gave him some motrin and snuggled him the rest of the night.  He would wake up every hour or so and just screamed.  It was not a fun night.  When I changed him in the morning I noticed his back had broken out in a really bad rash.  I called the pediatrician and made an appointment.  By the time we arrived at the doctors office the rash had broken out all over his body.  The doctor thinks  it may have been an allergy to eggs, which I just gave Bodi on Sunday and Monday.  So we are cutting eggs out of his diet, and he is on a topical steroid to ease the rash.  He woke up much happier and his rash has gone down.

Wednesday-

Today Bodi had an appointment with his speech pathologist.  She is very pleased with how he is eating and is hoping the surgery will solve all of Bodi’s aspirating problems.  Even though we love her, we will hopefully not have to see her anymore! This has been an overwhelming week. I feel like it is just piling on and I feel helpless.  Please continue to keep Bodi in your prayers.  We appreciate them all! We also want to wish everyone a very Happy Thanksgiving.  We have a lot to be thankful this year!

Hi All,

Bodi had his swallow study 2 weeks ago.  This test allows the doctors to view Bodi’s throat and airway as he eats and drinks.  It was amazing to watch.  We could definitely see where he would take a few normal swallows and then one “deep” swallow.  

  

He was a champ and the test took no time at all.  The doctors did see where Bodi is aspirating his liquids.  This is a concern because aspiration can cause pneumonia.  

 

 They gave us some feeding tips to help minimize the chances of aspiration.  He is not allowed to drink from a sippy cup, which he loves.  I have to spoon feed him water after every bite of food.  That has not been a problem because he loves it!  I also was told when feeding him a bottle to pull out the nipple after every suck!  That is just impossible and leads to one pissed off baby!  I have compromised with them to only allow half of the nipple to fill with liquid so there isn’t as much pressure when he sucks.  Not as bad.

After we left, the doctors reviewed his study on a high definition screen and found that Bodi was aspirating more than what they had originally thought. We were advised to see the speech pathologist at Children’s last week.  During his visit, Bodi proved that he has all of the skills that he needs.  It is confusing as to why he is aspirating and why he sounds extremely phlegmy after he eats.  If I’m around other children when the phlegmy sound is going on I always reassure the moms that he is not sick.

  
The Speech pathologist wants to run another swallow study herself.  I have asked her to scan down his body more to view where his tumor is to see if it is somehow causing his complications.  She agreed that would be a good idea.  So next week we go for his second swallow study.  Hopefully this will give us the answers we need and direct us to a better solution.

In the meantime, my little guy is learning and exploring so much!  He has learned to get to a sitting position from his back.  Which has led him to pull himself up, and he walks along couches, in his crib, coffee tables, whatever he can!  He can also crawl now.  He thinks he is hilarious and loves to show off!!  I myself think he is hilarious and the sweetest baby in the world!  He also knows how big he is which of course makes everyone laugh!

 

 
  
    

Hello All,

Bodi met with his oncologist on Monday.  They were so thrilled at how great he looked.  They can not believe that he is the same little baby they treated 6 short months ago.  Bodi’s MRI looked great.  His thoracic tumor has shrunk a little!!!  That is terrific news!  They took him off of his last medication! Yayayyayayayay!  His tumor is larger than what I had thought, roughly the size of a ping pong to golf ball.  So I can’t imagine how big it was or how there was room in his little body for such a large mass.  Ugh, I do not like to think of that.  

  So, our plan from here on…. We go in next week for his swallow test.  Then, drum roll please, we do not have to come back until the beginning of January!!!!!!   Bodi will get to enjoy the holidays without seeing any doctors or hospitals! That is a wonderful Christmas gift!!!  So please continue to pray that his tumor shrinks and that by January the cancer will NOT light up the MIBG scan.  Also, please pray that his swallow study does not show any abnormalities or problems.

  
Bodi’s been a busy little guy.  The Centre College Football game was a blast!  Bodi was honored, along with 6 other little kids, at the beginning of the game.  His friend Sam carried him out onto the field as they called his name.  Tears were streaming down Bryan and my faces.  I still can’t believe all that he has been through. 

    
 We were also able to make it to a Bike night out at the Colerain Quaker Steak & Lube.  It was so much fun.  Bodi’s grandmother’s were able to dote on him and show him off to all of the staff.  Some of my family came and we were able to enjoy a little time before little man declared it was time for bed!!!!   Thanks again to everyone who has been supporting Bodi’s Bites!!!  And a huge thank you to my cousins Rhonda, Wayne, Steve, Misti, Dustin, Brayden, Tanner, and friends, Bobby, Chris and Greg for coming to support Bodi! It means the world to me!

   
 
If that weren’t enough excitement, Bryan, Bodi and I traveled down to Atlanta to visit my best friend.  

  He did great in the car and was so excited to see everyone.  His little girlfriend came over to visit.  Bodi was NOT having it!  He did not appreciate the kiss that Addy gave him.  It took me about 30 minutes to calm him down.  He may not like them now, but I’m sure he’ll change his mind! 

   
    Bodi was also able to meet someone very special on this trip.  He has had a partner in crime during his fight with cancer.  Although they hadn’t met, they shared a unique bond.  I truly believe that Debbie made Bodi stronger during his fight and that Bodi made Debbie stronger.  It was amazing to watch them fight cancer together even though they were miles apart!

  
Bodi is still attending his music class which he LOVES.  It is a blast to watch him learn and play with his new friends.  He has also been on a play date with a neighbor.  That didn’t go as smoothly as I had hoped.  He was not happy at all.  He basically screamed for an hour while his new friend tried to play with him.  I think he will be much more social when he learns to crawl and walk.

  
Which leads me to……….Bodi is scooting!!!!   It is absolutely the funniest thing in the world, to me at least!  His little legs try so hard to push his body while his chin scoots against the ground.  It gets him to where he wants to go, so that is exciting!!!!

 

 
I could go on and on about all of the cute and funny things Bodi is doing, but this post would never end!   Please keep Bodi in your prayers and pray for all of the “golden children” who are battling Cancer.

Bodi will be an honorary captain this weekend at the Centre College Football Game.

Hello All! We have had a great month with Bodi.  We have heard from his doctors and all of his blood work came back good!  yay!  The next step is a swallow test, and his scans.  After watching Bodi eat his lunch at clinic, the doctor was a little concerned as to how he sounded.  Every time he eats he sounds congested.  That’s the best I can describe it.  The doctor said his tumor may have damaged something in his esophagus, so the swallow test will determine if there is any damage.

  
Bodi is still trying his hardest to crawl.  He is almost there.  He is starting to pull himself up on things.  He is so proud of himself when he does it.  I have also started to take him to a music class which he absolutely loves.  The first time I took him there I had to do everything I could to not cry.  It is the best feeling in the world to be able to do normal things with Bodi.  Just by looking at him you would have no idea what all he has been through.

 

 
Bodi has also been his siblings biggest fan!  He loves to go to soccer games, football games, and the theater to watch them excel in their favorite activities.

   
 My absolute favorite new activity that Bodi is doing is allowing me to hold him while he eats.  That sounds bizarre, but right when he was diagnosed he was only able to be on one of his sides due to his comfort.  He was the most comfortable laying on that side at all times.  When we would attempt to hold him we could tell he was so uncomfortable so we opted to let him rest in that position as much as possible.  This meant that when I would feed him, he would be laying down.  I would climb in his crib with him to nurse.  As we went along in this journey together I continued to feed him his bottles while he laid down.  It was the ONLY way he would eat.  Well I am ecstatic to let you know he has started to allow me to rock him while eating and actually snuggle.  It is my most favorite time of the day.

  
Here is some more exciting news.  We were approached by a friend after hearing about Bodi’s diagnosis.  He asked if it would be okay to help raise money for Bodi’s fund.  We felt very blessed but thought that we should also raise money for The Dragonfly Foundation.  Please see the flyer below and when your sweet tooth kicks in, try to stop in your local Quaker Steak & Lube and grab one of their awesome desserts!  Thanks so much!  In addition to the desserts they are also doing a split the pot every Wednesday at Bike night and on Sundays for classic car night.  Part of the split the pot will benefit Bodi as well. Please check out some cool bikes and cars to help fight pediatric cancer.

  

We can not believe that summer is already over.  We were definitely able to enjoy the last two months with Bodi “wireless”.  Bodi absolutely loves water.  He loves to go swimming, take a bath, and splash around.  

  
  
We were able to go to our friend’s cottage in Michigan and enjoy some much needed family time.  Bodi loved hanging on the beach and watching the waves of Lake Michigan.  He is in great spirits and charms everyone he meets!

   
    
 Bodi had his end of chemo hearing test last week and passed with flying colors!!!  Yay Bodi!   

 He was also able to meet his “girlfriend” and give her a #bodiSTRONG t-shirt.  This was the first baby he was actually allowed to play with.  It was so nice to see him interact and not have to worry that his numbers are low, or that he may get sick.  I only wish we could have been that relaxed when my sister and nephews were in town. I was also able to hang with my best friend and her family, which allowed for some normalcy in our lives and lots of laughs!

  
    
  
Bodi got the big kids off to school this week.  He really misses them when they are not around.  I don’t think he likes how quiet the house is without them.

  
Our next appointment with his doctors is next Monday.  Please continue to pray that his cancer doesn’t grow.  We have until the end of September before his next rounds of scans.  Bodi thanks everyone for their prayers too!!!! 

 

Bodi is a free man!  He is free of all devices, bandages, tubes, most medicine, and hospitals (for a few weeks anyways).  His PICC line was removed on Monday!!!!   He actually slept through the nurse pulling it out….of course he did.  #nobigdeal

  
  
During the appointment the Child Life staff and some nurses all came in the room wearing crazy hats and sang Bodi the “no more chemo” song.  He wasn’t sure what was going on, but we definitely appreciated the song.  They also gave him a bag of toys which he loves.  The turtle sings a song about 2 little dragonflies which makes it so special.  Bodi will have a hearing test this week, a checkup with the doctors in 6 weeks, and then a round of scans in 3 months.  

 

 
  

Since Bodi’s PICC line was removed he is able to get into water.  He loves loves LOVES the pool.  He splashes and kicks and gets everyone wet!  It is so awesome to see him play and not have to worry about his line getting wet or infected.  

  
He has also really enjoyed watching his big sister play soccer.

  
Please continue to keep Bodi in your prayers.  

Hey All,

What a jam packed week we have had!  Monday we had the honor to go to the Cincinnati SWAT team’s facilities and meet all of the brave police that help protect our city.  It was such a cool experience.  Everyone was so nice and eager to show us their vehicles, take pictures with Bodi, and we even were able to watch a trained police dog do some tricks.  Needless to say, the kids were pretty excited.  I want to thank Ron H. for setting up this experience for my family.  We had so much fun and will never forget it.

Tuesday was Bryan’s birthday.  Happy birthday!!!!!  We love you!

Bodi has also been pretty fussy these past few days which was accompanied with a rash on his face.  We had to take him to the ER on Tuesday and Wednesday.  They think it is just something viral.  He seems pretty happy today, so hopefully whatever it was has passed.

While in the ER last night we had a special visit from his Oncology Doctors.  They told us that the test results came back and it was what they were hoping to see!  We are stopping chemo!!!!  We have an appointment on Monday to talk through everything and to hopefully remove his PICC.  This is so exciting yet so scary at the same time.  Bodi still has cancer in his liver and in the tumor.  The doctors think that it will clear up on its own.  We are going to keep a close eye on it and he will have scans every 3 months to make sure nothing is growing.  Please continue to pray that God’s healing hands take over while we go these next few months without any treatments.

Thank you all for your prayers and for your continued support of my family.    Love to everyone.

Philippians 4:6

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God.

Hi All,

I have had several people ask me what is going on.  I wish I could tell you something, but we have no new news.  I am so anxious, worried, exhausted that I don’t know what to do with myself.  We will hopefully know something by Wednesday.  If I’ve been short with you, quiet around you or don’t respond to a message, this is why.  My mind is swirling and I can’t seem to put together intelligent sentences.  So please just bare with me!

Bodi has been in pretty good moods.  He’s teething so I’m attributing the added fussiness to that.    I will share some more adorable pictures with you below.

Also, if you haven’t already, please go to a Hoxworth blood center this week and donate blood for The Dragonfly Foundation.

Hope everyone is enjoying this hot HOT weather!

   
    
    
    
    

 

Hey All,

This has been one long week and it’s only Wednesday!!!  Bodi had his bone marrow aspiration and biopsy on Monday.  He was such a trooper.  He woke up out of anesthesia VERY grumpy.  We could tell he was in pain so we decided it was best to give pain medicine.  Usually he sleeps for about 4 hours and wakes up like nothing had happened.  That was not the case on Monday.  He was very restless and crying in his sleep.  We continued to give him pain medicine to ease him.  It seemed to work and by Tuesday morning he was back to his happy self. 

   

  

  Tuesday he had an off day and enjoyed playing with his siblings, eating his toes, and chewing on anything and everything he could.

   
 

Today we had to go back to children’s for his injection before his scan.  They inject him with with a radioactive material, or tracer, that will cling to the cancer in his body.  Tomorrow we will go in the morning for his sedation and MIBG scan that will show where his neuroblastoma is or hopefully is NOT!  We are hoping that by early next week all of his test results will be in and we can have a meeting with his doctors.

In the meantime, here are some precious pictures of my lil buddy!