We have had a busy week and it’s only Tuesday!!!!!!   Bodi had his scan on Monday afternoon.  He was such a big boy.  He came out of anesthesia around 4:30 and we were home by 5.  Our doctor called around 7:30 and was so excited to tell us some good news.  His liver looks like a normal liver!!!!  Yayayay!  It is no longer consuming his abdomen pushing on his diagphram, stomach, and making him uncomfortable.  The second good news is that his thoracic tumor has shrunk significantly!!!!!!!!!!   We will find out tomorrow its actual size.  This is AMAZING!!!  The chemo is doing its job!!!  What a HUGE sigh of relief!!!!!  When Bodi woke up from sleeping off the anesthesia I whispered to him the good news and I swear he gave me a little smile like he already knew!!!!!   He is such a strong little boy and amazes me daily.

 

 
  
Today we went in for his echocardiagram.  We were anticipating that he would be under sedation for this test as well, but the nurse asked if we would like to try it without the medication.  Um, yes please!!  Of course, Mr. Bodi was such a good boy that he breezed through the echo without needing medication!!!  We were in and out of the hospital within 45 minutes….again, he is a rockstar!  We haven’t heard the results from this test, but I know they will be good!

After playing all day, we receieved a phone call from the hospital.  Our case manager informed us that there was a cancellation for tomorrow and they were able to squeeze Bodi in for his bone marrow aspiration and biopsy.   Although I don’t want him to go through yet another painful procedure, I am glad it’s tomorrow.  If there wasn’t a cancellation we would have to wait until the 15th for the procedure and it’s results.

 

 
Next week he will go back in for a MIBG scan.  This scan is very important as it will show where the cancer is.  We are hoping that there is no more cancer in his liver and in the tumor.  Once the doctors receive all of the results from all of these tests, we will sit down with Bodi’s team of doctors and discuss the pros and cons of removing his thoracic tumor.  So the next 7 days are VERY important.  Please keep our warrior in your prayers as we definitely feel them and God definitely hears them!!!!!

  

  

Bodi’s fourth round of chemo went as good as can be expected.  He took it like a champ.  It did however, completely wear him out.  He has been sleeping a lot longer than normal.  On Saturday, second day of chemo, he would sleep for 2-3 hours, awake for 1, and then go back to sleep.   He has also been sleeping through the night, which is great, but it means he misses at least two feedings. While we were in the hospital a lot of the staff came to visit Bodi.  It was so great to see their smiling faces.  Bodi definitely has some fans!!!!!! 😜  

The past few days he’s been in great spirits, but not really interested in eating.  I’ve been in contact with his dietician and she and his doctor have decided it’s probably a good idea to put his feeding tube back in. 😢 Although I’ve  cried over this and I really really don’t want it to go back in, I know it is best for him.  Once he bounces back from the chemo I’m sure we can re-evaluate him and remove it.

Bodi has been loving hanging out with his cousins the past few days.  My sister, her husband, and two children have been in town since Saturday night.  My sister and I are extremely close and it has been wonderful to have her in town.  We have been VERY cautious with Bodi and her two children.  They have not shared any toys, bouncy’s, clothes, touches, furniture, etc.   We were able to go to a local farm to see the animals and take in nature.  It was so nice.  I drove behind my sister with Bodi on the way there and started to get choked up.  This is what life should be like.  A carefree morning, planning the day with my sister and her two boys.  Enjoying outside and not having to worry about what appointments are coming up, or to politely ask people to not touch my child, or to worry about my nephew trying to give Bodi a hug.

The next day we sped through the aquarium because  it was not very conducive to strollers and I was also getting a little anxious to be in an enclosed area with Bodi.  We headed back to my mom and dad’s house where Bodi and I stayed in our designated area.

My Aunt and Uncle arrived in town last night as well.  It is so nice to have so much extra love around.  While listening to everyone chatting and catching up my anxiety started to creep in.  Bodi has his very important scans under sedation on Monday AND Tuesday.  It breaks my heart that he has to go through this.  I KNOW the scans will show that the tumor is shrinking and that his liver is back to normalish size. Please pray for Bodi as this is an important week!!!!!  

Hello Warriors,

We arrived at Children’s this morning.  We are checked in and ready to go.  Chemo should start around 2 pm.  I never thought  I would be happy that my child would be receiving chemo, but it is a necessary evil.  The chemo is attacking the cancer and for that I am grateful.

The doctor that had originally seen us back in early April came in today.  He was amazed at how big Bodi has gotten.  He couldn’t believ

e his eyes.  It was so reassuring to hear his excitement about Bodi.

Bodi is scheduled for an MRI and Echocardiogram under sedation at the end of this month.  The MRI will show how the liver and thoracic tumor responded to this round of chemo.  We are praying that the tumor has shrunk more than 50%.

Please continue to pray that Bodi does not feel sick during his chemo.  Please pray that he remains his happy self and that he continues to eat his bottles.  Also pray that the chemo attacks his cancer!!!!!!

Thanks so much!

Hello Everyone!

It’s me, Bodi!  I sure hope everyone has had a great week.  It has been so hot outside that we have been staying inside where it is cool.  I have been working so hard on rolling over, and guess what, I have mastered it!!!  As soon as Mommy puts me on my back I’m right to my stomach.  She thinks it’s so cute.  Everyone always cheers me on when I do that, adults are so funny.

I’ve also started to stick my tongue out…mommy always cracks up when I do this….

I also let my Mommy and Daddy go out to a wedding this weekend.  I was pretty good for my Mamaw and Papaw.  Mommy and Daddy said they had a great time, but they missed me a lot.  I let them know how excited I was to see them when they got back.  I screamed with excitement and almost jumped out of my Mamaw’s arms!!!  Good thing she was holding on tight.

  

I haven’t been wanting to go to the hospital to get my chemo.  It’s been put off 4 times.  Well they have figured that out and have decided to give me medicine to make my blood thingies get higher.  Darn!  Looks like I’m going this week.  Wish me luck!!!!

I’m going to hand this over to my Mommy now….love you all!

Hey,

Bodi has been in really great spirits.  He has really found his voice and squeals and laughs a ton.  It is the cutest thing.  He has definitely mastered rolling over from his back to his tummy.  Now we are going to work on rolling from his tummy to his back.  He is eating so well that I believe we are going to get his feeding tube removed this week.  I can not wait to kiss his little cheek!!!!!

We went to the clinic this morning where they drew labs again.  His white blood count only came up by about 30 points, which is not enough.  They administered GCSF, which is a booster shot, into his PICC.  That should really make his numbers jump.  We will go back again tomorrow to get another dose of GCSF.  They will test his labs again tomorrow and Wednesday. By Thursday he should be ready for his 4th round of chemo.

Please continue to pray for Bodi.  We feel them all!

Hey all, 

Bodi’s numbers came up a little, but not enough for chemo.  We are on hold until Monday.  Bodi has been in great spirits and we are definitely enjoying our time at home! He is really working on rolling over.  He rolled over twice yesterday but wasn’t so interested in it today.  We will try again tomorrow!

   
 

Bodi was not admitted for chemo again today.  His numbers dropped even more.  The new plan is to test his blood on Wednesday and hopefully go in on Thursday.  We will see.  Please keep praying!!!!

As you can see from the video, he is still in great spirits.

Bodi’s labs came back.  It is a no go for chemo. His white blood cell count is too low.  We have rescheduled for Monday.  Bodi pulled his NJ tube out again around 3:30 am Wednesday morning.  The dietician decided that since he is gaining weight and doing so well that his tube can be pulled back to an NG.  That means that the tube is now in his stomach instead of his small intestines.  So no more feeding pump for Bodi!!! YAYAYAYAYYAYAYAYAY!!  Now our routine is to offer him 5 oz of formula and whatever he doesn’t eat I put into a syringe and hook that up to his tube.  The remaining liquid goes into his stomach.  The hope is that his stomach adapts to having that much liquid in it and he starts to drink the full 5 oz.   She said if he starts to do that by next week we can remove the tube all together!!!!!  That would be amazing!

In the meantime, Bodi is trying his hardest to roll over.  

I’ve had a few people asking how they can follow this blog.  In the top left hand corner there should be a white box.  Click on that and it should say “follow”.  If you click that you should receive emails every time I publish a new post.

Also, We have seen several people’s #bodiSTRONG shirts are wearing off.  We have contacted Booster and they will replace the shirt.  All you have to do is take a picture.  Go to http://www.booster.com and click on contact us.  We apologize for this inconvenience.

This past week has been pretty uneventful.  Bodi has enjoyed spending time with his siblings, grandparents, aunts, uncles and cousins.  He loves watching his brother and sisters splashing around in the pool.  I wish I could put him in a float and let him play in the pool.

Bodi still loves the baby in the mirror.  He hasn’t figured out it is him!  It’s so cute to see him laugh at himself.  We are all enjoying watching Bodi learn new things everyday and continue to get bigger and stronger.

 

 
I would like to send a huge thank you to Aleisa for taking the time out and coming over to snuggle Bodi.  He loves you!  Also, thank you for helping me set up this website.  I know you worked so hard getting all of my posts on here and I can’t thank you enough!!!!  You are so sweet.  Also, thank you for being a fantastic listener.  You always know what to say!!!

 

 
We received a phone call last night letting us know that Bodi’s white blood cell count is low.  The doctor said that if his numbers don’t improve, he won’t be able to receive chemo this week.  Our appointment is in the morning, so please pray that his numbers come up so he can continue to kill this cancer!

 

 
Bodi wanted me to send a huge CONGRATULATIONS to his friend Debbie!!!  She completed her chemo today!!!  Way to go Debbie!!!  Wish we could give you a huge hug!

Lastly, Bodi hit a big milestone today. He rolled over for the first time!!!!  It was the most adorable thing I’ve ever seen. I wish I could have gotten it on video, but I wasn’t expecting it!

 

June 3rd

We are waiting on Bodi’s labs to come back to make sure his white blood cell count has improved.

  One year ago today heaven received a very special angel. She’s continued to bless a lot of people and watch over our little Bodi.    Today he is wearing a pink heart for little Nora.  We love you and think of you always Lady Baby.  💗

  

It’s 4:21 am and I’ve been up for two and a half hours.  Not out of the ordinary as I have to change his feeding tube every 4 hours and feed him a bottle every 3.  Tonight is a little different.  My heart is heavy as I have learned of a little boy who is also battling Neuroblastoma 4s.  He has had a much harder battle then my Bodi and I can’t imagine the heartache his family has endured.  They are being transferred to Cincinnati children’s from Columbus this week.  We will hopefully get a chance to meet next week when Bodi goes in for his 4th round.  Please add little Frankie to your prayers.

Bodi has had this past week off and we have taken full advantage.  He has been in great spirits and really enjoying every day.  His Great Aunt Donna came in town from Florida and Bodi was able to spend a lot of snuggle time with her!  It was great!!
If that wasn’t exciting enough, Bodi is really getting his appetite back!  We have been slowly working him up from half an ounce to 2 ounces every 3 hours. He stayed steady at 2 ounces for what seemed like forever but the past week and a half he has been eating 3 ounces.  I was so proud to announce that to his dietician last week!  Well now I can’t wait to tell her that he was taking 4 ounces and for the past 2 days he has been taking 5 ounces!!!!  For me that is huge because it means his stomach isn’t being squished by his liver!!!!!  Yay!!!!!!!!!!! Before bed tonight Bodi ate 6 ounces!!!! Such a big boy!

Another super exciting development is that Bodi slept through the night for the first time on Friday !!!!! He slept from 10:15-7!!!!!! Wahoooo!!!  He’s also been sleeping since 10 tonight, so I’m hoping this is a new trend!! Although I have to admit that I’ve been waiting for a reason to pick him up and snuggle.  His snuggles are the BEST!

Everyday we find a new thing that Bodi loves.  Yesterday it was the baby in the mirror.  He loves that baby and thinks he’s hilarious!  He hasn’t realized that baby is him yet, so shhhhh, don’t tell him!
Please continue to pray for Bodi as they are working.  He is such a happy baby!

****disclaimer****
it is late and I apologize for any and all misspellings and grammatical errors!!!!