Real purpose

"Tomorrow morning," the surgeon began,
"I will open up your
heart..."

"You will find Jesus there,"
the boy interrupted...

The surgeon looked up. Annoyed. 

"I will cut your heart open," he continued,
“to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in
there," said the boy.

The surgeon looked to the parents, who
sat quietly. 

"When I see how much
damage has been done, I will sew your
heart and chest back up, and I will plan
what to do next."

"But you'll find Jesus in my heart. The
Bible says He lives there. The hymns all say He lives
there. You'll find Him in my heart."

The surgeon had had enough. "I will
tell you what I will find in your
heart. I will find damaged muscle, low
blood supply, and weakened vessels.
And I will find out if I can make you well."

"You will find Jesus there too. He lives there."

The surgeon left.

Later the surgeon sat in his office,
recording his notes from the surgery,
"....damaged aorta, damaged pulmonary
vein, widespread muscle degeneration.
No hope for transplant, no hope for cure.
Therapy:
Painkillers and bed rest.
Prognosis:”

Here he paused. 

“Death within one year."

He stopped the recorder, but there was more to be said. 

"Why?" he asked aloud.
"Why did You do this? You have put him here; 

You've put him in this pain;
and You've cursed him to an early death.
Why?"

The Lord answered and said, "The boy,
my lamb, was not meant for your
flock for long, for he is a part of My
flock, and will forever be.
Here, in My flock, he will feel no pain, 

and will be comforted as you cannot imagine. 

His parents will one day join him here, and they will know peace. 

My flock will continue to grow.."

The surgeon's tears were hot, but his
anger was hotter. "You created
that boy, and You created that heart.
He will be dead in months. Why?"

The Lord answered, "The boy, My lamb,
shall return to My flock, for He has
done his duty.I did not put My lamb
with your flock to lose him, 

but to retrieve another lost lamb."

The surgeon wept... 

The surgeon sat beside the boy's bed; 

the boy's parents sat across from him. 

The boy awoke and whispered, 

"Did you cut open my heart?"

"Yes," said the surgeon.
"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

Author
Unknown - Celebrate Jesus in 2012

Back again...

Well Nick got out of the hospital on Sunday. It was quite an ordeal to get out of the hospital. In the morning the surgeon said he looked good enough to go home so they would put the orders in to discharge us.

Well we waited....and waited....and waited.

I kept asking the nurse and she would say she had paged the team but they had not answered her back.

Nick had also had a stool earlier that morning that look and smelled like c. diff. I just knew he had it again but the doctor said he didn't think so because he had not had any antibiotics so it would be unusual that he would have it. But I told him its the smell, c.diff. has a very particular smell. So he ordered it to be tested.

Of course, when we finally got discharged at 9:30 p.m. and about an hour after we got back home the doctor called and said that he tested positive for c. diff. and would be calling in a script for Flagyl to the pharmacy.

And yesterday evening Nikolas just couldn't get comfortable. His nurse, Maya, checked his stomach and he was very distended and his bowel sounds were hyperactive and he hadn't had a bm since Sunday. So we called the hem/onc nurse and told her what was going on she told us to go to the ER to get him checked out.

Long story short, he was admitted and they are giving him IV flagyl, miralax and a suppository. With just having surgery and the c. diff. they have to be extremely careful. The c. diff can be very dangerous and cause a lot of complications. So far though, he seems to be doing great.

On a brighter note, we will be getting an MRI of his brain tomorrow. We've been trying to get it for awhile because of increased seizures and this raised area on the side of his head that seems to new and getting bigger.

We're praying to be out sometime after the MRI tomorrow.

Pain...

Sometimes I just wish I could scoop my baby up and run away with him. Take him away from all the pain and hurting he has to go through.

He doesn't deserve this.

He deserves to have a happy, healthy life. Where he can run around and play like any almost 2 year old does. He deserves to eat pizza and spaghetti and ice cream and make a mess while doing it. He deserves to fight with his big brother over which car to play with and with his big sister over making a mess with her makeup. He deserves to go to Disney Land or Morgan's Wonderland or to the ocean to hear the waves and dig is little feet in the sand. He deserves so much more than I could possibly ever give him.

He deserves to cry over something other than being in pain or being scared from the loud noise his suction machine makes.

I don't know why my little boy has to go through all these things.

But I do know that he knows that he is loved. And every time I kiss his face he knows it's me (or his daddy because of his scratchy whiskers). I know he sees angels. I know he has more beautiful dreams than anyone could imagine. I know he loves the twinkle stars in his music therapy room at the Lee Ann Britain Center and he loves when I sing Twinkle Little Star to him.

I know that one day, when we are both in Heaven together, we will dance together and laugh and he will tell me how much he loved the loud, squeaky kisses I always gave him.

I know that God loves him more than I do and that He has Nikolas in his arms.

This may sound pessimistic to some or pitiful or just not possible but I have always known that Nikolas will not be on this earth for very long and I believe the Holy Spirit has been getting me ready for when he will leave this earth and go to be with Jesus in Heaven.

I don't know when but I am grateful to the Lord for every minute I have with him.

But I do know that I want to make his life on earth as happy as I possibly can. I want to make sure every day is filled with fun and smiles.

I am tired of setting aside and not taking enough stand for my little boy. I want the best for him and I want to make sure he is getting the best because he deserves it.

I'm sorry if I hurt someone's feelings along the way and I will be as nice as possible but I just can't let the little things go by anymore.

I love my son very much and my job as his mommy is to make sure he is taken care of and that is what I am going to do.

Sorry for the rant, I just wanted to express my feelings and how much I love my little rockstar.


Thank you for all of the recent prayers for Nick and for the monetary blessings given to our family for Nikolas.

Keep praying, we have a lot more fighting to do.


Here's a sweet video I took of Nick's big brother, Benjamin, singing his favorite song to him

Sorry, late update... Nick's surgery was successful. Praise the Lord! So we're now waiting for the pathology report to come back so we know what are next step in this journey will be. Nick was in a lot of pain right after the surgery but he had a pain pump and we got it under control easily but it depresses his breathing so he needs oxygen. The surgeon said since he had to move Nick's small intestines completely out of his body during surgery it has caused his bowels to stop working. So hopefully by not feeding him they will wake back up soon. So we tried clear liquids yesterday but his stomach started to get distended, so we stopped clears too. We're hoping that today he will be able to start clears again today, but we have to wait for the surgeon to come by to see him. So at this point we are just waiting, please pray the results come back today. Nicks oncologist is not here tomorrow and his will be doing rounds all next week so it may be hard to get it to see him and apparently we can only get the results from him.

Surgery today

We are in the surgery waiting area waiting for an update from the surgeon. Nick went back at about 7:30 a.m.

We were able to meet with the surgeon yesterday at his pre-admission testing appointment. He seems like a good doctor and he's dealt with bilateral Wilms tumors before. But he said that Nicks case was the worst he had ever seen.

Nicks tumors are shrinking towards his blood vessels, or the tree trunk of the kidney.

More bad news, they are inoperable.

The best hope we have now is that chemotherapy and radiation will shrink them away completely.
This surgery is a big deal. It's going to determine a lot. It will also make Nick's staging change. He will now be at stage 4 instead of 5. It sounds better but when you look at the staging it's actually worse.

I will update as soon as he's out of recovery I get a chance. Please pray!!

CT results

We got the results of the CT today.

It's not the best news, it's not terrible but not what we hoped for.

The right one has shrunk a few centimeters, and the left one, which was the larger one, has shrunk from 4.5 inches to 3.8 inches.

But the bad part is they are shrinking towards his blood vessels, making them inoperable right now. So he'll need an open biopsy to determine if we're using the right chemotherapy drugs for his type of cancer.

Also, the doctor that our oncologist originally consulted with is going to be out of town next week and is unable to meet with us or do the biopsy until the June 26th. I don't know if I feel comfortable waiting until then. It's standard protocol to do either surgery or a biopsy during week 13 and June 26th will be week 14. I don't know if thats a huge deal...I just hate to wait and put stuff off till later when dealing with Nick's tumors. I would hate for him to be getting the wrong chemo drugs.

The wonderful director of the Britain Center that Nick goes to is friends with an oncologist at Children's and she gave us the name of another surgeon that has dealt with Wilms' tumors so we're trying to decide if its a good idea to consult him or just wait until our original doctor is available.

We're praying for wisdom, we just want whats best for Nick. Please pray with us.

We have chemo again tomorrow and we really need to decide by then if we want to check this other doctors schedule and see if he is available to do the biopsy or just prayerfully wait things out.

Another Big CT

Tomorrow is the next big CT. This will determine what type of surgery Nick will have, either a biopsy or resection of the tumors from his kidneys. Hopefully, prayerfully, the tumors will have shrunk enough so the surgeon will feel confident enough to do surgery and leave plenty of good kidney tissue behind.

We have to be there at noon, the CT is scheduled for 2 p.m.

We also started a new medicine to help with the neuropathy we think Nick is having, it's called Neurontin. His neurologist thinks that the oxycodone and lorazepam Nick has been taking for pain and agitation are causing his lowered tone and breathing issues. So Nick's oncologist wants us to hopefully stop, or at least greatly decrease, the pain medicines. And so far it seems he seems to be doing great on it, but it probably needs to be increased right after he gets his weekly chemo meds. Surprisingly after week 11's chemo, which is all three drugs, Nick didn't vomit at all, not even once. His nutritionist told me about a study one hospital did on kids that were learning to eat after having a g-tube of some type and Neurontin seemed to help quite a few of them, especially with the gagging issues they were having.

I will update as soon as we know when surgery is scheduled. Please pray for whatever is best for Nick, which at this point is that they have shrunk enough to remove them completely!