Monday, July 30, 2012

We made it!


We are in Memphis! We got to St. Jude’s Sunday evening, after a long 8 hour drive. There wasn’t any time to relax once we got here either. We had to go straight to the hospital to check in with admissions, then head over to triage to get clearance for housing. 
We are staying in the Grizzly House. It is amazing, just like 4 star hotel. It is such a blessing to not have to worry about housing while we are here. St. Judes has 3 types of housing depending on how long the expected stay will be. The Grizzly house is from 1-7 days, the Ronald McDonald House is 7-90 days and the Target house is from 90 to 365 days. The Grizzly house is right on campus so we can walk to the hospital every day!
Everyone here is so helpful and friendly. The nurses are excellent and they really care about their patients. They spare no expenses. St. Judes is really a wonderful place!


This is exactly where Nicky needs to be. I am so thankful the Lord opened the door for us to come here. 
Nick’s first day included a lab draw, which couldn’t be done through his port because his port is heparin locked and they needed to draw labs to check his coagulation factor and heparin would affect the results. So they had to stick him. It took 3 tries before managing to get just enough blood for the tests they needed. Nicky has always been a hard stick, even vascular (they use ultrasound to find the vein) has issues drawing blood or placing IV’s. 
But that was no fun, Nicky did really good though and only winced at the pain...my little super hero.
Then we had appointments with anesthesia, neurology and picking up contrast for his CT tomorrow.
We also found out that during surgery Nick will have 2 peripheral IV’s, an arterial line, possibly an epidural, have his port accessed, and he will have to be intubated for 2 days or so, which just gives him more time to heal. It’s going to be very scary seeing him with so many tubes and cords and wires after the surgery. I just get a knot in my throat thinking about it....I just want it to be over and for him not to feel any pain from the surgery.
Thank you everyone for all the prayers and the sweet comments... I do read each one (here and facebook) and appreciate all of you! We are so blessed to have so many people help support us through this journey.

Sunday, July 15, 2012

St. Judes it is!

The St. Judes team met on Wednesday and a surgeon, Dr. Davidoff, feels that he might be able to remove Nick's tumors! He has dealt with many Wilms tumors, including quite a few bilateral cases. But it will be a dangerous and risky surgery. The tumors are intertwined with the renal artery and vein, on both sides. 

I am very nervous about this surgery. Nikolas will be under anesthesia and will be intubated for a long time. But it is the best shot I feel that we have for Nikolas at this point. I honestly don't feel that he can take much more chemotherapy, especially stronger drugs. 

We have to be in Memphis on Monday, July 30th. The day before big brother Benjamin's 4th birthday.... so we will definitely be celebrating early!

And surgery is scheduled for August 3rd. The surgeon said he will have to book the whole day because it will be a long and difficult surgery. 

And, we have been renting and are planning on buying eventually but with everything going on and other issues, things have been taking awhile to get going with the house buying process. But our lease is up on July 31st and we can't afford to extend our lease any longer so we will probably have to move in with my parents for awhile. It will be tight but I am just thankful they live close and are willing to take us in. Plus, Brianna and Benjamin won't have to switch schools. 

God is in control and he has opened certain doors for us. We just have to trust Him that we are making the right decisions and pray that He will give us peace in our circumstances. a

Also, we have wristbands for sale to show support for Nikolas and to help us pay for a vacation for Nikolas to go to the beach and Morgan's Wonderland!! 

Nikolas has a Facebook page called Brighten the Light for Nicky and there is a link on the page to buy them. I will try and post a link... 



Click here to buy a band to show support for Nick!

Wednesday, July 11, 2012

St. Judes?

Unfortunately we have reached a point in fighting Nick's cancer that we have decided to reach out to other hospitals. Nick really needs aggressive chemo and radiation at this point. We discovered through our own findings by going through Nick's medical records that the histology for his cancer showed that it is resistant to chemotherapy and has a high rate of relapse. They never told us any of this. But Nicks oncologist wants to continue with the same chemo regime we've been doing all along.... ?!? That does not make sense to me.
And with this last CT showing they have only shrunk 10% after the 2nd round of chemo we need to do something different. 
Please pray that St. Jude's will be able/willing to accept Nick's case!

Saturday, July 7, 2012

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

Wednesday, July 4, 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.

Sunday, July 1, 2012

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
video