My Story

On January 31st our sweet 3 year old son, Isaiah William, was diagnosed with stage 4 neuroblastoma cancer. The cancer is about the size of a grapefruit, covering a large portion of the left side of his abdomen and chest. It is also in his bone marrow and bones. Neuroblastoma is a type of cancer that is known to grow rapidly and aggressively. With extensive treatment in the future and an unknown outcome, our hope for our beloved son is set before the feet of Jesus.

About a month ago Isaiah had a bad stomach flu.  In the days to follow he was complaining for stomach pains even to the point of rolling on the floor writhing in pain. Christine knew something was wrong.  She took Isaiah to the hospital to have him checked out.  The expected it was likely constipation due to the sickness and a backup of gas.  An X-Ray revealed that he was bloated and then sent us home with suppositories to clean his system out, but they scheduled an Ultrasound the next day to check him further after he was cleared out. Dr. Eisinger wanted to be thorough and sure.
The Ultrasound revealed that Isaiah's left Kidney was not functioning properly so Doctor Eisinger suspected a UPJ obstruction and referred us to a Urologist to be sure. The Urologist checked him out, and through his observation could tell that Isaiah was extremely sensitive on his left side near his kidney and the way he winced, he likely has had some pain there for a while.  He scheduled a MAG 3 infusion scan to check the Kidney Function.
Kidney function test revealed that Isaiah definitely had a Kidney obstruction that the Doctor felt was a UPJ obstruction caused by Isaiah veins and arteries growing around his Urethra and slowing the flow to the bladder.  This causes the Kidney to get inflamed and can cause great pain. The test revealed that the obstruction was not severe, that his right kidney was doing 55% of the work and the left was doing 45%.  The doctor felt that Surgery was not yet necessary and we should just observe Isaiah for the next 3 months and if anything changed we should bring him in immediately for further testing.

The following two weeks we observed.  Isaiah was not himself. Christine began to notice he looked a bit pale.  He was frequently running a low grade fever usually just under 100.  His energy was way down.  Some days he just wanted to lay on the couch and watch cartoons all day.  Not a normal 3 year old.  Not typical of Isaiah.  She would sometimes give him Ibuprofen and on those days he would perk up.  He would play and run around the house again.  He would laugh and tease his sister Isabelle.  On those days Daddy and Isaiah would play tackle and run circles around the house chasing each other.  More normal for Isaiah. Still the doctor said to observe, so we did.

After about two weeks, Isaiah went to Grandma's house so Dan and Christine could go to Fargo for Christine's 30th birthday, January 27th.  Grandma JoAnn had said that Isaiah was not quite himself that night and he seemed a bit warm.  He spent the night at Grandma's house and when Christine picked him up the next day, he had a fever and was lethargic.  That day Saturday January 28th, Isaiah spent most of the day and evening on the couch.  He spiked a fever around 102 and our concerns grew. 

As they day went on he began to complain that he not only had a belly ache but he hurt all over.  His head, his legs, his left side of his chest all had pain.  Christine was achy all over a days before so we thought, maybe it is just a virus like she had.  By night time we watched as Isaiah tried to get off the couch and he looked like an old man trying to get up, wincing with the pain he was feeling.  It broke our hearts.  Christine at this point knew it was no virus.  But it was 9PM on a Saturday so we thought it best that Isaiah get a good night sleep as if we went to the ER we might not even get to see a Doctor and Isaiah would be up all night with checking vitals and such if they admitted him. 

When Isaiah woke on the morning of Sunday the 29th his Fever was still around 102 and he was still obviously hurting.  Christine brought him in right away to the ER.  We spent much of the day in the ER and Doctor Eisinger came in on a Sunday just to check on little Isaiah.  He wanted more tests done so we were admitted and brought upstairs to spend the night in the Pediatric wing.  Blood work was taken and Dr. Eisinger still could not figure it out.  By the end of the day on Sunday we saw temps as high as 104.5!

The next morning Dr. Eisinger came in and Isaiah went to have another Ultra Sound to check his kidneys and abdomen. An X-Ray was also scheduled and we were discussing whether a CT scan would be necessary. Apparently Dr. Eisinger had been up most of the night thinking about Isaiah and what could be going on inside his little body. When he saw his blood work on Monday morning he knew something was not right.  He came into the Ultrasound to see what was coming up on the screen.  Usually doctors are sent the results of the scan after it is done.  When the Ultrasound was over Dr. Eisinger cancelled the X-ray and anything else that was scheduled...

continue reading on journal entry Feb.6, 2012