Wednesday, February 13, 2013

The Diagnosis, Part 1...

From the time Braden was 6 months old, until Halloween night of 2007, there were a lot of hospital stays and visits.

His developmental problems had made themselves apparent and I really felt like there might be some sort of connection with all of his health problems and his developmental problems.

We had taken him to the Genetics Department of CMH to look for a couple of rare genetic syndromes.  They were progressively regressive...meaning eventually terminal. They would result in him becoming progressively worse, eventually in a vegetative state, and then dying.

We were relieved to learn that he did not have those particular syndromes, but I still felt there was something there though.

Then came Halloween night.

Zach was Buzz Lightyear and Braden was Woody.

Braden was crying and could not be consoled. This was rare, but familiar. It always happened when he had pneumonia and we were entering another respiratory event.

So after trying to get him to go trick or treating with us, we gave up and took him to the ER.

They did a chest x-ray, as usual, but this time the doctor's eyes said something different.  She said there was a small gray shadow in his liver.

She told us that she thought it was probably an enlarged liver due to a virus but she wanted us to stay overnight so they could do a CBC.

We did, Raggedy Andy was our doc.  Seriously!! :)

The next morning a new doc came in (dressed as himself) and he noted that Braden's hemoglobin was 7.5 and that was almost at transfusion level. He felt like it was a dietary lack of iron that was causing it and that it was really just an enlarged liver due to a virus.

He couldn't have been more wrong.

He told us to follow up with our pediatrician, Dr. Shanker and he sent us home with iron drops to raise his hgb.

If you've read anything I've ever written, you know I did follow up.  REPEATEDLY!

Braden started iron drops.  He had told us it would take a few weeks.  We went to our pediatrician two days after we were in the hospital and then back in two weeks for labs and another physical exam.

At that time, the pediatrician told me that his liver was normal size again and he didn't feel anything abnormal. His hgb was up to around 8 something so they wanted us to continue on the iron drops.

Braden wasn't eating much and was losing weight. He was very sleepy and very cranky (which was NOT Braden).

I continued to take him back in and each time they rolled their eyes and sighed because "she's back AGAIN!"

I once took Braden in for a weight check because he had lost SO much weight. His clothes were simply hanging off of him. The nurse was clearly frustrated with me and how many times we had been in and she said, "I don't know WHY you are here for a weight check, he has gained a pound since the last time you were here!"

I ripped Braden's shirt off and showed her his skeleton appearance with a big belly and said, "LOOK  AT HIM!! THIS CANNOT BE RIGHT!!"

She literally sighed and said, "I don't know what to tell you...he's gained a pound!"

It was tumor weight.

BUT, I continued to take him back in.  December 23,  I took him in because he was really having trouble breathing. Dr. Shanker agreed that he wasn't moving much air on the right side. He prescribed steroids which is standard for asthma flares.

We did those and it didn't do any good. We got through Christmas and on December 28, 2007 right after Brian's parents got on a plane to head home, we went outside to play in the snow for a bit.

Braden was behaving just like he had on Halloween (only two months prior). SO..,we took him back to the ER out of pure frustration with our pediatrician.

All four of us went, which was rare but I just had a feeling that we all needed to be there.  Angel whisper.

That night would change our lives forever. 

They did another chest x-ray and this time the doc came in white as a sheet and showed us the picture. It was completely gray...that small shadow had exploded. It had completely compressed his right lung..that's why he wasn't moving air on that side. His liver and kidney had been squished down at the bottom of his torso and the tumor was approaching his heart.

She said she didn't know what it was but it could be cancer or it could be something progressively regressive in his liver.

I was voting for cancer. At least he would have a chance if it was cancer, he would not if it was something progressively regressive.

We drove Braden downtown to the hospital (no more ambulances where I couldn't be with him) and we were admitted onto the floor while they ran more blood and a urine test.

Yes...a urine test.

They put two cotton balls in his diaper and once they were wet, they ran an HVA/VMA test on them to see if those two proteins were in his urine at elevated levels. If so, that would indicate neuroblastoma.

Stop for a minute and let that sink in. All it took was TWO COTTON BALLS OF URINE!!

You have GOT to be freaking kidding me?!!! 


The nurse who had been with us for two days, stayed late. I knew that wasn't a good sign. She would later tell me that she wanted to be there when he told us.

His HVA was over 250...the upper limit of normal is like 15. 

The doctor told us that they would do scans and a biopsy to confirm staging but that it was neuroblastoma.

The nurse was crying and she gave me a huge hug. Then she told me that she was sorry but she was glad that we were Braden's parents.  I didn't fully get that until much later, but when I learned how awful this cancer was and remembered the baby in the PICU who had a dark room with no family, I knew.

I asked the doctor for information about neuroblastoma and he said he didn't know anything about it but he suggested I look it up on the computer



I reminded him that I hadn't planned on being in the hospital and had no computer with me!

He said he could try to print some things for me.  THAT was my initiation into neuroblastoma.

I learned a lot in part one of the diagnosis meeting.  First, doctors do not know everything.

MOMS KNOW THEIR BABIES!!! AND Doctors should LISTEN to us!

And I trusted NO ONE in the medical world. Every doctor from that moment forward had to earn even the tiniest respect and trust from me.  I interrogate and debate every single thing any doctor tells me to the finite degree.  They better be able to back it up with solid research that I can't poke any holes in for me to agree.

I didn't now WHAT was wrong with Braden, but I knew something was wrong and I tried repeatedly to get help for my son, but the pediatrician would not listen to me and brushed me off every single time I took him in.

I spent a LONG time trying to figure out how I was going to handle that. After Braden's diagnosis (just about a week after I saw Dr. Shanker for the last time in his office), he called up to talk to us at the hospital and he apologized for missing the diagnosis.

It was very fortunate for him that Brian took that call.  Brian was calm, I tend to not be calm about things like that! :)

He wasn't the only doctor who missed it though...the doc we had after the overnight stay on Halloween missed it, pretty much every doc at the pediatrician's office had seen Braden and they all missed it.

What I had to tell myself is that no one tried to miss it.  They just did! It's wrong and it put my son's life at risk but they mean to miss it.

It just proves the point that we MUST do a better job of educating the medical world on diagnosing childhood cancer. Missing these diagnoses is simply unacceptable.

They didn't know.  Not okay so we are trying to change that through our foundation and through the actions I took after this with the hospital and the pediatrician (no, not a law suit).

But, we have to do better!!  We CAN do better!!!

I have HOPE!!

I'll tell you part 2 of this story tomorrow, who we called, what it was like moving to the oncology floor, the biopsy, and the speech in which we learned about neuroblastoma for the first time.

Damn cAncer!!