My Irish side....and the continued fight for hope.

So, continuing the story from yesterday, the same day that we got the news that Braden was in a miraculous second remission...

----And there is SO MUCH I have left out that happened before the 8 months of chemo (we will cover that another day) :)

Dr. Mosse said what I had always believed. 

Just because the scans showed no evidence of disease, did not mean that he had no cancer cells in his body.

It just meant that he had few enough cells that they couldn't be seen on his scans. 

A second remission with neuroblastoma is extremely rare (they don't even keep numbers on that because there are so few), and the vast majority of those kids relapse a third time within 6-12 months.

Makes the point...most often it's not really gone, just hiding from the scan technology.

But...our kids don't have treatment options because most trials are written such that you must show evidence of disease to get treatment.

Again, it makes sense to treat kids who have disease...but we believed that he had disease remaining, but we couldn't see it. 

Another angel whisper.

So Dr. Mosse mentioned a few therapies out there...there was ONE he might be able to qualify for, a new type of immunotherapy (ie antibody therapy).  Kids could be in remission and receive it...

The next day she called me and said he couldn't qualify for it because there was one teeny piece of scar tissue showing (they were sure it was not cancer) and that ruled him out.

Damn.

So I thought and thought and thought...and again, after a dream, I woke up and sent another email to Dr. Mosse.

Let me back up to August 11, 2009,

when we found Braden's relapse, we were trying to qualify for immunotherapy. 

Right after he was declared to be in his FIRST remission...I still felt like there were cells there and was fighting for more therapy.

At that same time, we got a letter from the NIH stating that the immunotherapy he had not received during his initial protocol, (due to a random draw) had shown to improve odds of survival for children like Braden by 20%...umm...that's a lot when you only have 30% to start.

SUPER!  And damn.

So we decided to take them up on their offer to allow Braden to receive it.  We would do immunotherapy and that would help get those cells I still believed were there.

But we had to scan to make sure he remained in remission before he could begin receiving it.

Immunotherapy is also supposed to be done within 110 days of bone marrow transplant.

It was considerably later than that for Braden.

Why within 110 days??  Well, here's how it works:

CH 14.18 is the name of the antibody used in immunotherapy.  It is paired with cytokines that help the antibody seek out and bind to neuroblastoma cells.  Once it attaches, it kills just those nb cells. 

It's like a targeted missile.  It seeks out ONLY its target and doesn't destroy all cells like chemotherapy.

AWESOME!!!

However, it additionally attaches to every nerve cell and it is EXTRAORDINARILY painful.

Transplant knocks out your entire immune system. You return to having less than the immune system of a fetus.  You are at high risk from every single agent that can cause illness or infection.

As a result, you spend months in isolation from the world.  100 days.  100 days of no contact with the real world. 

It's great (more sarcasm)...someday we will talk about transplant and those 100 days and my extreme germophobia!! LOL!

SO...if you do immunotherapy within 110 days of transplant, your system hasn't really started to fully reboot and begin to create immunities again yet.  That is good for this therapy because your body doesn't recognize the CH 14.18 and the cytokines and try to fight them off as invaders as readily as when your immune system is more fully developed after those 110 days.

We decided to go for it and scanned to qualify and found his relapse which meant he couldn't proceed with the immunotherapy due to his progression of disease. 

Horrible, devastating news...

So fast foward back to January 28, 2011

The day after we found out he was in a second remission and the day we found out Braden couldn't qualify for that "new immunotherapy" because of that scar tissue and I was thinking and thinking and had that dream and fired off the email to ask Dr. Mosse...

and asked her if NOW we could get Ch 14.18 immunotherapy for Braden since he had already been slated to receive it back in 2009.

She said she had already been working on it and that we would have to appeal to try to receive it on a compassionate care access basis.  Because he had originally been slated to receive it and had been accounted for in the allotment of drug made, he might be able to get it.  It was in very short supply and difficult to get access to.  And...

It had never been done before. 

No child have ever received CH 14.18 in the case of a relapse and second remission.

It works best in cases of "minimal residual disease" (MRD) and showing no evidence of disease was ideal.

Perfect....we elected to do immunotherapy at Children's Mercy in KC rather than in Philly...it would be the same therapy in either location and it would help to not have to pay for all of those flights as there were five rounds...a week long each.

HUGE mistake.

Well...we got it and began immunotherapy here. 

Now let me just say right now..our nurses ROCKED it out!! They did. 

Our oncologist, on the other hand, produced an epic fail!!

The very first day of immunotherapy, we did Braden's pre-meds, began his morphine to help with the pain and started the therapy.

Oh friends...I have held my son through more than I could ever explain...there have been times that I have held him not certain he would survive until the next day...

Nothing...NOTHING compared to this therapy.

It was beyond horrible...our son screamed in my arms and was shaking in unspeakable, shocking pain. 

Our nurse kicked into action and immediately adjusted pain meds, I held him and rocked him and talked to him and told him how we were trying to help...we would help. He looked at me while his eyes showed complete terror, and he begged me to make it better.

I tried to be calming, but tears were in my eyes and my heart was falling into pieces.  It was simply horrible.

And then...he couldn't breathe...anaphalyxis.

We shut it down, administered the epi-pen, we needed to follow it with a second, and were about to head to the PICU when he started recovering.

That was an awesome hour.

(more thick sarcasm)

It was the most horrific thing I have ever witnessed with Braden. 

I had to fight like hell to get the docs to analyze why it happened and what we could do to try to fix it for the next day. The docs wanted to just scrap immunotherapy for Braden without finding out what happened and why. Our nurses helped me fight.

We had a plan, new pain meds...higher dose of pain meds...by a bunch...multiple pre-meds for the allergic reaction...slower administration rate....we were ready.

Our KC oncologist walked into the room the next morning and said,

"Well...I heard what happened yesterday and you are getting exactly what you wanted!" 

(he didn't agree that we should be treating since he was showing no evidence of disease)

And I said, "Stop right there....don't you DARE tell me that I wanted to hold my son while he writhed in pain and couldn't breathe...I'm trying to save my son so back OFF of that line of thinking or leave!"

He backed off...

and likely saved his family jewels. :)

Well...we were able to make it through the rest of the round running it as slowly as possible (not getting the entire dose in but getting most of it in).

Then two weeks later, we came back for more...

Second round started....

Unknown to me, the docs had not ordered Braden's meds that kept him from going into anaphalyxis round the clock like they needed to be ordered. 

One of the nurses even questioned it but was told he didn't need it.

So...he had an anaphalactic reaction again...

in the middle of the night...

not a good time to have an issue, apparently.

They couldn't get the fellow to answer his pages to get orders on what they should do.  So after the second time they paged, I got angry and insisted that they shut down the therapy and administer the epi-pen. I told them if they didn't, I would do it myself.

They did it.

The next morning, our oncologist came in and said that was the end of Braden's immunotherapy.

I let him have it...

I explained that it wasn't our fault...it was because HE hadn't ordered the right meds and they had been negligent.  I walked him through every step and told him ever "oops" that resulted in this reaction putting my son's life in danger.

I also told him that I had to order them to shut the meds down and administer the epi pen because they couldn't get ahold of the fellow in the middle of the night.

And he said he would check...and left to do just that.

In the meantime, the doc on the floor came in and told me that "Braden' hadn't received enough of the medication during the first round and this one day of his second round for it to do any good so we should just stop therapy all together".

I told him I wanted to see the data that showed that one must receive "x" amount of the immunotherapy before it wasn't useful...

...knowing that data didn't exist.

So I won that battle easily! :)

Then our oncologist came back and apologized and told me I was right and that the meds hadn't been ordered or administered...but that we should stop his therapy. It was just too hard for Braden.

Ummm...wouldn't be too hard if you did your job and gave him his meds!!! 

Asshat!!

I pulled out my copy the protocol (pretty sure at that point he was wishing he had NEVER given that to me)

...and I read all of the conditions which could result in him not having his therapy...the reasons to shut it down...the only one he had met was the anaphalyxis deal (and I agree it's a big one) BUT if they had given him his meds, we wouldn't have had that problem.

And I had the world's best nurse there to back me up... :)

To sum up, I argues that they had not given him the meds to prevent the reaction (even when questioned), when the reaction happened I had to tell them to shut it down and give the epi-pen (last time I heard, parents shouldn't be the ones directing the medical care because the fellow is "too busy"), and lastly I was the one reading the protocol to the doctor because he hadn't read it (he admitted it...he hadn't read it, good thing I had read it...every page) to prove he was wrong... 

Our oncologist and I debated and argued and fussed and finally out of frustration, he got up to walk out...

That's when I shouted, "I AM TIRED OF BABYSITTING YOU!!!!"

He stopped in mid-step...

and again I said, "I AM NOT KIDDING!! DO YOUR JOB! JUST DO YOUR DAMN JOB!!! I'M TIRED OF BABYSITTING YOU!!!!"

He continued to walk... 

probably a good choice.

And...I refused to allow him to see my child ever again. 

And the hospital refused to give Braden a new oncologist...stupid rule

...so we got that changed.

It took a year, but we got it changed. :)

We finally got a new oncologist in KC and  I LOVE her!!  SHE ROCKS!!!!

And...that was only round 2 of therapy!! :) LOL!!

3 more to go...all three were filled with multiple ridiculous "you have got to be kidding me" moments including finding out that the hospital had given him a medication that was forbidden to give prior to immunotherapy because it may prevent immunotherapy from doing any good, not just ONCE, but TWICE!!

Our nurses caught that one..

And it involved us calling the NIH to see if it was even SAFE to proceed.

That resulted in me fussing enough that the hospital did a review of systemic procedures and made changes so the slip up in communication wouldn't happen again.

And trust me, I tried to move hospitals for therapy, after refusing to see our doc again, but  because CMH had been the hospital to apply for the compassional care access, they had to do the therapy as that license number was non-transferrable.

We got through all five rounds...we made it!!  Only because of our nurses who watched out for Braden! I trust them completely!!!

The therapy was horrible and nasty and awful for Braden...and it was horrible and awful and nasty systemically with the hospital.

Since then, I have to tell you that the hospital took my concerns VERY seriously and they were extremely transparent and they have listened, found the weaknesses and fixed them.

I appreciate that so much!! And I am building trust with them again.

And thanks to our new oncologist, Dr. Neville, I trust them even more! She really IS great!

I have ALWAYS had faith in our nurses!! They were the reason he made it through all five rounds...I LOVE THAT TEAM OF NURSES!! They are the BEST in the world!! Seriously!!

We ended with round #5 of immunotherapy in room #8...the same room he was diagnosed in.

Full circle!

TAKE THAT caNCER!!

And after we got through immunotherapy, we still weren't done.

Next stop...ABT-751! :)

And the biggest fight yet... (not with a doc...but with a pharmaceutical company) but I'll save that one for tomorrow! ;)