Sunday, January 13, 2013

Scanxiety...

It's scan time,

again.

The time when every parent of a child with cancer,

loses sleep,

their appetite,

and

their minds.

In 2007, when we were first told that Braden had cancer, we were expecting to hear THAT particular word least of all...

Initially we thought the concern would be pneumonia, again, it happened frequently... (I will tell you the story of the missed diagnosis and actual diagnosis someday).

Then we were trying to qualify for a new therapy...

my "mommy intuition" believed there were still cells after they declared him to be in remision. We kept looking for therapy and finally an opportunity presented itself.

We scanned to qualify for that trial, and instead found out that it was back,

and there was no known cure.

SURPRISE!

Damn cAncer!

We have been doing Braden's scans in Philly since he relapsed in 2009...

well....there was ONE time we did them here in Kansas City...

It didn't go well.

Remember when I told you about my hot buttons and that one was lying?

We always sedate Braden with IV Benedryl..works just like Propofal for him with no recovery, stumbly, bumbly, disoriented time.  It rocks!

He was asleep and in the MIBG machine when he woke up and tried to SIT up.

The machine stopped, we got him back to sleep about 5 minutes later, then they started the machine again and the rest of the scan went fine. It took about an hour and fifteen minutes with the reset time, normally it takes about an hour.

Next, they read the images incorrectly and had us completely freaked out thinking his disease was progressing.

SO we had to scan again in a month to check to verify if it was disease or not.  In the meantime, Philly had reviewed the scans and thought what they were seeing was NOT cancer and we should breathe.

RIIIIIIIIIIIIIIIIIIIIIIIIGHT! Breathe!!! :)

As we were trying to schedule those scans, the nuclear med department techs said they would NOT sedate him with IV Benedryl again because he moved too much and they had to restart the machine multiple times...additionally they said it took two and a half hours to do the scan.

KC said he would have to have a full sedation....and be stumbly and bumbly because of that.

I still don't know why they said that...the two techs had always been fabulous to work with...

and I might have been more understanding of their stance, IF it were true.

However, I would have still argued that it didn't matter how long it took if it made it more comfortable for an almost certainly terminally ill child, which Braden was believed to be at that time.

After all, we wait for the hospital all the time....and it's a lot longer than 5 minutes.

Thus, their lie initiated the following (and not so nice...sorry) response from me,

"BITCH........PLEASE!"

and then the immediate initation of actions that lined up with that thinking thereafter... :)

Long and involved story made very short, the "HR Deliece" requested an investigation and I made them check the time stamps on the images as well as the quality of the images (they would have been blurry if he had been moving).

The head of Radiology did so, and came back with her hat in hand.

Of course, they offered to do scans with IV Benedryl thereafter.

I don't think so....

If you are going to lie about something as silly as THAT, (I still cannot think of a reason why they did it...it served no purpose) I have lost all faith in their integrity so,

I'm good...

no scans in KC again.

Luckily, since then, we have needed to travel to Philly to get his chemo refilled for the next 3 month period and we scan every 3 months, so we just scan there.

Plus...he LOVES the really cool sculptures they have in the lobby at CHOP! He sees them and SPRINTS toward them the minute we go through the front doors! :)

 
In between those visits, we go to our hospital in KC for labs, HVA/VMA test (marker in the urine that can indicate nb cells are present), and physical exams every 3 weeks.

And we have a new oncologist here who I LOVE!!!!!  I feel happy about our home hospital again!! WAHOOOOO!!!

(minus nuclear med) LOL!!

I know you may be confused right now because I just said Braden is taking an oral chemo,

but his scans since January 27, 2010 show that he is in remission 

What??????

I know that seems strange but there is a very good reason.

VERY few neuroblastoma patients go into remission for a second time after a relapse.

There are so few that they don't even track numbers on that.

The fact that Braden is in a second remission is due to some very unique circumstances in which he has been the first child in the world to receive two major therapies for relapsed neuroblastoma patients,

And he responded favorably, which is EXTRAORDINARILY lucky!!!!

EXTRAORDINARILY!!! 

We are beyond blessed and we NEVER forget that!

...and then we fought for additional therapy after those two "first evers" to get him into a second remission...

and then we fought for additional therapies to keep him in a second remission.

See..of those children who achieve a second remission with neuroblastoma, the VAST majority relapse again within 6-12 months because...

their scans show no evidence of disease so they cannot qualify for trials as trials are designed for and written with parameters indicating the patient must show evidence of disease.

Well...it kind of makes sense...why do a trial with a kid who is cured?

Or so it would seem.

Now stick with me here aboard the Momma D Logic Train... :)

IF the vast majority of kids who are declared to be in remission a second time RELAPSE a THIRD time within 6-12 months, were they ever really in remission??

I think not.

It's just that the current scan technology we have cannot show cells below a certain limit... it doesn't mean they are not there,

just that the scan technology cannot pick them up to reveal their presence.

SO...doctors and patients think the child is cured when the child is not.

neuroblastoma is a sneaky, ugly, aggressive beast.

It is my mortal enemy...literally...

And fortuately, our oncologist in Philly (Dr. Mosse who is one of my Top 5 Most Admired People EVER) said that very thing without me even having to tell her my thoughts.

AND...she applied to get Braden into a trial for a drug called ABT-751 following his clear scans.

(there was another therapy we did right before that...story for another day).

It's an oral investigational medication (a chemo) that Braden drinks every day for one week and then  is off for two.

Abbott Labs makes this drug and it has helped some kids (like Braden) remain in remission...

HOWEVER, Abbott Labs is not going to be making this drug anymore.

I am supposing it's like most childhood cancer drugs, it didn't help a large enough population for them to make BIG BUCKS so they are cutting it out.

Grrrrrr.... Isn't ONE child enough??

CHOP (Children's Hospital of Philadelphia) and Dr. Mosse appealed to get Braden into this trial as they had just announced they weren't going to make it any longer.

Abbott Labs agreed to allow Braden in and they said they would make enough supply for Braden for 3 years...

Braden would be the last child in the world accepted for this drug.

Then, in October, we learned that they decided to only make it for him through June which is 14 months shy of what they promised.

WHAT????????????????????????

Needless to say, I have waged a one mommy war with them with some help from a few incredible people (that's also a story for another day, but it's a really good one filled with heroes) and we are appealing informally (it's not a law suit).

Braden has been taking ABT-751 for a year and five months.

I can't prove the drug is what is keeping him in remission, maybe he really IS in remission and the cells are gone...

BUT...they can't prove it ISN'T what's keeping him in remission...

...and I'm not gambling with my son's life...

Period!

(and at this point, I'm willing to bet that you understand why the title of this blog is No! SERIOUSLY, this is my life!) LOL!!

We have to scan every 3 months and his next scans are this week, January 15 and 16.

PLEASE send prayers and HOPE!

Scanxiety has arrived...

If he relapses a third time, Dr. Mosse has been VERY clear that any hope for a cure is gone.

I won't be able to update this blog from my phone while I'm out of town, but I will update our CaringBridge site.

If you want to check and see how his scans turned out before I can post here on Thursday or Friday, you can visit:
www.CaringBridge.org/visit/bradenh

It should be mid-afternoon on Wednesday when I am able to post so I will be off this blog for a few days.

We always wear our same t-shirts during scans...one is a Braden's Army shirt and one is a HOPE shirt (both are yellow because it's Braden's favorite color).

We invite you to join us in wearing yellow those days if you would like to support him.

I am extremely superstitious (I know it's stupid but I am)...and every clear scan, we've been wearing those shirts. :)

Thank you for your thoughts, prayers, love and HOPE!!

We never take clear scans for granted and I literally get physically ill every time we go, but...

We believe in miracles...

because we live with one.

And...thank you so much for reading this blog...

I do watch the number of clicks we get and it makes me smile when they go up.

It means people still care about Braden and there's NOTHING more important to me than my boys.

Thank you SOOO very much!!

And you always have my permission to share this blog with anyone...that's the goal..

I want to share it so others will read and become aware, question everything, laugh (hopefully), fight, and HOPE!

There are share buttons at the bottom of each entry (and some on the sides as well) so you can share it on Facebook, Twitter, Google, or email.

I'm @bradenshope on Twitter and I do follow back if you follow me but I'll be honest...I'm not a Twitter expert...I'm much better at Facebook but I try!! Remember, I'm old!!

and twitter-fused!! :) (get it?  confused/Twitter) ...yea...it was weak..sorry! :)

I would be grateful if you would share this particular post so even more people can send thoughts and prayers for Braden during scans!!

MANY thanks and lots of hugs!!

With HOPE,
D :)





10 comments:

  1. I will be praying HOPING and wearing my yellow for Braden....

    valerie

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  2. Will definitely be praying for NED as the result.
    Michelle McRae

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  3. HOPE for your little guy! Go Mamma Bear, keep fighting for him!

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  4. Just found your blog thru a friend. Will keep your family in my thoughts & prayers.

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    1. Thank you Nikki!! Those two things have gotten us to this point!! XO!

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  5. As always on scan days I will be wearing my Hope shirt! Hoping, praying, and believing from Louisiana.

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    1. Thank you SO much Suzanne!! BIG hugs! :)

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