Sunday, June 30, 2013

and then....

It just doesn't seem to end.

We got the results from Braden's bone marrow and got the PERFECT disease.  WOO HOO!!

What a HUGE relief...or so I thought.

SO...I emailed our team in Philly and they told me that they were doing further testing to see if Braden had a form of pre-leukemia and that would take 2 weeks of wait time for the results to come in.


And damn....I thought we were in the clear.

So we wait, but...there's more...


We go to Philly for scans on July 16-17...scared out of my wits but hopeful. It's entirely possible it could be in his body but not in his marrow so there's another scare.

We know that Braden can't continue the treatment he is on right now because it's either a toxicity or it's not working any longer....awesome.

He's been on that drug for almost 2 years and was supposed to have it for a little over one more year. The irony is that we fought to keep it and now we lost it during the same time frame they were scheduled to take it from us.

I keep thinking that we must have fought for it so that another child (because all the kids taking that drug get to keep it now because of our fight) needed it and it will help him/her.  It had to be for some reason because it was quite a battle with Abbott Labs.

SO....the question is this. IF scans come back clear, he could qualify for a different drug that is being given to children that have neuroblastoma and are in remission.

BUT...his blood counts have to come up within 120 days and if it's longer than a few more weeks, we would have to repeat the bone marrow aspiration for him to qualify AND I haven't had a chance to fully review the data yet....

Well..I've had a chance. I just haven't.

I've been pouting and sulking and worrying....

and detouring!!

There's no rush because he can't qualify right now anyway until those platelets come back up so I'm choosing the later list of things to do. I ROCK at at them ALL!  But...I'm especially good at pouting...

There's a reason.

This new treatment could be done in KC which is nice BUT it means our Philly team won't be in charge of our treatment plan.

I really didn't realize how big of a deal that was to me, but it's HUGE!

Dr. Mosse has been our saving grace and that team has my complete trust...100%.  Okay...97.999%...I'm always skeptical of everything so I need a little room for that. ;)

On the flip side...I give Dr. Neville in KC the same amount of trust...she ROCKS and I absolutely adore her AND believe in her work.

I am literally mourning the potential loss of Dr. Mosse and team as our Principal team.

And at the same time, I'm thrilled to think Dr. Neville could be doing that role...she really is amazing.

So to transition my heart and mind, I'm pouting, sulking, worrying and most importantly...detouring. I need a break. I've been working 24/7 for a whole lot of months and the boys are off school and deserve to have a mommy who plays with them so I'm taking a break..a much needed break....but that break is for multiple reasons, not just about playing, it's also about sulking and pouting and worrying! :)

It's soooo complicated! LOL!!

In the meantime keep those prayers and hope coming in the event that he can qualify for this new treatment so we can really consider it. I just can't wrap my head and heart around hoping for it until it's even a possibility with clear testing results for the pre-leukemia, and clear scans, and....information about this drug that makes us think it's reasonable and helpful.

It's a roller coaster...this entire nearly 6 years of crapfest has been a roller coaster BUT...

we are blessed to get to ride...

The alternative is he is an angel and we don't get to even try.

We are VERY fortunate and that thought never escapes my head and heart.

And it also never escapes my head and heart that this is a REALLY messed up think to have to be grateful for... suck.

And we will keep fighting you with everything we have...forever.

Keep hoping!!