Thursday, September 13, 2012

Trying to Stay Calm

I had been waiting to write a blog update for a few days as we waited for MRI results.  Unfortunately, we did not get the best news, so I just have to get it out.

There is a spot on Scarlett's MRI.  They don't know what it is.  It is most likely a blood vessel that looks a little strange; as the NP scrolled through the slides from the MRI, there was evidence of a blood vessel leading right up to the spot, so it could just be part of that vessel.  Lucile Packard Children's Hospital (Stanford's children's hospital, where Scarlett has had all her oncology treatment) brain tumor board has reveiwed it, and the gut feeling is that it's a blood vessel.

But maybe it's not.

It could be the start of  a tumor.  It's too small to do much about at this stage.  Scarlett's neurosurgeon at the other hospital is being told (the NP wanted to warn him in case he read it here first...)  We will wait 6-8 weeks and get a new scan, which will hopefully help give a concrete answer.  If it is a vessel, it will be the same or invisible.  If it is a tumor, it will be pretty unmistakeable by that point.  Until then, we just have to wait.

Because she knows us very well, Scarlett's NP knew we needed to know what the plan would be if it is a new growth.  At this point, a new or recurrent tumor in the location we saw today would be operable if it were larger.  Once it was removed and biopsied, because Scarlett had such intense chemo already, the next step would be focal cyberknife radiation.

It is so much to take in, and even harder because we don't really know if there is anything to worry about.  My heart dropped and my eyes filled with tears as soon as I heard the NP's voice change to the "something to tell you" voice.  I know enough about the common progression of these tumors to know that any hint of a recurrence is bad news.  Very few children survive the first tumor, and even fewer make it through a second.

I'm not sure how to go 8 weeks patiently.  We are busy enough to bury ourselves in work, school, therapy and blood drive prep (Oct. 20!!) but there is no way to erase this from my mind.  I deelpy hope this is another bump in our road that will pass uneventfully.

It's been a rocky few weeks in general.  We have had to make some big decisions that are exhausting to deal with.  First, we had to leave her current audiologist.  We have dealt with months of problems, capped off by a very upsetting cancellation of a sedated test after we were not told the time had changed.  We will move her services to the other hospital, which is closer to her school.

We are also struggling with what to do about our health insurance.  We have had insurance through Chris' job at Starbucks for the last year, in addition to Scarlett's state-provided coverage.  It is decent coverage, reasonable premiums and only requires 21 hours per week of work.  It would seem like he could stay there, but we are really struggling with the time.  His week is back-to-back school and appointments, followed by three days of mind-numbing, on-your-feet work.  He needs, and deserves, a break.  We had hoped that my new job would have reasonable benefits to allow Chris to quit so he could take on Scarlett's care as the full time job it is.  Sadly, my district offers only painfully high-cost health coverage - over $2000 per month to keep Scarlett's doctors.  We have investigated all the alternatives we can think of; we were denied for independent coverage due to Scarlett's preexisting conditions; we may have options through our university alumni association eventually, but they said we would need to exhaust Chris' COBRA benefits first in order to qualify with her history.  I am not sure how we will proceed yet, but I hate seeing him exhausted week after week with no time off.  Since we have been through so much over the last two years, we really value the time we have together as a family, even if it is just to be home together, and a change in Scarlett's scans makes that even more critical.

There is a lot to consider in the coming weeks.  On the plus side, Scarlett is making amazing progress at school, which I will share more about in the next few days.  Seeing that helps to drive our efforts, and reinforces our confidence that this crazy schedule is worth it.

We are focusing on getting Scarlett's birthday party/blood drive ready.  We are still looking for raffle items, which will be used to help raise money for the Pediatric Brain Tumor Foundation.  If you have something you would like to contribute, please let me know at scarlettgrace2010[at]gmail[dot]com.

16 comments:

Beth Chupp said...

Stay postive! Im almost 100% that its just a vessel, imhave that feeling! I know the wait is rough for a new scan if you wanna talk just hit me up. Ill keep her in my prayers as well as you guys and these tough decisions!

Jen D said...

My heart is hurting for you. So much love and prayers for you. You can do this.

April said...

Sending lots of love and positive energy her way and yours.

Jennifer said...

I can't imagine the feeling of your heart dropping - I'm so sorry you have to go through this worry and then wait ANOTHER 8 weeks on top of that. I will send lots and lots of loving thoughts and healing vibes Scarlett's way. And of course strength to your family for all that you do for Scarlett and for each other. You are all truly amazing. <3

andrea.nicole said...

I will pray I can't imagine how hard the wait must be :(

Meagan said...
This comment has been removed by the author.
Meagan said...

E-hugs and positive thoughts to you all. I hope you're able to figure something out with the health coverage soon.

Desirae said...

Wishing I could just hug you guys. Sorry you didn't get good news. :[ Hope something works out with insurance stuff, too! Thinking and praying for your family.

The Herman Family said...

This was the only option we had for my son. http://www.mrmib.ca.gov/mrmib/mrmip.shtml
Also if you qualify http://www.healthyfamilies.ca.gov/Home/default.aspx
AND don't forget the med cal waiver.... if you don't qualify for med cal.

Look through this too. http://www.lpfch.org/californiaservicesystem/servicesystemreport.pdf

Praying for Hope said...

I'm so sorry you're dealing with this. Keep focused as much as you can on the positivie and the every day things like Scarlett's progress. As much as you can, keep yourself out of your own head. It's too easy to get stuck in there and have the worry bounce around until you're sick with it. Keep looking out and up. There are people everywhere pulling and praying for you. This little girl is going to thrive.

Mommato3miracles said...

praying and then praying some more. For peace, for strength while waiting the next few weeks, for a new insurance plan to become possible. And praying for your miracle girl

melissa3075 said...

Is there a way to get a scan sooner than 8 weeks from now? I would be a mess and DEMAND that they do scans weekly or every 2 weeks at least in order to monitor the potential threat. They need to stay ahead of any growth!!

I am so sorry that you and your sweet daughter are going through all of this. It is all so unfair. I hope with all that I have in me that this is nothing more than a blood vessel! You are in my thoughts and, as always, I am cheering for Scarlet

Kate said...

I am deeply sorry about the abnormal MRI results, but I am very hopeful that the tumor has not recurred. I do not know what else to say, aside from thank you for keeping us updated, our prayers are with Scarlett and your family.

Beth.. One Blessed Nana said...

praying for you and for that precious little girl! Keep your eyes on Jesus - He is there for you and will walk beside you during these hard times. Keep your faith in Him!

Beth

http://aninstrument4hisglory.blogspot.com

Darla said...

I am worried for you guys but really hoping that it is just a blood vessel and they are saying it probably is!

Mrs.Andrews said...

Praying with all my heart that it IS a blood vessel. I am so sorry that you guys are having trouble with insurances. that is the LAST thing you need to be dealing with. I know that there are ups and downs... But I pray for a thousand more ups!!!