Monday, February 25, 2013


I can only imagine how difficult it would have been to have a child with a brain tumor (or any rare condition) before the internet. Blogs and Facebook have become harbors of support for families like ours, and somehow, once you start, it's hard to stop looking for connections to others in similar situations.  It would have taken me years to figure out how to transition Scarlett off of the formula without the tube-feeding pages. I am a member of a Yahoo group for Pediatric Brain Tumors, with over 1,000 parents looking for some kind of connection, or offering their experience and support.     Someone might have something new to try, a new idea or treatment, a doctor we haven't talked with; others come to us looking for just that all the time, and we are all too glad to share. Outside of the hospital or special camps or conferences, it is the only place where we can find anyone who can commiserate with what we are experiencing.  People we have only met via Facebook and blogs know more about our daily life than some we see every day.  It is a community, with ties between parents, children and doctors that outsiders will never understand.

Unfortunately, it is also a group that experiences an inordinate amount of loss and grief.  It feels like each week, a new child that I have followed, rooted for and watched fight relapses...and now we are members of that group, too.  Last week, yet another of these amazing children found out that their treatment is not working, and the tumors have continued to grow despite the doctors' best efforts.  I have never met her, but I have seen pictures of her, read her mother's joys and worries, and waited anxiously for updates.  I will continue to read as her next treatment options are explored, if there are any, and hope that the next phase is as easy on her as possible.  And I will continue to fear that we are next.

There is an amount of distance I have to keep from these other children fighting similar tumors to preserve my own heart.  Maybe it is selfish, but I feel like I can't get too involved without it igniting more pain.  I read and reread updates, and talk about many of them around the house as if we are close friends, but have a very hard time connecting directly.  Very early on, Scarlett's doctor warned me of this; as I described one of the stories I had been reading, she gently said, "Be careful reading those."  I understood her implication: these are not stories that typically end well.  Their struggles are too personal for me; seeing other kids suffer brings back so many painful memories and fears from the not-so-distant past.  Even worse, it makes it hard to overlook the possible future we are constantly facing.

There is no denying that we are still living on the precipice of disaster.  Scarlett's first in-treatment MRI is Friday, and like so many times before, it will determine the next step in our lives.  We hope to see no tumor growth, just the same dark expanse where there was once a tumor, and where there should be healthy brain.  If just one cell remained, and if that one cell is impervious to this new chemo, we could be uprooted yet again, and the next step remains unclear. 

At some point last year, I thought we might just be in the clear, safe from what this tumor has done to us.  But since it reared it ugly head once again, I feel convinced that it will always cast a shadow on us.  Brain cancer is not who Scarlett is, but it affects her every single day.  Not a single day has gone by since she was two months old that I have not through about the tumor and what it has done to her.  I know the other parents share the same fears and worries, and I am grateful that they have chosen to share. 


aidkaid19 said...

This spoke to my heart so much. Prayers for you guys. I know these feelings so well.

Shan said...

Sending love and a lot of hope for good news on Friday.

child of God said...

The internet is a wonderful thing. I am glad to hear you are finding some good support groups. I do agree with your doctor, please be careful while reading these stories. Worry is not a good thing, Scarlett needs you to be fully focused on her and not the 'what if'. I find that children are super sensitive to their mom's feelings. I know with my kids, every time I am upset they would know and then become upset too.

Praying these scans are clear

Sarah said...

I feel your pain, I really do. I'm a heart Mom. My baby was born with a heart defect. He's had four open heart surgeries in his six years of life. I read stories from other heart mothers, one is waiting for a transplant, another had a transplant but it didn't work and she passed away. They are sad and some make me scared. We could be in that same boat at any time. It's a waiting game. A waiting game that us parents do not like but have no choice but to play. Hugs to you and good luck!

MC said...

Hugs, many many hugs. I pray for a clear MRI.

JAMBA said...

I've been following Scarlett's story for quite awhile now. Then, in June of last year, my 4 year old daughter was diagnosed with a low grade brain tumor. I know exactly what you mean about connecting with other families and how it's a double edged sword. Wonderful to be with people who understand what you're going through like no one else, but devastating when they suffer setbacks. Even if you've never met. I will be sending lots of positive thoughts your way on Friday as Scarlett goes through her MRI. We had ours earlier this month.

Mommy2CJ said...

The internet has been a lifesaver for us while dealing with our sons medical needs and multiple allergies. I have had this thought often myself. I thank God often for the gift of the internet. Many blessings to you and yours

TheCorbinStory said...

It has been over a year since I have checked in, and wow! How she has grown!
I second what Sarah said above: I also am a heart mom. I lost my son to heart defects May 2011 and it is incredibly hard to follow the stories of sick children. I keep my distance and try not to get attached to these children fighting for their lives because I cannot handle the grief on top of my own.

I am so thankful for the internet and our ability to connect with other families that "get it".
Sending love and hugs.
Corbin's mama.

Unknown said...

As a cancer survivor myself, I know exactly what you mean. There are days that I am desperate for that connection to someone who "gets" what I am going through. To read a story like mine. And then there are the inevitable losses. Even sometimes they are freakish losses, unrelated to the connected disease. They touch me in ways that are far too painful and I have to walk away. It is a tenuous line to tread between connection and overconnection. One that brings hope and fears in such crazy and volatile doses. I have been following your (and scarlett's) story since she was maybe 6 months old. My daughter is only a couple of months older than she is. Despite this recent development, I still see your story as one of hope. I pray for you that it stays that way. And hope that you can find more hope and joy in your connections than the fear. I try to tell myself it always takes people on both sides of the statistics to make them true when a "bad" story creeps up on me.