Thursday, September 15, 2011

I Have a Radioactive Baby. Don't Make Her Angry.

Radioactive isotopes are floating through the veins of my darling little one. They are searching out and targeting specific cells. In this case, they are cancer cells because my darling little one was made extra special with an extra part. No not a tail or extra digits. She has a tumor above her left kidney called a neuroblastoma. And the treatment is surgery. In two weeks.

She is radioactive because tomorrow is a scan that is going to tell us if these cancer cells are anywhere else. We highly doubt that there are cells anywhere other than the localized mass that is 7x5x5 in centimeters. That is really big for such a small baby.

We caught it at the earliest possible age- in utero at 37 weeks. That was August 1st. Since then there has been the hellish balance of doctors visits, driving to Portland, my labor, her birth, taking care of ourselves and each other, oh and Grace, etc. We have since learned about the hurry up and wait lifestyle of hospital culture. Rush to the appointment. Wait 30 minutes. Admitted to the room by nurse. Wait another 30 minutes. I could go on, but reliving it all is agonizing enough with this headache I have.

After finding out initially that my baby had a vague, scary mass that needed testing I was a mess. And I'll be honest, I still get deeply depressed, feel guilt, and grapple with the endless worst case scenarios and what ifs.

Yet, we got to bring her home after delivery. I sadly did not think we'd ever get to do that the 3 weeks leading up to our delivery. I looked around my house at all the baby stuff planning how to get it back to the people who gave it, because clearly I wasn't bringing my baby home.

I was THANK HEAVENS wrong.

In fact, my baby girl Grace is so strong I forget she has this extra part of her. You can't tell from holding her. She can hold up her head and stand tall on her legs. She isn't in any pain from what we can tell, but she could be down the line. She could suffer from digestion problems and high blood pressure, and actually several other scary things that fall into the what ifs/worst case scenario pile.

So now we wait for test results, even though we are pretty sure there aren't any other areas of her with cancer. It's hard and you want to cry and bury your head and sleep through it all. But when you have an important role to fill and life to live it is hard to dwell. I have this adorable and perfect person I harbored and fussed over in the womb and now even more so.

Kris is aconfident and strong dad. He's a supportive and positive partner. Well, positive most of the time. We both go through highs and lows. Usually the opposite of each other, so we are helping the other one up. It's an especially bad day when we are both low, which is brought on by exhaustion most often, hunger, frustration, irritation, and being too busy, i.e. yesterday running around OHSU and Doernbecher to end up waiting for long boring periods of time (without coffee, which we both had withdrawls from) without entertainment and the added stress of breastfeeding in public to end on a low note with long ass drive home late in the evening.

But we made it through. Like we will make it through these next few weeks. Like we'll make it through her surgery on the 29th this month, her recovery, and the celebration of our cancer-free baby. It is a rare form of pediatric cancer, so you see what I mean about special. Grace is taken care of by an army, a fleet, sentries, flanks, and platoons of health care professionals who on their best days are amazing and on their worst just a little unorganized. The care we've been given has been stellar and continues to be. We've met angels who cared for our health, for our emotions, for our health insurance concerns, for our logistical planning and reducing stress, and for our education and advocating for the best care for Grace.

Anyone reading this, friend or stranger, I'd wish that you pray and think good thoughts for our family. Positive feelings and a support network can mean major strides in healing and keep us from falling to the lowest of lows. I suppose it is a part of our culture to be independent and not ask for help or not express need or weakness. I have a hard time fitting in; we need help in all different ways and some days we aren't strong, though we try to be.

I always wished when I saw stories like mine that it would never happen to me, but it has, and I think it was a challenge put before us because we are truly strong enough to meet it, though we hate it passionately, and to fight for it, though we resist and fear to. We have been blessed with loving family near and far praying and hoping good things for our family at it feels good to know that we are loved, even though most of these people haven't even met Grace, or Kris, or I in person before.

I'm not going to lie and say I don't cry. I'm not going to lie and say I don't fear the worst and the what ifs. But the best case scenario for a bad situation was handed to us, and for that I'm very grateful. And even so, even if it gets worse before it gets better, I have my best friend and husband there holding my hand and friends and family and a whole medical team behind me.

It will all be ok very soon. For now I'm going to go cuddle with Kris and watch shows, feed Grace and gaze into those beautiful blues, and for now, be normal and try to stay happy, because when I have a life like I do and the blessings and angels that I have, it is hard to not feel warm inside despite the fear of what the future may hold.


Mike and Melanie said...

Hi, I know you don't know me, but I am Mike Goodrich's wife. He is a really good friend of Kurt's. Our little four year old Kurt,(named after your brother-in-law) was also born with neuroblastoma. I am so sorry that you have to deal with this, but I am so happy that they found it early. Our baby boy was 10 weeks old and his cancer had already spread, so we did chemo and two surgeries. But now we have a happy and healthy 4 year old boy.
If you ever need someone to talk to that has been through something similar let me know, I would be glad to help! Good luck in the coming weeks, we will pray for your sweet baby girl.

Not So Anonymous Michelle said...

Sophie & Kris,
I got an email from my Great Uncle Lee and Aunt Dar regarding Baby Grace. I was moved to tears. I have two daughters and feel fortunate to not have ever had to deal with health concerns such as this. We had enough of a scare when our oldest was born with a vascular malformation (hemangioma) birthmark that covers most of one leg and part of a foot and buttcheek. Luckily, she has regulary visits every year or two with birthmark specialists to be sure it's not interfering with he growth.

So, anyway, we are family, somewhat distantly related, but none-the-less, blood relatives. I'd love to stay in touch. Let me know if you're on Facebook, I'll take a peek myself to see. My youngest is actually named Sophie too!

I offer our prayers and wishes for a speedy recovery for Grace. Best of luck in the coming weeks!