The roller coaster...

It's been a roller coaster. That might be the only way to describe it. The more i compare the 2, the more accurate it is.

Swinging in the back yard after our CT scan...

The ups and downs (the most obvious). They are real. They are around every corner.  They are a reminder that it is not over. They keep you on your toes. You aren't sure how many more there will be or when they will come exactly until you are standing in front of them, along for the ride.

The lows are February 23rd. Hearing the words "It's cancer." They are February 24th, finding out that it is not just one treatable mass, but millions of spots in her liver, lymph nodes and bone marrow. They are February 26th. When your once perfect 4 month old's oncologist tells you that her bone marrow is more than 50 % disease. They are the 7 day wait to hear whether or not she is high risk. They are May 3rd. Holding your 3 year old in the ER with a face covered in blood while your 7 month old tosses and turns in room 936, unable to get comfortable. Waking up at 1:00am trying to comfort a baby who is vomiting up stomach acid for 2 hours straight, holding onto you, waiting for you to make it better-as you sit there, helpless, knowing that you can't.The lows are low. They keep you awake at night and flood your thoughts during the day. Even when you are in a conversation that has nothing to do with her, it's all you are focusing on. All day, everyday.

The highs are March 5th, when her oncologist calls your house to let you know that she shouldn't need stem cell or bone marrow transplants. May 18th, when you hear your baby's tumor has shrunk remarkably. They are May 20th, when you hear her abdomen scan result was negative, meaning there were no signs of active cancer cells left in her liver or lymph nodes. They are days like May 22nd, when you stand in a fire hall, in the very same room you married your soul mate, realizing the love that surrounds your family during the darkest days of your life. They are the times you open a card inspiring you to push on, even when you feel like you reached your limit. They are the times when someone tells you how strong you are, when you feel like you broke 3 months ago, and are still putting yourself back together.

Just moments after hearing the great news about our CT scan!

The turns. This journey has taken us many places-emotionally and physically. The turns are inevitable. We have been through every emotion on the spectrum. Adam and I have seen each other in our most raw state. We have been there for each other when no one else could possibly have understood our grief. I was at one point worried what this kind of stress could do to our marriage, but each turn actually brings us closer together.

We have seen things I could never have imagined. The good in people, the strength and beauty of the patients in 9B, the kindness of strangers. This journey has taken us into our deepest vulnerabilities. Being the recipients of so much help and kindness is very new to us. It has stopped me in my tracks and  I have been left speechless more times than I can count in the past 3 months. I remain in awe of how deeply Nora's story has touched perfect strangers. I have never truly been on this side of charity, and as uncomfortable as it can be at times, it has made my heart melt over and over again when I see what humans are truly capable of, no matter what they try to tell you on the 11:00 news.

Uncle Dave is here!!

The ride. It is wild. It is unpredictable and it is scary, but it will come to an end. I can't say it's a ride I would have begged my mom to go on at Kennywood, but I can say that once it's over, I will be proud we made it through . I will be grateful for the support of our families and amazing friends, and I will be so excited to get off the ride and greet our new cancer-free life with open arms.

There is always something to take from every experience, good or bad. I have learned that it is OK to cry. It doesn't make you weak and it doesn't mean you gave up. Sometimes, you just have to cry. I have learned to trust myself and the decisions I have am forced to make for Nora and our family. My instincts are usually right and it's OK if I make choices that aren't popular. I am still learning to take criticism with grace and to accept help when it is offered.

Meeting Chris Stewart when we got to our room

He was the starting catcher tonight!

Here we sit. Round 5. We are officially more than half way done. All we can ask is for your prayers to see Nora through to the end of this ride.

Round 4

Awful. Last week was awful. Actually, that might even be sugarcoating it a bit.

Tuesday we checked into the temporary Oncology Clinic (the clinic in 9C is under complete renovation until the end of the summer). Check in was fast and smooth and Dr. Shaw met with us to let us know the plans for the next few weeks.

We were in our room by 1:30 and Nora's first treatment started at 3:00. Her second treatment was at 4:00 and her last one (the 15 minute hot pink drip from hell) started at 5:00. By 5:15, she was done with chemo for the day and seemed to be her normal, pleasant, happy self. About an hour later, she just couldn't get comfortable. She was super grumpy and wouldn't eat or drink anything. My mom came and brought Heidi with her for a visit and volunteered to hold Nora in the room so we could take Miss Heidi down to the atrium for some fun. (Thanks again, mom).

5 minutes prior to the ER

So that's what we did. We put her name in the giant lite bright. We ran the floor maze, we played hockey, we chased each other and laughed. We actually almost forgot we were in the hospital for 20 minutes. Then it happened.

I turned my head away for one second to line up a hockey net across the room for Adam to take a shot. Boom. Sounded like a typical, clumsy Heidi fall. Then I turned and saw the blood. Can't say I will ever be comfortable around large amounts of blood, especially when said blood is coming from my baby girl's face, so I will spare you the details, but let's just say by the time I carried her to the elevator (maybe 50 feet away), we both looked like Carrie on prom night. While we did get some preferential treatment because we had another patient in 9B (and my BFF Kim's awesome cousin Angela just so happens to be a nurse in the ER), we spent the next 2 hours or so waiting for the great "stitches or glue" debate to be settled. Heidi's eye was glued shut and we walked back upstairs with her bag FULL of toys, gifts, and bloody clothes. 

Lots of blood for such a little cut.

I will skip the tale of me getting locked out of the hospital after walking Heidi to the car, and fast forward to 1:00am, otherwise known as the moment all hell broke loose.

Nora started rustling in her crib and proceeded to projectile vomit all over herself, her blankets, sheets, port cords..basically anything in a 3 foot radius was fair game. She did so for about 2 hours straight. She was given her anti nausea medicine, but it didn't seem to cut it. She was scared (I was too) and shaking. That was the first time since our original hospital stay that she cried out of pain. My heart broke all over again. After we got her cleaned up as best we could, we finally found her nurse and asked for more Zofran to try to take the edge off. It seemed to make her comfortable enough to rest for a bit, but sure enough-vitals were due to be checked 30 minutes later. Needless to say-it was an exhausting and emotional night-one I hope to never see again, but fear I should prepare myself for in the future.

The next 2 nights were less eventful (thank goodness), but she was not my pleasant, happy girl.

After seeing her like that, my mom explained that my dad also felt the same way after his chemo treatments. He said it was hard to explain-just complete discomfort. Even your hair hurts. You can't get comfortable. Nothing feels good or right or safe. I can't even imagine how scared she was on Tuesday. My dad, although I wish he never had to experience that, at least he understood what was happening. At least he knew it would eventually go away and he would feel better. My poor, sweet Nora was holding me so tight, waiting for me to make it better, and I just couldn't do it. I think that is, for me, the hardest part about this entire thing. Wanting to take it for myself. Wanting to wake up and be the one in the hospital bed, be flushing out my own port, be losing clumps of my own hair...the guilt that it is her and there is nothing I can do to change that. God, I wish I could change that.

Mother's Day on the front porch

It was so wonderful to come home. Nora seemed to feel much better once we were home, and she certainly slept better there. In fact, by Monday, she was her happy self once again. She has some ulcers in her mouth (thanks, chemo!) and no matter how many showers she gets, she still smells a bit like medicine, but she is home. We are all together. Under one roof-with 2 annoying dogs, a half-done addition, laundry that just won't do itself-no matter how much I ignore it, and dinners that need made-no matter how tired we are. I love it. 

 

This entire time, I have been searching for the reason this could possibly have happened. I am looking for the lesson, the connection, the understanding. I'm sure many people believe it was just science. Scientifically, 600 kids are diagnosed with Neuroblastoma every year, and that is just a lottery Nora won lost. And maybe that is the case. That's not good enough for me though. There are many things to take from this. I feel like I could write about them for days, spread out over 20 blog posts (and maybe I will...). Sure, most of them are very cliche. But it's amazing how different a cliche can become under different circumstances. For example- "Live in the moment." It is overused and underappreciated. However, I have found that it takes on a whole new meaning when you are actually face-to-face with the realization that your moments are truly numbered. When they are fewer than you could have imagined and more precious than you ever considered. So, please live in the moment. Love in the moment. Soak up your babies and your parents and your siblings and your friends. Please don't take anything this life gives you for granted. I know I did.

Nora's Mother's Day projects @ the Open Studio at CHP

Nora will have her first follow up scans next week. Please pray with us that Nora's tumor will be operable before we start Round 5. Please pray that all of her treatments and these dangerous drugs were the right decisions. Please pray that my girl will begin a new life without so much pain and fear and isolation. We cannot thank everyone enough for your positive thoughts and continuing prayers for our family and this fight we are all facing. but more than anything-thank you for loving Nora like she is a part of your own family. We will continue to be grateful for your support until our last day on this earth.

At the Zoo with Emma & Ava

Impossible to get all 4 of them looking!

Heidi was pouting. What else is new?