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?