First Oncology Check Up

Nora is doing wonderfully.  She is such a bright, beautiful light in our lives. It is hard, sometimes, to forget what this year was really like. Deep down inside of the day-to-day. I don't want to remember those feelings and think of the times that I cried in the produce just about every department of Giant Eagle. I don't want to remember the nights I couldn't sleep for hours,  knowing that I needed every second of sleep I could get just to survive the next day. I want to forget the 50+ times I watched an adult, dressed in a disposable hazmat suit, hook my baby up to chemicals they were CERTAIN not to get to close to. Of course, I agree they needed to be protected, and I applaud their precautions, but do you know how strange and sad and helpless that feels?  Knowing that what is going into her veins is so dangerous. It is a constant question in your mind, "Am I doing the right thing?"

It wasn't safe. None of it was safe.  But, it was necessary. And as scared and anxious as this past year has made me, I am so grateful for the medicines and the technology, and the medical professionals that have made it possible for me to watch Nora play in a tent on the living room floor with Heidi last night.  For without them all, I wouldn't have heard her scream , "Mooommmma" at the top of her lungs when I walked through the front door last night. I wouldn't have gotten to watch my dad pick her up this morning when he got to my house or hear her laugh while the dogs lick her face (yuck!) after she eats a banana.

There is so much that I want to forget, but know I never will. There are a few memories, however, even in the thickest of struggle,  that I want to remember forever.
One of those moments was on the day that Dr. Shaw came to our room and told us that Nora's bone   marrow was more  than 50% disease. He wouldn't give me  the number because he said it didn't matter what it was (which makes me think it was pretty high). That punch to my gut hurt as bad as the initial one 3 days before. That is a moment I want to forget. But the moment right after , when my friend Starlene grabbed me and literally held me up as I leaned  into her with rubber legs and sobbed into her shoulder. That is moment I find to be beautiful. Even though I wish it never had to happen, I have to hold on to the times that have lifted my heart.

Our first full day home from the hospital, on a Saturday, when Dr. Shaw called and told Adam that the email came from the lab about Nora having the N-Myc gene amplification (which would have made her High Risk). We were sent home on a Friday night, and weren't expecting to hear back from the doctor until Monday at the earliest. The girls and I were in Heidi's room playing and the house phone rang. Adam ran to the doorway about 2 minutes later and said "She doesn't have it." I didn't have to ask him who was on  the phone or what he was talking about. I could literally read the relief in his face. I dropped right to my knees  and asked Adam and Heidi to pray with me. They both did without hesitation. We sat in a circle on Heidi's purple carpet, and we prayed out loud. I want to remember that moment forever.

The time in the recovery room, when we had a new nurse waiting with Nora to come out of anesthesia.  It took her a longer time than usual, and we chatted with him awhile. When Nora finally did wake up, she was pretty grumpy, and Adam and I worked  together to calm her,  change her, feed her and comfort her. This man, who was a literal stranger to us both, told us that he was mesmerized by the way Adam and I treated each other. He said he has never seen parents in this kind of stress work so well together and he told us he wished more families he saw were like us. That  is a moment that will stay with me, and I am glad.

The countless times that Nora has hugged nurse Jen (I guess I should just start calling her Jen haha), the hundreds of plastic Mardi Gras beads she has worn, the baby dolls she has carried and hugged, fed and kissed, the times she out ran Heidi or jumped off the coffee table with her fearless energy. These are the times I need at the forefront of my mind...to remind me that fear can't stop her. It won't stop her. She has had plenty of  reasons to cry and no one would have blamed her for being scared, but she wasn't and she's still not. What parents have leaned on their 15 month old for strength? This one has.

Nora is a literal light to the world, and not just to me alone. We had several doctor's appointments this past week. It was truly awesome to see how many adults at both the pediatrician and oncology offices wanted to get a glimpse of Nora. They couldn't get enough of her sass, her beautiful (and still sparse) hair, how much BOTH of our girls love on each other. Their bond is a thing of beauty 90% of the time. That is, until it is time to take turns spinning on the computer chair.

We learned a few things at the oncologist's office on Friday:

• Nora had a perfect CBC (complete blood count). She is also still incredibly brave and tolerant of needle pokes. She did NOT get that from her mama. 
• Nora's abdomen feels normal. There was no obvious swelling, and I can vouch for the fact that SEVERAL doctors pushed incredibly hard on her belly. I thought the PA at Childrens was going  to feel the bed mattress through her stomach before the exam was over. Our brave girl didn't even flinch.
• It is possible that Nora's tippy toes walk is a small side effect from chemotherapy, but it should take care of itself. Her leg muscles are also able to support her on flat feet, so there isn't much to worry about there.
• Nora will need to have BOTH a CT and MIBG scan in February. Because she no longer has a port (which is awesome), she will need an IV the day before to get a nuclear medicine injection and a second IV the day of the scans. Bummer, but we got  this.

We go to Children's Hospital to see the dentist today. Teeth and enamel are another thing chemo can  destroy. Nora seems so young to be going there, but hoping they will just be painting some flouride on her teeth, counting them, and sending us on our way! Also hoping Nora doesn't mind any of it.

We also have a few gifts to drop off today. And  by a few, I mean several hundred.  I will make a separate post about that soon!

Thank you so much to everyone who has kept us in your prayers. We have been doing well, all things considered, and watching our girls grow up together is the greatest gift from our Maker we could ever ask for! We will not waste a single moment of a single day being ungrateful.

I never post anything about politics (see my previous post haha), but I do have to say that, as scary and  uncertain as this world can be, I do believe in the goodness of people.  There will always be exceptions. There will always be evil and greed and deceit. I realize that. But I have also realized this year that most people are good. Most people want to help.  Most people want  to love and be loved.  Most people want what is best for everyone, even if they aren't sure what exactly that is.  We are human beings. We are seriously flawed and not a single one of us is perfect or thinks/feels/sees/acts as such.  We are all in this  same life on this very same earth together. I'm not sure why we can't lead with love.

I hope my girls will make this world a better place. I pray that they will not only find, but harness and spread peace and understanding. I know that they will lead with love.