Party Time!

6 days ago was a great day! We finally got the chance to celebrate our 2 amazing girls and their strength and perseverance throughout the tumultuous year they have both had. 

We made it!

We decided to celebrate their birthdays (FINALLY) as well as the start of a fresh, new year! We are so indescribably grateful for everyone's love and support this year. At our weakest moments, you gave us strength. When we felt close to hopeless, you let us know that we were not fighting alone. When you are put in a place of such humility, it is hard (at least for me) to accept that charity and kindness and move on from it.  I just couldn't let an opportunity go by without turning this enormous gift you all have given our family into something even bigger and better.

Invitation

So, since our girls are plenty spoiled and nothing feels better than giving (am I right?!), we decided to ask for some donations in lieu of birthday presents. Well, holy cow, did our friends and family pull through! Not only was it a great party with the best company around, it was our pleasure to pack the back of my car with bins full of fun surprises for the heroes that will receive them on the 9th floor of Children's Hospital.

Heidi pushing the cart full of donations

Nora giving Mike from Child Life some toys in the elevator

My heart is still so full just from the thought of those smiles!

 

 

With Nora being so little throughout treatments, she didn't pick out of the treasure chest much. We didn't have to worry about her anxiety about needles or self-esteem issues from her hair falling out, because she really didn't care. We did, however need to borrow a shirt when she got sick on both of the ones we had brought with us to clinic. We also used bubbles and balls from the distraction boxes before almost all of her procedures. (Sometimes I think those distractions are for the parents, too!) I can't even tell you how wonderful it feels to know that we helped to fill those boxes for the hundreds of little fighters that will be on the 9th floor this week. Makes my heart literally sing.

We wish so badly that we could have invited every single person who has been there for us this year. The cards, the meals, the surprises, the kind words, the spaghetti dinner, the PRAYERS across the country...we have been so touched by the kindness that has surrounded us...there will never be a way to repay it.

  

Wishing Lanterns

I created this blog for the purpose of informing our extended families and friends of Nora's progress and results, but it has turned into so much more than that. I had no idea how important it would be for me (and my sanity) to write about our family and the roller coaster of emotions this would put us through along the way.  Thank you for taking the time to read my (at times lengthy and rambling) thoughts. Thank you for being a part of our family, even if we haven't seen one another in years, or maybe have never even met. We are so thankful for you. You are truly and deeply loved.

Thank you for staying with us...for praying with us when we are scared and celebrating with us when we get good news! We hope that the good news continues forever, because our girls are party animals.

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.

best. day. ever.

So, I feel like most people have heard-either through Nora's facebook page or from a phone call or email, but Nora's slides came back clear. NO EVIDENCE OF DISEASE! We got that phone call that we have been waiting for since February 23rd. And of all days, it came on November 23rd. Exactly 9 months to the day from when this nightmare started, it finally ended.

Silly girl.

I am using the term ended loosely. I am completely overjoyed at this news. I have felt a sense of relief that I wasn't sure I could feel again, but I won't say that this has ended or that it is over. If I do say that, then I am lying. From MY standpoint, this will never truly be over. From the pediatric oncology standpoint, they may consider this over at 18. I am not in any way trying to be negative or look for pity, but the reality is that Nora will be in that MIBG scanner again. She will need constant follow-up blood work and urinalysis. She will need to have more bone marrow biopsies. I don't know all  any of the real details yet, but I do know that I am still scared. I will be scared for a very long time.

Thanksgiving toast to HEALTH

Pretty girls.

So...what do you do when you are scared everyday? You keep living. Some days are easier than others, but you try really hard not to let your worries affect your actions. You try to stop the fear from consuming you, because living like that isn't really living. And you know what? My baby girl didn't fight this terrible fight so that I would keep her on the sidelines or be afraid to live myself.

Thanks, Basil for the bath toys!

When I look at either of my girls, I see absolute beauty. The kind of beauty I see isn't anything people discuss when they talk about looks or features. I see the rawest, most complete beauty this world holds. The kind of beauty only an omnipresent, omniscient, omnipotent being could produce. A literal light shines off of them into my life. And that is nothing I will let fear control.

Recovering from anesthesia is no fun at all.

I am so happy that my girl does not have to wake up on Christmas morning and have a blood draw scheduled. We can stay out late at a Christmas party and not rush home to give her a painful injection. My baby had her broviac taken out last week. If she has a fever, we can give her tylenol, we don't have to throw her in the car and rush her to Children's hospital. Breathing is easier. I wouldn't say we are at 100% lung capacity, but are any parents really ever there? I think my own mom worries about me at 33 and my sister at 35. Trying to look at this for exactly what it is:
the best news we have gotten since February 23, 2016.

Hair Up!

I continue to think about the impact this has had on our lives. Talk about a test of faith! I lost count of the number of times I looked directly at the ceiling/sky this year and asked out loud, "why?" I might have meant- why now, why this, why her...it doesn't matter what I meant. I knew why. Because it is a part of her plan, and therefore a part of our family's plan. I am so grateful that I was raised a faithful servant of the Lord. Because without Him, I'm not sure how I would have made it out of this ordeal in one piece. I don't know what is going to happen in the future, and that is scary. Of course I have heard the statistics. Of course I know the risks. But I also know that my girl is in the hands of her Savior always. And THAT is how I plan to make it through today, tomorrow and every day after.

Our general thoughts about our first bath...

Thank you. I could type it 1,000 times but it would never be enough. During that moment in my life where the punch to my gut was so hard, so deafening, I couldn't find air to breathe, you all lent me yours. The dinners, the cards, the messages, the surprise gifts, the gift cards, the letters, and most of all-the prayers...they kept us going. To use a quote from my new second-favorite show (nothing will ever beat out The Office), "You all took the sourest lemon ever handed to me in this life and turned it into something resembling lemonade." I never thought that would have been possible. 9 months of terrified. 9 months of tears. 9 months of sadness...but we made it. And that is because of our warrior family. This world is so broken. It needs a lot of help. I will never deny that. What I will deny is that humanity is gone. I will deny that goodness doesn't exist. I didn't mean to look for it, but it happened to me. I hope you never find yourself in these shoes, but if you do, I think the world will smile at you also. I know that my family will. No matter what.

Kennywood Lights!

and the kindness continues...
After work a few nights ago, I picked up the girls. On our way home, I planned to stop at the grocery store because it was Heidi's day to bring snack to school. Well, Nora fell asleep. Really not wanting to wake her in the bright, loud store, I dropped the girls off at home with Ad and went to the store alone. For any mom of youngsters, this is like a mini vacation, is it not? I took my time, talked to my mom on the phone, and slowly weaved in and out of each aisle. When I turned around, a woman with an incredibly kind face was standing there. She was the kind of pretty that doesn't need make-up to be radiant. She asked me if I was Nora's mom and she handed me a $50 gift card to the store we were standing in and said, "Merry Christmas." I have always pegged myself the person who doesn't react appropriately to surprises. I cry, smile, laugh at all the wrong/weird times. Typically, a gesture like this would have brought me to immediate tears. I still can't believe I didn't cry in that store. If you are reading this, kind Jeanie, I ugly cried the whole ride home. I told you I would.

If you are in my closest circle of friendship, you know I am OBSESSED with music. Almost any genre, but most important, lyrics. I think these lyrics do justice to the 9 month journey our family has been on this year. I dare you not to cry...