No worries.

I have been meaning to post for awhile. Round 6 came and went this week and it was pretty uneventful. Thank goodness.

First time in the big girl seat!

Dr. Shaw, Nora's earthly savior, held her for the last time on Tuesday. He is leaving us for good, moving to St. Petersburg to bring his genius to other families struggling with childhood cancer. I love that he called her "monkey." I love that he spoke to us like friends and constantly reassured us that we were good parents making very hard choices. I love that he told us that he hates leaving in the middle of her treatment, but that he isn't worried about her because she has great parents with wonderful support. I remain so thankful for him. It's very strange to put so much trust into a perfect stranger. I don't know where he lived, his favorite food, if he got along with his neighbors, if he believed in God... But yet, I trusted him completely with my daughter's life. I really didn't have much choice, but it is so strange to think that I didn't know that he existed 5 months ago, and today I wonder what my family would be without him.

When I was in high school, a song came out ("Everybody's Free" by Baz Luhrmann) that I loved. (It's worth a listen, IMO)I have added it to countless "mixed CDs", and it has been on every generation iPod I have ever owned. I have always thought the lyrics-simple and spoken, not sung- were just so ON. I pretty much like every word in the song, but more than anything:

Guilty. Worrier from back in the day here. I worry about everything. I worry about things that will never happen and I worry about things that have already happened. I wish I was different. I wish I didn't have constant fears of my house burning down, car accidents, plane crashes, and the like. I am working on it, but it is hard to change that part of myself. Maybe I find some kind of sadistic comfort in worrying? Like, if it is currently in my mind, I can somehow stop it from happening? I don't know why I am that way. But, I think it is safe to conclude that it doesn't matter what I think about while you are drifting off to sleep peacefully, it is not going to change His plan.

Learning to trust strangers and take the good with the bad is only a small piece of this new life. I am so grateful for the love of new and old friends. I continue to be moved by words of encouragement and hope from people of all walks of life. I am inspired by the humanity I have experienced personally. It gives me such hope for my girls and the future lives they will lead. Now if only I could stop worrying that they will be worriers...

Thanks, Laura Lee.

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?

Politics

I have made it an absolute point to never discuss politics.This has been proven to be one of the best decisions I have made in the past 14 years. When I see people fighting over candidates and opinions...the name-calling, the shaming, the completely uninformed ridiculous statements made-especially these days in the undeniable INK that is social media/the internet in general-I remain completely confident that this has been the right choice. If I ever tell you who I think you should vote for-aliens have taken over my body. It is not me. That will never be me.
That being said-I feel that every election (including and especially the presidential ones) that I have been able to cast a vote in, the candidates are more "who can I tolerate the most off of this sad list of names and sure-to-be-broken promises" than they are "who is capable and honest and trustworthy." These questions and concerns are more important to me as each day passes, watching my girls grow up in a beautiful country that has the potential to be so much more than it is at the moment. But it is still a wonderful place. We are all so truly blessed to be Americans. To be born into this life and this country. No matter who wins this increasingly sad "race to the top," we all have the ability to make a difference-in our own lives and in the lives of our neighbors.

Bored at the hospital during Round 3

I am constantly reminded of this. Everyday. Sure, there is undeniable and often unavoidable evil in this world. But there is also good. Truly kind, amazing people. I am fortunate to know (and love) many of these people. I cannot tell you how many times I have been moved to tears by the kindness of friends and strangers alike in the past 2 months.

It would be easy to become overwhelmed in our new normal. The constant medical calls, bills, appointments, prescriptions, questions, opinions...I could go on. Some days, it does get the best of me. I question why us? Why Nora? Why *effing* cancer? But usually, her bright smile and seemingly unfazed attitude give me the ability to see past the crappy circumstances and see the true blessings we have in our lives. And trust me, WE. ARE. BLESSED. Our life these days is definitely more about perspective than it is about the individual cards in our hand. I am realizing more and more to look for the good. Even on my worst days, there is good. On the occasional days when I can't see it for myself, there is almost always someone to remind me of it.  I am learning (slowly) to let the negative opinions go and hold on to the messages of hope and strength. I am stronger than I ever realized. I just wish it didn't take this for me to notice it.

In the atrium @ Children's Hospital after Round 3

Sure, I cry. More than I would like to admit. Usually when I am alone, but sometimes when I am in a crowded place. My faith is strong, but it waivers when we are in the hospital-alone and scared. My outlook is hopeful, but I still worry about the future. I continue to pray that by the end of May, I am updating this blog with wonderful news of healing and confirmation that all of these treatments were the right thing to do. I constantly pray for our old normal to be our normal again, where our biggest worry is what to make for supper.

But, in the meantime, we will be living our lives. This is our new normal and we're not taking any of it for granted. We will see you at birthday parties and weddings, play dates and church. Until we hear differently from Nora's doctors and oncologists, life will go on as planned. If you are noticeably ill or contagious, we might keep our distance a little (we have common sense), but please don't act like we are on death's door. We're not. Nora is nothing if she is not strong. We are the parents of two beautiful girls who can and will experience beautiful lives.  To quote my dad's favorite movie "Get busy living, or get busy dying." We will be living.

Let's just pray that our new leader loves this country as much as Heidi loves her little sister. Because if that is the case, we will be in good shape for the next 4 years.

...though she be but little, she is fierce.

Round 3.

Here we are...back at Children's. It's day 2 of a 3 day stay. One of many on this new journey of ours. A journey that has been a true roller coaster-with good news and bad,  tears of both sadness and relief, and meeting wonderful, brilliant and caring people that I wish I could have gone my entire life not knowing. 

Today, we found out that Nora's absolutely amazing head oncologist, Dr. Shaw, has taken another position at a Children's Hospital in St. Petersburgh, Florida. I am terrified. If you have to hear the words "Your baby has cancer," you want to hear them from Dr. Shaw, or at least you want to hear that he will be the one taking care of your precious baby, seeing her through to remission and beyond. Even though he isn't leaving until the end of June, he reluctantly told us yesterday afternoon, fearing that we would find out through the grapevine. He told us how wonderful Nora looked, and how great she is doing, but the harsh truth remains-the man I put all of my earthly confidence in to save my baby is leaving. He will not be seeing this through. His expert opinion on her health and well-being expires in 2 short months. 

Nora will have a minimum of 8 rounds of chemotherapy. She will also need to have surgery to remove her tumor. A few scans and biopsies after round four (the first week of May) will determine the journey from that point on-but we will be fighting this fight until July at the earliest. July...it seems so far away, but I know it will be here before I know it. 

At least we have a great view...

I am envisioning good news. I do believe that her tumor has likely shrunk, and her stomach has definitely gotten smaller and softer. Anyone that has seen her can tell you that, including her doctors. She can (and loves to) put her feet in her mouth, and that NEVER could have happened 2 months ago. Not with that belly in the way. From the naked eye perspective, she is a picture of good health and to honest, shear beauty. I do believe things will be improved, but I cannot help my anxiety without seeing it myself. I need to see the scans. I need to see that tumor gone with my own tear-filled eyes. I need to see her liver without a single spot in it, and her lymph nodes clear and free of cancer. But, most of all, I need to see that bone marrow. It needs to be healthy. It needs to be ready to support my gorgeous baby as she learns to crawl and walk, and keep up with her big sister in our backyard. I pray so hard that it is healing. 

So, we will be leaving here tomorrow night with a better idea of how our next few months will be lived. In and out of this place every 3 weeks. Continuing our routine of injections and antibiotics nightly.  Keeping things as normal as possible for Nora and Heidi. Normal. Not sure I even know what that means anymore. There is nothing normal about this. But if this "normal" will mean that Nora can eventually leave all of this in her past with no memory of treatments or pain, than give me this normal. But please give me hope and some semblance of peace in May. Prayers and positive thoughts for clear scans are welcomed and appreciated! There is not a prayer in this world that doesn't mean EVERYTHING to our family.

With big cousin, Ava

6. whole. months.

I seriously cannot believe that my baby girl is half way to her first birthday. A day that I pray is filled with cake and balloons (somewhat deflated, just the way she likes them), party hats and sunshine, laughter and good friends. I cannot wait to let her soak in a warm bath tub with bubbles or take a dip in her pappy and gramma's pool on a hot summer day. I can't wait to let her get dirty and wash mud and peanut butter out of her hair. I truly took all of these things for granted with Heidi. Never again.

Nora has given me so many gifts in these 6 months. So many moments to look forward to and so many memories to look back on in such a short time. The thing I look forward to the most is watching her grow alongside her best friend, Heidi.

The two of them already have such a bond. I never expected to see it so early. I was holding Nora on the couch a few days ago and Heidi crawled up on my other side and snuggled in. Without a word, she touched Nora's face in a very gentle (very non-Heidi) way and smiled. Before I could catch my breath from the cuteness overload, Nora returned the exact gesture and emotion. It might sound trite- but it was, in fact, the most precious moment of my 32-year life. I'm sure there will be plenty more where it came from. I am also sure that there will be plenty of times they will want to kill each other over a broken toy or a borrowed sweater. But for now-I will soak in these moments as deeply as I can and pray that they never end.

 6 months.  26 weeks. 183 days. Cases of diapers. Countless bottles. Never ending loads of laundry. Smiles every day. Milestones met. Belly laughs and rolling over and over. She has made our family whole. She gives us light and love when times are not easy. She gave us sisters and bonds that will never break. She continues to give us hope. Our little Nora gives us everything and more. We are truly blessed beyond measure.

 

Round 3 starts on Tuesday. Prayers are welcomed and appreciated!

Side note: My Relay for Life team's annual dance is tomorrow. This will be our 16th year doing this fundraiser. 240 tickets oversold in 8 days. To say it is a huge success would be an understatement. The dance continues to be one of my favorite nights of the year for many reasons. It is always emotional and powerful, sad and wonderful all at the same time. This year, my little superhero will make it onto the big screen. Hoping I can hold it together and be strong just like Nora. See? I am still learning what has taken her only 2 months to master.

Here's a link to my original blog about the ACS, in case you aren't familiar.

Round 2...done.

Welp, she did it! 5 months old and you wouldn’t have a clue she has endured 7 bags of chemo in the past 4 weeks. She is truly a bad ass, my Nora Melita.

Getting fluids before chemo.

We checked into the clinic on Tuesday, March 22^nd. It was busy. I hate that. Not because we had to wait, but because that means there are many others out there, just like Nora. I hate facing this fight: these dangerous drugs, my baby smelling like chemicals, the fear of the unknown, the anxiety of waiting for results.  9C is a wonderful place I wish I never knew about. It is a place of bravery, and of love and hope that I never want to see again. Oh, we'll be back. On April 12th-if all goes well- but I still fantasize about waking up on February 23rd and realizing this has all been one bad dream nightmare.

The morning after. Ready for the Easter Bunny!

Nora had her chemo treatments, and (like a BOSS), she maintained her smile and her appetite, proving to any lingering doubters that she is, in fact, the toughest 5 month old on planet earth. A few of her favorite nurses stopped in to see her and brought her an Easter basket (amazing) and snuggled her for a few minutes before moving on to another patient's "Last Chemo Treatment" party, complete with noise makers and confetti. Yes, I am already waiting with bated breath for Nora's party. And as soon as I know the date-I will be sure to announce it.

I think the thing that is hardest for me about this whole new life is the lingering question of WHY? Why her and not me? Why now? Why this? Just. Plain. Why? I know I am not supposed to ask why.  It doesn’t matter anyway. This is the hand we were dealt. This is the fight she is faced with, and asking a question like why is not going to change any of it. But I can’t help but ask. If there is a lesson I am supposed to learn from this, why does it have to involve Nora in such a brutally physical way? I’m not sure I’ll ever understand, and I hope one day I can come to terms with all we have been dealt and stop asking why. I pray that Nora’s resiliency persists and she continues to inspire masses of people, some of which she will never even meet.  I pray that peace finds its way back into our lives, and we can look back on this journey as a stepping stone in a great, full, healthy life for both of our beautiful girls.