Not over yet.

I no sooner hit publish on the last blog post than my phone rang with Children's Hospital spelled across the front.

I didn't hear the news we were hoping for. I didn't hear that the nightmare is over and life can finally start to make some kind of sense again. I heard the words, "it's a mixed bag."

Basically, from Nora's bone marrow aspiration, a pathologist looked at 4 different groups of her cells. 2 separate biopsies and 2 separate aspirates. The difference is solely in the size of the sample. The aspirates are just tiny swipes of marrow on a slide and the biopsies are larger pieces of the extracted marrow. Both biopsies were clear. One aspirate was clear. The other had a cluster of definitive neuroblastoma cells around the edge. Dr. Friehling told me it is rare that the cells were found in the aspirate, not the biopsy, but she also told me that is not better or worse, just unusual.

So, I cried. In a crowded campus hallway, I cried. I wondered how I would find the words to tell Adam and my mom. I wonder how different it is to hear these things from loved ones than from strangers. Is it easier?  Harder? The same agony?

It took me about 18 hours to see things differently. To focus in on the good. Yes, this sucks. It is a blow that hurts and to be honest, I wasn't expecting it. I had a strange feeling inside for weeks, but I kept thinking, "my God, she looks good. It HAS to be gone." But, there's the good. Right in front of my face. She looks and seems to feel like a picture of health. She is beautiful and vibrant and funny and my goodness, is she smart. She is a daredevil and a comedian. She loves Heidi fiercely and she eats like a death row inmate on their last day. She is one inch and one pound shy of the 50% in height and weight for her age. I would say there is MUCH to be thankful for.

So, we cross this bridge. What it means for Nora is 2 more rounds of chemotherapy. 2 drugs back-to-back everyday for 5 days in a row. One is cyclophosphamide (which she has had before in higher dosages) followed by thiotepa . She will have both of these for 5 days straight, then she will get 3 weeks off for injections and to recoup her numbers. Repeat the same drugs/dosages, then another 3 weeks off. Then, another bone marrow biopsy and MIBG scan. The tumor board thinks this is her best chance to get to 100% NED. So, we listen and we prepare to spend Nora's first birthday in 9B. The major silver lining to the new chemotherapy regimen is that she is able to get the chemo in 9B and then go home each day. Any added normalcy for Heidi is always a major plus, so that alone will make these 2 rounds much easier for all of us.

Nora Melita Misencik, on the day my heart began to beat solely for 2 little girls.

I feel about as far away from strong as humanly possible these days, but I do find strength in others- particularly my best friends. I am so grateful and blessed to have them and they have literally become my backbone and my sense of reasoning in what seems to be unreasonable circumstances. I am forever grateful for them always, but particularly the past few days, which have been harder than I would like to admit. God really does work in mysterious ways. I can prove that to be true because how on earth did He bring such remarkably different, beautiful, hilarious, kind and amazing women to walk this earth with me?


We start Monday. Please pray for little to no side effects and a happy girl ready for Shaler's Homecoming parade on Saturday! God is good. He has brought us here and He will see us through to the end. This I am sure.

Just to liven up this post, I am going to post the video to the song that rings in my head every single time we step into Children's Hospital for treatment or an appointment. Not just for my Nora, but for all of the kids I see pushing IV poles and the families hearing life-altering news. No one knows their strength until they have no choice but to be strong.

...and we wait.

I haven't felt like myself for 7 months. 220 days have passed since Nora was diagnosed, but none have felt as long and torturous as the past 5. The minutes creep by as I stare at my phone, waiting for the phone call from a complete stranger that will determine where we go from here. My heart hasn't really left my gut since February, but literally feeling it sink deeper and deeper is more unpleasant than I could have imagined.

  

I got a call on Monday that her MIBG and CT scans were both read. Dr Friehling said that both looked great overall. She said that there were no lights on her original tumor site and none detected in her abdomen. Her liver, however, still showed some activity. It is difficult to say that is definitively neuroblastoma or just physiological activity (rapid cell movement from the liver functioning normally). The CT scan does pick up vague bone activity and from the initial reading, there were no metastasized spots detected. So, we are not out of the woods. As Jen, our favorite nurse and friend said, "She is walking around the edge of the woods."

Nora's biopsy bandages

I guess I should be jumping up and down. Don't get me wrong, I am relieved in many ways, but it is so hard to celebrate with this very big uncertainty hanging over our heads. Bone marrow. It had to spread to her bone marrow. I hate myself for not figuring this out before it could get there. I have been literally terrified since February 26th, when Dr. Shaw delivered that news. I remember looking at him through deliriously tired eyes and tasting vomit as he said those words. 220 nights of restless sleep. I am so afraid. I keep pushing myself to see the good and to stay positive. I know there is good. There is always something good. But why does there always have to be something else too? It's not even always something bad, it's just something. Something taking away from the small joys of our everyday life. Everytime I look at my girls, there is just a hint of haze. Things just aren't as bright as they should be. Life is just a little less fun, and a little more real. I guess no matter how "used to" this new life you get, it is never OK.

LOVING the zoo aquarium

Big Sissy

So, we wait. In between school and dance and an occasional trip to the zoo or the grocery store, we wait. We pray. Every night with Heidi, in the shower, at my desk at work, in the car, watching Big Bang reruns, folding laundry... I pray constantly. I look at Nora and wonder how all of these things could ever have been wrong with her. I try to tell myself that she beat this. She is a BEAST. Cancer is so sorry that it ever chose her. Now, I just need to hear it out loud. I need confirmation. I need that phone call.

Just waiting for the anesthesia team...

You sure are, kiddo.

Even through all of this, she radiates a sense of calming and reassures me that she is happy and loving life. I need as many doses of that smile as I can get.

Please pray with us that Nora's bone marrow biopsy will be negative. Please pray that she is past the harsh treatments and procedures and we can try to pick up the pieces of this mess and figure out what normal is again. I am so afraid, but I know no matter what, she has got this.

The Bravest Little Souls

One of the silver linings to this journey has been some of the beautiful souls I have had the privilege of meeting. At the very top of that list is our little fighting friend, Basil's parents. We haven't seen much of each other, but I feel like we can relate to one another on a level that most people can't even begin to understand. And to be perfectly honest, that sucks. I wish I didn't know them, and I am sure they wish they didn't know us. That would inevitably mean that our precious babies weren't suffering. But, here we are. 

At the Zoo!

Laura, Basil's mom, advised me to look this short story up after I posted my last blog entry. Holy cow, if ever there was a more poignant piece of writing to describe our babies and the cross that they each bear for this world. Our babies suffer. We suffer. They teach us to be brave and to keep our faith in Him. They teach us to lean on love and support. They remind us that we are not alone. Not ever. They teach us to stay strong in our faith and in this fight. They smile through the pain and create new hope with every milestone they reach. 

Thank you, Laura, for blazing this trail for the moms of future fighters. For every ounce of suffering my Nora has seen, your Basil has seen more. For every night we have spent sleeping on a pull-out(ish) couch in the hospital with Nora, you and your husband have spent 10 with Basil. For every side effect of treatment our girl has endured, Basil has bravely fought through more. I physically ache for what you have been through, and I pray that you can, in turn, literally feel how much I admire you and the miles you have walked in those 9th floor hallways. Our family will absolutely always be here for you. We will pray for Basil every night of our lives. Stay strong in this fight, for Basil is especially brave.

 

The Bravest Little Soul

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you”. God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

 

Sleepy Heads

Every baby is a literal miracle. A breathing, crying, growing, loving, fighting, amazing miracle. I have been given 2 beautiful and perfect gifts that I cherish with all of my being. I wish, just as every mother wishes, that neither of my miracles has to suffer. Everyday I wish I could take this fight for myself. But that wasn't His plan...and maybe Nora had something to do with that.

Nora's MIBG, CT scan and bone marrow biopsy are scheduled for Friday, September 23rd. Please keep us in your prayers for clear scans and NO EVIDENCE OF DISEASE in her bone marrow. Once the scans and bone marrow results are read (and CLEAR!), the tumor review board will make a decision on surgery to remove any remaining tumor in her abdomen. While I am not looking forward in any way to surgery, with her elevated protein levels in her urine, it might be the best action for the future. We always appreciate any prayers you can spare for great results and educated, thoughtful decisions by Nora's team at Children's. Thank you warriors. We wouldn't be here without you.

Best Friends

A letter to my little fighter.

Sweet Nora Beans,

I expected many changes to my life when I nervously and excitedly read that positive symbol in the bathroom on February 5, 2015. I couldn't wait to tell your dad, but I was so afraid that I couldn't possibly love another human being the same amount and in the same way that I love your big sister, Heidi. She took up (what I thought was) my entire heart. Where would there be room? How could it ever be fair? How would there be time for you? How could you compare to her? How would you fit into our family? But then again, I didn't know you yet.

Your first official picture!

I knew there would be trying times and exhaustion. I made it through almost 28 full weeks of constant nausea and vomiting. I pricked my finger more than 100 times for you through gestational diabetes. I changed my diet for better and (in part) for always (thank you, Nora, for forcing me to give up Cherry Coke. I never thought that would be possible). A second C section, 3 months of breast feeding and 5000 gallons of spit up later, you were perfect. You slept better than your sister (awesome, though practically impossible NOT to conquer that one). You were the baby everyone dreams they will have. The one that would change even the most stubborn mind that they just *might* want to have a baby, but only if it were to be like you. You were that perfect. You didn't just fit right in. You were always meant to be here. That missing piece we didn't even know was missing until you got here.

I worried how Heidi would react to you. I worried she would be mad. I worried she would resent you and ignore you. I worried she would be annoyed at your crying and your demand for attention. I was so wrong. Heidi fell in love with you, and every piece of baggage that came with you. She kisses you and loves on you (too hard, usually). She prays for you and worries about you. When your cries wake her, she asks what is hurting you. I didn't know that 3 year olds were even capable of the kind of compassion and empathy that Heidi possesses for you, but she has it. She doesn't understand the details of your fight, but she is fighting with you. I am so proud of the big sister that I see in her everyday. I hope and pray that she never stops fighting for you.

The night before Heidi's first day of school

Until the day that I take my last breath, I will be sorry that this has happened to you. To us. I have never met anyone who made cancer so sorry it chose them like you did.You fought this fight and put everyone, including your mom, in their place. You made us question ourselves, our fears, our faith. You made us better people through your suffering. You brought us closer to God and closer to each other. You reminded us all of what is important. That wasn't your job. But you did it anyway.

During this waiting period (the longest 4 weeks of my entire life), I can't help but look back on the past 7 months. In some ways, the days flew by. In other ways, they crawled. Some have been the greatest moments of my (almost) 33 year life. Some have been the worst. You have changed my life for the great and you have given our family more in your short 11 months than I could have hoped to give them in 11 years. You are an inspiration, baby girl. There is no denying that.

Thank you, sweet Nora. Thank you for being a walking miracle. Thank you for inspiring masses of people, some of which you may never meet. Thank you for smiling through the pain and reminding us to smile back at you. Thank you for testing the strength of my faith. Because to be honest, I think we all could use a little test in that area a time or two. Our Lord is working miracles in you everyday. It radiates through you and it gives us all the strength to keep going, knowing that He is in control and you are in His care, as we all are.

I know you're not done changing the world, kiddo. You and your sister have such beautiful souls. I know, I truly know that the world is a better place because you are both in it. I can't wait to see what you do in this life. I can't imagine being more proud, but then again, you have surprised me before.

Oh, Nora.

She did it. She finished her 8th round of treatment 7 days ago. Nora has proven to be a force of nature and a God-given miracle, as she finished her 29th dose of chemotherapy like a BOSS. She makes me wonder how she can possibly be so strong? So full of life and love and continue to bring me joy. She has suffered tremendously in her short life so far, and yet, she still brings me out of my own darkness. But, even in the strength of her fight, some days and weeks are just harder than others.

Front Porch Pic

I have been pretty quiet about life after round 8 so far for a few reasons. It hasn't been easy. Nora, while still pleasant and a complete joy, has had lots of trouble sleeping. She can't seem to slow down. She is extremely tired, but she is restless. She just can't get comfortable and barely naps 15 minutes/day. It is truly and utterly exhausting. (And this is coming from the mom of Heidi, who slept no more than 4 hours at a time until 11 months of age). I have never felt this kind of full-body mental, physical and emotional exhaustion (well, not since late February, at least). Minutes feel like hours everyday, as we are all running on complete empty.

Finally, my own sign!

Wagon rides are more fun when your IV pole clips to the back!

Been waiting to read that "plan" for 6 months...

Nora also pulled off part of her broviac dressing on Sunday. It is a long and drawn out story, but the climax was definitely me, wearing a mask and sterilized gloves Sunday night, while changing her torn dressing on her bedroom floor- breaking open chlorhexidine swabs and nervously applying the new bandages, as she screamed. Not sure where I thought I was going on Sunday, but the only reason I know I had put on mascara was the black residue left on the mask from my sweat and tears. There are no words to describe my desire to keep Nora infection-free the next few weeks. Adam and I could literally be considered lunatics when it comes to the number of times her temperature has been checked the past 5 days. (My guess is that she has literally had the temporal thermometer to her head a minimum of 250 times since Sunday afternoon). I'm not even ashamed.

Playing with Logan & Garrett

Nora's new doctor mentioned during her clinic appointment that her urine analysis has still not come down to a normal number.
**Basically, her urine has been collected during each hospital stay since February. It is being checked for 2 marker numbers (that are driven by her tumor mass). HVA and VMA are the concerning levels. You and I would have normal levels in the 20's or 30's, give or take. In February, Nora's numbers were over 100 in each area. They immediately started to decline when treatment started, but they have not gotten below 50, even with the incredible shrinkage in her tumor size. Her new oncologist, Dr. Bukowinski, said it is unusual (never something you want to hear). He said final scan results will tell the team more information, but his concern at this point would be that Nora's tumor is a more mature type of mass. Maybe it is secreting more of these acids, even at such a compact size, because it is stronger than most neuroblastoma tumors. Ugh, my sweet baby girl. When will you catch a break?

Again, because the scans should provide more information, the team will make a decision about surgery once everything is reviewed. A surgeon will be included in the discussion, and as much as I have wanted that dirty thing out of there from the beginning, the thought of surgery is very scary. I know my girl is strong beyond her year s. I know she can do anything, but I am tired of watching her fight a fight that should never have been hers to begin with.

Leaving the hospital @ 3am Saturday morning

I am selfishly tired of the bi-weekly nurse visits and lab calls, the shots, the dressing changes, the bookshelf filled with syringes of saline and heparin, zofran, alcohol wipes, caps, gloves, masks, hypodermic needles, stat locks, tegaderms, and leftover equipment from her antibiotic drip. I want to look at board books and stuffed animals, and fingerprints on those shelves. I want to change diapers, not port dressings. I want to give her a bath in the tub and take her for a quick dip in pappy's pool just once before the leaves fall.

Playing nice.

As relieved as I am that we may very well have just survived her last EVER chemotherapy treatment, I am also a wreck inside. I am paranoid beyond words of another infection creeping up. I am terrified of her scan results and what they might mean. The days literally creep by at a painful speed. No one needs to tell me the old adage "there's no point in worrying." Trust me, I wish I could just jump into someone else's skin for the next 2-3 weeks and live life without the burden of worry. But that's not likely to happen. So, if you need me, I'll be the one taking my daughter's temperature in the living room. Then in her high chair. And then again on the changing table. Then in Heidi's room, while she is dodging me behind any toy she can find.

 I do trust in the Lord. I have faith in Him and in His timing. I know this is part of His plan. I just wish I understood it. I wish I could make some kind of sense of it all. As each day passes, I am reminded to hang tight to my faith and to the captain of this ship. He will see us all through to the end. He is love & He is life.

Movie nite with snacks!

 

Just a quick video of Miss Nora walking into her last treatment. Just like daddy said she would...