Survivors Guilt

Appropriate medical terminology aside, Nora is a survivor. I am not allowed to tell you that she is "in remission" and I can't say (no matter how badly I want to) that she is "cancer free," but what I can tell you is that I am thankful. Nope, I take that back. I am thank FULL. Every fiber in my being is full of thanks and praise to my God that she is still here THRIVING.

Daddy Daughter Dance

I need to say that out loud and in writing, because the next part of what I need to say may not be what anyone expects to hear...

Survivor's Guilt is a real thing. 

For every ounce of thankful and grateful, I have some sadness also. In a world where go fund me pages, facebook groups (including Nora vs. Neuroblastoma), and viral images are at my fingertips, I find it increasingly hard to un-know unspeakable tragedy. I cannot un-see the images of babies and children who did not receive the wonderful news our family did on November 23, 2016. I cannot un-hear the news of  a child's passing or a devastating diagnosis. I cannot stop imagining the hurt and grief of bereaved parents. This side of treatment isn't automatically an easy life.

First Haircut

There is so much uncertainty. So many statistics. So many questions unanswered.

In my experience, there are 2 types of survivor's guilt. There is the obvious:
Why couldn't it have been me instead of her?

I think every single parent of a child with serious illness asks this at least once. You would take their pain and suffering in an instant to heal them. You so desperately wish it was you in the hospital bed, throwing up, getting poked with needles, going into tunnels of radiation. I know every parent would take it for themselves in a heart beat.

 

But the other side of survivor's guilt is possibly the one that might sound strange, and I fear it may make me sound ungrateful, which is NOT the case.

I find myself wondering sometimes...why did Nora make it? Why did her tumor shrink 97% in 3 months, and some kids go through the same treatments and hear their cancer spread even further? Why are some parents planning funerals, while I get to watch dance recitals and paint rocks on the back porch?

 

It's hard to describe feeling simultaneously grateful, scared, sad, and guilty all at the same time. They are each incredibly complex emotions, and some days it is overwhelming to feel them in full force all at once.

No one likes to read about a sick child. No one smiles at a child's funeral. But for me, when I read those posts or stories, when I hear about those brave and beautiful children that didn't make it-those emotions rush into my body in shock waves. Sometimes I can literally FEEL a piece of me die inside. I desperately try to redirect my feelings to gratitude. I search for a way to turn my empathy into something constructive, something helpful, something meaningful. It pushes me to do something real-something to honor that child and that family. Sometimes, it pushes me to make a donation somewhere, to take my girls somewhere and make memories, to plan a random act of kindness. It gives me the drive to create good out of a feeling of true hopelessness.

Delivering chapstick on Diagnosis Anniversary #3

 

 

Survivor's guilt is a strange feeling. It is complex and truly hard to describe. I imagine there are other parents out there who have felt something similar. Who feel a bit obligated to make the most of every single day with their child(ren). To look at life through a different lens than most parents. It's the kind of feeling I don't think you can understand unless your child has faced death head on. Being forced to imagine your life without one of your children is a completely humbling and sobering experience. It changes absolutely everything. Forever.

So, to all the parents out there who know this feeling in some capacity-I know it's not an easy road to travel. It can be exhausting and overwhelming. But, I also know that you are grateful beyond words that you are experiencing it. Because the alternative is unbearable. The alternative is unimaginable pain and grief that we will do anything to avoid. The alternative is your worst nightmare coming true.

I know that the plan in place for Nora's life is greater than any I could have imagined for her. I truly believe she will change the world, and some small ways, she already has. I see and feel the way my girls connect with people of all ages, and it makes me realize the magnitude of being their mother. God certainly knew what He was doing with those two, and most days, I marvel at the fact that He chose me to be their mom. My grateful heart beats for them.

 

I gladly bear these complex emotions. I don't self loathe. I know my blessings are endless and my life is full. But sometimes, it makes sense to tell others what this life is like. Maybe to help them understand. Maybe to get it off my chest. Maybe to try to help another mom or dad in some way feel less alone in their emotional journey through pediatric cancer. Maybe it will give even more purpose to Nora's fight. (I am always looking for that!)

 

 

The song that was written for my Nora Beans...

 

International Childhood Cancer Day is a thing.

I can't believe there is a day dedicated to this, and sometimes I can't wrap my head around the fact that it will always be such a huge part of my life. I know most people that read this blog have followed Nora's story closely. Some we see monthly, weekly or more. Some we have never met, but I can literally FEEL their support and love for Nora in my bone marrow. There is no doubt in my mind that Nora has already made this world a better place just by being her brave little self, but I so often wish she could have made her impact in a different way. Why childhood cancer? Why stage 4? Why did her symptoms only come to light a week before her diagnosis? How could it have come to that?

Childhood cancer is a disgusting thing, but it does have a way of forcing you to get your priorities straight. It forces you out of wallowing because you have a child to care for constantly, but in a hyper-aware way that her big sister didn't quite require. While it is expected that your mind will wander, you will be afraid, YOU WILL UGLY CRY-sometimes in public, you will find so many parts of the journey unbearable. But you will bear them. You might die inside behind the curtain when she finally falls asleep. You might have gone entire nights staring at the reflection of her glowing monitors in the window. You might have stared out the floor to ceiling windows in the corner of the common area in the wing, memorizing the buildings in Bloomfield and wondering where the cars are going across the bridge at this ungodly hour. The beeping of her pumps might be a sense of comfort after a few rounds, which scares you and silently steals pieces of your hope away simultaneously. How could you be getting used to this life? Will this be her life forever? You might be able to walk the halls of 9B blindfolded-you might even be able to do it while pushing a 7 month old in a little plastic car or pulling her in a wagon filled with pillows.

Said little plastic car

Said wagon filled with pillows

I literally pray every night that not a single other mother will ever be faced with this same fight, but if you are, childhood cancer will shock you to your core. It will fundamentally change the person you are in almost every single way. It will do things to you that you couldn't possibly imagine, so don't even bother trying. If you would have told me shortly after Nora's diagnosis that the hospital would soon be a place of peace and comfort to me, I would have punched you literally in the throat. But once we got past round 5, I looked forward to each round. Not the actual chemotherapy bags being hung, not the nightly neupogen injections, not the risk of illness, not the side effects, not being separated from my Heidi girl, but the fact that each round meant we were one step closer to putting this madness in the rear view mirror. One step closer to NED. One step closer to hair and not flushing a port, to less medicine, no dressing changes (with that mean old nurse Jen putting on her mask of terror 😉 )** One step closer to the healthy life my girl had so rightfully EARNED. Signing the CONSENT TO TREAT was always done with shaky hands and a racing heart, but I knew it was her only chance and it was my responsibility to make the hard decisions. I mean, that's what all parents sign up for, most just don't have to make these particular ones. And in the moments that I dotted the i's  in our last name on those papers, I was simultaneously scared and grateful. Some moms no longer had the chance to sign. Some moms weren't as lucky as I was.

And it effects our whole family wholeheartedly. 

Heidi continues to have her own journey alongside Nora's. From the moment Nora came into this world (well, actually, I would say 1 month into Nora's life, if I am being totally honest 😂), Heidi was obsessed. Helpful, doting, gentle in ways I had never seen in her before. She has always had a 6th sense when it comes to her little sister. She understands Nora's needs sometimes before any of us, including Miss Beans herself. It is remarkable and beautiful, like nothing I have ever seen in this world. When Nora was diagnosed, Heidi was 3. She was too little to understand. To be honest again, Adam and I didn't even understand at first. I wasn't sure how to explain things. For every ounce of sweet, Heidi had also carried with her an ounce of scared. New foods, the doctor, swimming, her power wheel car...she was scared of things most little kids enjoyed. How could I explain this without her being scared or worried?

Nora's best friend forever.

When I think back about how much I worried about telling her, I am ashamed of myself. I can't believe how much I underestimated my girl. We treated her sleepovers at Grandma and Pappy's like they were a special treat for her. We slowly explained our hospital stays and that Nora was "sick" and the hospital was making her better. We didn't tell her about Nora's disease specifically, but she was smarter than I gave her credit for. While I wanted her to be mindful and careful around Nora's port, I didn't want her to be scared of it. Heidi became my special helper when it was time to flush it. I got the saline syringes ready and she pushed it through without the hesitation I was so certain that she would have. She blew me away. But it took me until after Nora's 10th round, her port gone, our lives SOMEWHAT back to normal to realize how observant she was this entire time.

Nora's last hour of chemotherapy

We had a meeting with her preschool teacher in March. Like every kid in her class, it was an assessment of her progress-mostly social awareness, but recognizing letters, writing her name, all things I was expecting to discuss. Then her teacher hit us with the bombshell we weren't expecting. "How is Nora?" she asked. Adam and I looked at each other, bewildered. Did she mean that casually or did she know? We strategically had not told Heidi's school about Nora's journey for one main reason. That place was for Heidi. We didn't want anyone, especially Nora, stealing her spotlight there. That was her sanctuary and the place where Nora and illness were not discussed regularly. It was her choice to tell them about Nora. We sat there, astonished, hearing that Heidi had asked her class to pray for Nora before snack on a day when Nora was actively receiving her 9th round of chemotherapy at home that day. She updated them near the end of Nora's 10th round that "Nora's chemo" was making her better. She told them about the "magic princess potion" aka saline that she put through Nora's port...using all the right terms. She understood completely and I can't believe I ever doubted that she would be able to handle it. Childhood cancer is tragic, but forces you to see the world, and your children, differently.

The beginning of the end of treatment.

I'm not exaggerating (or bragging) when I tell you that every single day, I celebrate my girls. I literally soak in their sweetness -even their sourness- in a way that I am certain I would have taken for granted if Nora's life would have been different. I cherish their relationship with each other in ways I would have undoubtedly overlooked before. They are INCREDIBLE children. I know every parent says things like that, and I can fully admit it has very little to do with Adam or myself, they were born to be INCREDIBLE. Sure, they are smart and beautiful (now I'm bragging), but what I can't get over is their ability to CONNECT with others. Their personalities, although VASTLY different from each other, are rooted in connection. They are on another level then others in their ages groups (in my amateur and incredibly biased opinion), and I believe it is God adding even more purpose to this never-ending childhood cancer journey.

 Some pictures of Nora's fight in chronological order.

30 minutes after diagnosis of neuroblastoma.

2 days after diagnosis. Day of port installation.

First round of chemotherapy.

First night back at home after diagnosis.

Round 2. Fighting with a smile.

Days before we found out the chemotherapy treatments shrunk her tumor more than 97%

Meeting Uncle David!

First ride in the cart...after mom sterilized the crap out of it!

Blood infection=hospital for 6 days and delayed treatment

Round 8.

Round 8 cont.

Ready for scans after round 8

Scans=bone marrow biopsies. OUCH!

Literally getting chemo on her 1st birthday.

For real. Round 10. BOOM.

I personally think clinic chemo was harder than inpatient. Esp. for a 12 month old.

Day of scans after round 10.

What we face in recovery.

The day we got CLEAR BONE MARROW results.

The night before getting her broviac port taken out.

First oncology appointment with NO CHEMO SCHEDULED!!

Nora last weekend making a masterpiece.

 Today isn't really a day worth celebrating in my opinion, but it is important to recognize how many families have their own story to tell. How many families across the world have heard the words "your child has cancer." How many families would give everything to watch their child grow up, the way I hope and pray I will be so blessed to do. International Childhood Cancer Day isn't something I wish I knew anything about, but since I do, I won't ignore it. We didn't take our fight laying down, and we won't pretend we did either.




** If you are reading this blog for the first time, please note that nurse Jen was EVERYTHING to us in Nora's journey. EVERYTHING, and our ultimate silver lining. Nurse Liz was also pretty rad.