I splashed cold water on my face and buried my face in the hospital grade paper towel. I hesitated to remove the stiff towel. Maybe if I wait long enough this nightmare will be over. None of this will have happened. I will remove the paper towel and look up to see my bathroom and my baby girl happy and healthy, kicking in her bouncy seat.
No luck. I looked up to see my tired reflection staring back at me in the sterile bathroom. We were still in the hospital. My Marjorie was still in her hospital crib hooked up to IVs and wires. I was still a mom whose child has cancer.
The past five days have been a blur, an emotional avalanche, a nightmare that won’t stop. But in the midst of this dark, I have also experienced the most amazing outpouring of prayers, love and support. It has all been absolutely overwhelming.
To see the ripple effect of prayer and love on social media is truly astounding. I have received this incredible reminder that in this world where so much is pain, there is also so much good in the human spirit. To witness people come together and rally behind us and our daughter is the most indescribable feeling.
No parent ever dreams their child will be diagnosed with cancer. After a 68-day stay in the NICU, I thought we were done with hospitals. Here we are once again at Wolfson. And to be honest, Wolfson Hospital is another shining light in this dark diagnosis. The nurses and doctors on the Pediatric Oncology floor have proven to be earth angels just like every other staff member here. And we’ve also been inundated with visits from our past nurses and doctors, making us feel like the most loved patient in the hospital.
Many of you have reached out offering connections to other hospitals, St. Jude in particular. I can’t thank you enough for the offers and help! We did look in to our options and decided to stay here because we are in excellent hands. Neuroblastoma is one of the most common pediatric cancers, which mean it is one of the most studied. We are a part of a worldwide study that follows a specific standardized chemo care for all patients with this specific type of Neuroblastoma. So we would be receiving the same treatment if we were at St. Jude, CHOP in Philadelphia, Boston Children’s or anywhere. Being close to our support system is half the battle so we are beyond thankful Wolfson gives us the best treatment in our backyard.
Marjorie began her chemo last night. After a day of celebrating #nobonefriday, things got real again when that chemo bag was hung on my baby’s IV pole. I began to cry as I laid eyes on the bags decorated with bright “Biohazard” stickers and other warning labels.
Why my baby? Why? It is the million dollar question that I know will never have an answer. In those first few hours after the diagnosis, I couldn’t help but be crippled by that question playing on repeat in my head. I would bang my fists into the chair screaming, “Why, God, Why?” But as we received more answers and put a treatment plan together, I find myself slowly coming to kind of accept it all, even though this is not a situation I can ever fully accept. I just can’t. Why my baby?
I don’t believe God does these things to me or Marjorie. I don’t believe God makes bad things happen. But I do believe He gives us the strength to overcome whatever the outcome of the situation might be. Someone reminded me Thursday morning that my girl will ‘catch a break’ and we will return to normal one day, something she said when we were in the NICU. I desperately needed that reminder because right now my mind is filled with medical jargon and IV drips. There is NOTHING normal about this and once again I felt as though I would never find normal again.
My mind is exhausted. My body feels weak, like my legs could crumble at any time. I collapsed on the couch today sobbing after a slew of doctors left. The constant questions of ‘has this or that changed’ and ‘by how much’ and other tiny details that matter so much seem to run together. I feel tremendous pressure to try and remember and notice everything, but it is impossible and exhausting.
Sweet Marjorie is finally resting after having a rough day. Her belly has filled with so much fluid, it literally looks as though it is going to burst. She had a rough night with just being very uncomfortable and today was much of the same. We’ve had a brigade of doctors come through our revolving door asking questions trying to determine the best solution to the rapidly growing fluid problem.
Late this afternoon she was given a round of Albumin followed by Lasix. It worked quickly and gave her a bit of relief. Two hours later she woke up alert and hungry! I cried tears of joy seeing my girl eat and then look around with her big blue eyes. We even Face Timed with her daddy and big brother and her legs started kicking away when she heard big brother talk to her. Melt.My.Heart.
The room is quiet now except for the pecking of my fingers on the keyboard and the nurse hanging Marjorie’s chemo bag. Round One, Day Two of ‘Mission: SMASH Cancer’ is officially on.
It is wild how life changes in the blink of an eye. One week ago tonight, I was trying to get a fussy baby girl to bed, thinking she was gassy or maybe constipated. No big deal, it should work itself out tomorrow. And tonight I find myself watching her receive a second dose of chemotherapy.
My daughter has cancer. And it F&@KING sucks. I am so angry. I wish it was me who had the cancer. I wish I could take it away from her. But I can’t. So I do my best to accept this extremely painful and crappy card that Marjorie was dealt and work to move forward and find the positive.
You all are my positive. My family, friends, followers and everyone in between. We may not know each other by name, but we carry the same love in our hearts. A love for Marjorie, for children, for the good in people. There may be a lot of dark in this world and right now there is so much dark in my life and its name begins with the letter ‘C’. But we are flushing out the C with light and love.
Keep it coming. We feel it…and send it all back to you.