Seems like every time I turn around someone is asking me for an update on how Natalie is, how treatment is going or how Mike and I are holding up. I have sat down many times to get out how I feel in writing but it just hasn't come. None of the words seem to do justice to whatever I'm trying to say. It has occurred to me that the words probably don't exist at all. Maybe its good that they don't. I am now realizing how much meaning has been lost in words like agony or joy. Words I have used before, but never truly understood...
Its been two months since we found out Natalie has cancer. Although, we got the phone call from her Doctor a few days before who said it was likely to be cancer...
I remember getting the phone call, Not so much exactly what was said, as the emotions I felt.
Sitting on the floor of our closet.
Phone muted while the Dr. explained some of the information she was given.
Letting out the ugliest, weakest whimper thinking I might die right there from pain.
I was jotting down key words to google later.
Her Pediatrician is so positive and loving that it was hard to believe we were discussing what we were...
When Mike came in the room after the call was over he was holding Natalie.
"What did she say?"
I just lost it.
"Cancer. She thinks it may be cancer, Mike. I don't know what to do"
Usually when I'm falling apart Mike says everything will be okay and I always believe it. But this time he said nothing. Our whole world was falling apart. Surely this is the worst day of our lives.
A few weeks passed and we adjusted pretty well to being at St Jude. Originally we were told that her treatment would be around 6 months likely, but once her results all came back from biopsies and scans and bone marrow samples, the cancer had spread and we would be looking at over a year, minimum. because of the spreading Natalies chances of survival were pushed from 90% down to 40%. Suddenly we have a new worst day of our lives...
Since starting her treatment Natalie has struggled with several side effects of the chemotherapy. Along with losing all but 5% of her hair, she has vocal paralysis which makes her unable to drink and eat soft foods. Its been crazy. Mike and I have learned so much we never wanted to know since coming here. We can change a central line dressing in just a few minutes. flush lines. give meds. hook her up to fluids & give daily shots to counter the drop in her immune system. In less than 2 months her bed time routine has gone from 10 minutes to almost 2 hours...
But its not all bad.
I feel like I'm expected to cry all the time or to say that these 2 months have been nothing but pain and suffering and our lives are horrible. But, cancer has not taken anything from us. In the last 2 months we have spent more time as a family than we ever have. We have cried from joy as much as we have pain. We have appreciated one another in a way I didn't think was possible under these human conditions. We have enjoyed the sunshine at the park & have gone to the zoo several times. We recognize that everyday could be the last day & fully take advantage of that time as a family.
It may sound crazy but I can FEEL the prayers. Like a wave of peace when I need it. God is surely working on something in our lives.
The support has been overwhelming. Natalie truly is a kid that everyone falls in love with. Nurses have taken their breaks in our room just to be near her. She just gives off a joy that can only be from God himself. It certainly didn't come from me...
Financially we have been very blessed, and haven't seen any hardship from this journey yet.
This post may be a little... random in places. I cant apologize for that because its just a reflection of how my life and thoughts have been. I do get angry and have to remind myself that cancer is not Gods fault. I do have moments of weakness when I just cry and cry, usually for the weirdest reasons... But Natalie is strong. She makes me strong.
The cancer is shrinking. The Oncologist mentioned that it was shrinking at an "above average rate". It doesn't surprise me. All things work for the good of those who believe in Him.
^ The left is before Chemo and the right is after 6 weeks.
^Natalie being so patient while a nurse accesses her
central line for routine labs.
^Natalie handling her (temporary) NGtube like its nothing.
Champ right there!!