Amber’s Way continues on, with all fingers pointing towards the West to NYC as we get ready to embark on her next step in fighting this cancer. Amber has an early morning set up with MSK on Monday to first take an X-Ray of her port, then a Brain and Spinal MRI. Then on Tuesday, she has her first infusion of the drug pembrolizumab. We are not sure of the time yet as we have to wait until Monday afternoon for MSK to give us a call when they have a bed available for her on Tuesday. Initially I was very upset when finding out that we have to go back into NYC for not just one day, but two. Still trying to get the dampness and exhaustion from Tuesday’s trip out of my bones. However, for Amber’s sake, we are trying to make the best out of this situation and decided (partly for our own sanity and energy) to spend a couple nights in a hotel (thank goodness for Matt’s hotel points!) and try to see some sights in our down-time. Of course I’m still freaking out a bit because of her missing school, and us not being home on school nights with after school activities with the other kiddos. Thank God for grandparents though!
Matt and I pray that we are going the correct way with all of this. We pray that God’s plan is this one, and that he is gently nudging us towards where we are supposed to be going. Amber’s Way is God’s Way and we pray for Big Hope in the Big Apple.
Matt and I have often written our posts in detail about our Hope and Faith, and other positive things we try to draw from all of this. But we also feel immense sadness. We want to share some of that sadness, in very raw truthful detail below. We know that many are going through this with us, or experiencing this (or something similar) in your own lives and families, and can empathize with the same deep sadness. This is the emotional highs and lows, spiritually and physically, of an incurable disease that a loved one is battling.
I know Matt posted a few days ago about our feelings, but I can’t reiterate it enough. Sometimes, the sadness is all-consuming. It’s been very emotional and trying on Matt and me. We honestly struggle every day. It hurts us so deep for our youngest daughter to have to go through something like this . . . for any child to have to go through something like this. For Amber though, she is the coolest of cool. This spunky girl is so laid back and nonchalant about everything it makes me wonder if she honestly understands the severity of what is going on in that little noggin of hers. And truth be told, yes — yes she does understand it, almost completely, at a six-year old’s level. When we ask her, she tells us she knows she has cancer, and that she has a tumor regrowing inside her brain. She tells us how we are going to be making lots of trips to New York to go get medicine to (hopefully) make the tumor go away. She ‘gets it’ all too well with a mature understanding that is quite remarkable for a (just about) 7 year old. She gets it all, almost.
One thing that I don’t think she quite grasps OR RATHER, perhaps I am too scared to even ask her, is if she knows that her cancer is deadly. Ugh, even just writing that word makes my eyes swell with tears. We’ve talked about death in our house at times, especially when loved ones pass away, which unfortunately for us, is all too recent with the passing of my cousin this past December and the passing of Matt’s younger brother two years ago. That was tough on the older kids especially, but also understandable for them in the grand scheme of things; there’s life, and then there’s death. But to have to talk and speak freely about the fact that, according to the research and statistics, Amber is probably going to
. . . (not survive). How do we do that? We’ve talked about it with the older girls (which I’m not sure they even get the magnitude of (yet)) but how does one have THAT conversation with the sick child that is so innocent and young in all of this? How? A beautiful little girl who is not so little anymore, growing up before our eyes, even with this behind-the-scenes horribleness growing inside of her. Amber’s at a point in her life now where the years are more meaningful because they are the youthful years that will stand out and will be remembered. Great, wonderful, and fun moments and experiences of her life that she will hold in her memory and heart for years to come. But How? How to tell her that she’s probably not going to make it past a few more years? Or that she’ll probably never experience high school or college? How? How do we tell her that she’s probably not going to fall in love, and get married, and have her own babies to take care of and love? How do we tell her this? . . . How?
I’m not actually looking for anyone to give me answers, because I know when the time comes, Matt and I will figure out what to do. Really, I’m just venting. I’m stomping my feet, screaming loudly, and beating my fists against my sides having a grown-up tantrum about why life is so unfair.
Cancer and Death. That should NEVER EVER have to come up in a conversation with a beautiful innocent child. The thing that hurts the most is simply knowing all of the good, the beauty, the glory of what Life is — especially with these upcoming milestone years — that she is probably never going to get to experience any of it. She’s being short-changed a potentially amazing life, and that sucks, big time.