Empty

That is how I feel. It seems as if every last bit of life has drained out of me over the past two weeks. While we were in the hospital I was running on autopilot fueled by adrenaline and a steady stream of Starbucks. Since we have been home though, I have crashed. I started battling a bad sinus infection/cough on about day 3 of the hospital – it is a miracle that Gus, whose immune system we were purposely wiping out, and who was sleeping in my face, hasn’t caught anything yet. He sneezed several times yesterday and it made me nervous. I slept most of the weekend. I can’t even keep up with what day it is. I am constantly battling nausea. So today you are getting the raw, unfiltered Lesley. No Pollyanna today.

Well, maybe just a little. We have been overwhelmed with love in the form of cards and surprises from Gus’s wishlist. I know there are hordes of people praying for us – and I am so thankful because I don’t even feel like I have the energy to pray right now – I need you all to stand in the gap for me because I barely have enough to do the basic minimum. We ran back to Augusta on Tuesday to check Gus’s levels because from how he was trending in the hospital, we figured he would need some platelets – but he didn’t! He has been feeling great. He has gained 5 lbs (thanks to the steroids). I have lost 10. Tomorrow will be our first in clinic chemo. It isn’t a new medicine so we don’t expect any reactions. We did get good news about the genetics of his type of ALL (can’t remember if I said this previously), but it puts him in the favorable category – meaning that this particular mutation helps the chemo to do a better job of killing the cancer. Again though, the true test is the MRD number at the end of the month. As usual, the kid is amazing us all with his attitude – I can explain that he doesn’t really need a sandwich right after a huge breakfast and that the medicine is playing tricks on his taste buds and he gets it (he will sneak a string cheese on me when I’m not looking though). He has asked questions, knows what to expect, and is handling it all with a smile on his face. His mom however, is struggling.

I don’t get it. I will never get it. I remember lying face down in my bedroom floor when my breast cancer was diagnosed crying and pleading with God – why would He give me this child I had wanted for so long, after a very hard loss of a child, just to take me away from him. Was I ever going to hear his voice? I thought that was the bottom – but I have found it is much deeper. When I got AML and had to spend so much time away from him, I had an unspeakable peace – I just did what I had to so I could get back home to him. The bad infection and Wally year….we just passed that point and I was starting to feel the clouds lifting. I thought, now I can take a breath and my body can heal. But no. In the middle of all of that I have lost my dad – and been in a 3 year legal battle with my stepbrother about my dad’s estate – being taken advantage of by multiple people while on your deathbed is not a good feeling at all. But on principle, I had to fight it – because it is not okay to treat people like that, and I needed closure from a business/legal perspective too that is too much info to share here. We literally just got that settled a week or two before Gus’s diagnosis. I have also had a lot of struggles with my oldest son, but I will keep those details private for his sake. All of that to say I just feel like I keep getting kicked over and over every time I start to pull myself up. And this time it is really hard to keep a smile on my face. This is my baby. Getting his diagnosis wasn’t a scary unknown – it was worse because I KNEW. I knew exactly what he was about to go through and the length of time it was going to take. I saw it all in a flash as soon as they told me his blast count was high. I was gutted. There was relief when we knew it was ALL and not AML, but I still don’t want him to have to go through this. I would do it a hundred more times if I could so he didn’t have to. I’m grieving. I’m grieving the childhood I wanted for him – he has had a sick mom the entire time. And now he has to do the same. We had been planning to play baseball now that the older boys are all driving. That is on hold for a while. I have to be hypervigilant about germs and fevers and sickness with him – and that is not the kind of mom I am – I am a BOY MOM – I want them outside getting dirty, getting scrapes, building immunity. It’s all different now. And I have to be his advocate. I had no idea how much harder it is to advocate for someone else – I have always advocated for myself fine. This is different. I saw the medicines and the pain turn my child into something else – while it may be normal for them to see these reactions I knew it wasn’t right for him. I wanted to be angry and yell and scream but knew that wasn’t right so I had to keep my cool. That was exhausting.

Because of my volunteer work with LLS I knew a couple of families whose kids had been through leukemia already. One of them is just a bit older than Gus. She came to the hospital twice to play with him and that was the best. Having another mom is so helpful. This is why I am so passionate about peer support in oncology (and hope one day my life calms down enough so I can implement more of it). She pointed me in the direction of where to get port shirts, and other things for kids with cancer. We’ve started brainstorming Make-A-Wishes…… But raw honesty…..I want a make a wish. No person should have to endure this much. (yes, Christ endured it all and then some for me, but I told ya’ll, God and I are having tough conversations right now – I’m still in “I believe, help my unbelief” mode). I want someone to show up with a big publishers’ clearinghouse check or powerball mega millions winning numbers and say “buy all the fabric you want, weekly massages, build a house, and here’s a Shelby Mustang and a Vintage Bronco to boot. And who are your favorite singers, you can go have lunch with them” But no. One trial barely ends and another begins. I feel deserted. I feel like I have been faithful over and over and continue to be punished for what I have no idea. One big sucker punch after another. You know in MMA when they can’t get kicked with all four limbs down, but it happens anyway – yeah, like that. Now, I have been a Christian as long as I can remember. I interned with a college ministry – I have good biblical knowledge – I know that’s not how God works – BUT THIS IS HOW I FEEL and for whatever reason, I felt like you all needed to hear that side of it too. [and just to add insult to injury, literally as I was typing that last sentence my dog threw up ON MY BED – SERIOUSLY?!]

Please keep us in your prayers. Gus of course is top priority – we pray that the chemo does it’s job and we have ZERO MRD at the end of the month. But please pray for his mamma too – because she is empty. I feel I have nothing else to give and I want to be the best advocate I can for him. I want to be his cheerleader. I want to enjoy snuggles and read all the books – but all I feel like doing right now is taking anti nausea meds and curling up in a ball.

That’s all I have for now. I guess I’ll go clean up the dog puke.