It was a pretty complicated decision to make regarding the injection version of Erwinia. We weighed the following: pain/ trauma, number of injections (each skin poke brings potential for infection), duration of post-administration observation, potential ammonia level increase (is higher with infusion method), additional hydration requirements (more hours hooked up to his "power tower"), and his overall reaction after one administration of both infusion and injection. When it's you, it's a much easier choice. When it's your child though... you agonize over the littlest of details. It doesn't help when the doctors and medical staff tell you things like "most kids handle _______ very well" or "he looks like he bounces back quickly". I mean, praise God that these sentiments are true, but still... when they're talking about YOUR CHILD who has never had to receive these kinds of drugs, or ANY drugs for that matter, you find it difficult to accept their words. I basically told Jake to make the final decision and he chose the injection route and promptly made plans to escort Dempsey to all of those appointments. God bless him!
This has been a week of discovering some limitations I have, acknowledging them, embracing them, and leaning into my amazing life partner. Jake has managed to pick up where I leave off with grace and never makes me feel guilty for my limits. Nope, the guilt I feel comes solely from within and there is no shortage of it. Keepin' it real. Where in the world does the notion that I need to be "everything" for Dempsey come from? I don't know if that's a mom thing, a human thing, or a character failing of mine. Regardless, it's there and I am constantly working around or through it.
Jake is the most amazing life partner! I could not have created a better one for me if I tried. God knew I would need Jake as a package for what our marriage would entail. I am so grateful the Lord wove our lives together. I personally think our life tapestry is beautiful. Elements of our marriage are being tested. We, as husband and wife, are having to navigate a gauntlet I would never wish on anyone. Thankfully we choose to lean into each other as we lean on God in order to come out of this victorious. It is my prayer that we are always glorifying God- even in the hardest times, even when we doubt. I pray that we are always salt and light to a world in desperate need of hope. I hope that my (our) transparency is encouraging to all who look upon our relationship. I will ALWAYS ask for more prayer over our marriage. It was before leukemia and it will remain after leukemia. It needs to remain a high priority and receive constant care and attention.
My amazing friend Monica took Sawyer for the whole day on Thursday. He accompanied her kids to Bounce U from 8:30-2 and then to Chess Camp (which is every Thursday) from 3:30-4:30. Sawyer and I met up with them in the Outback parking lot in Brea at 7:45 and she dropped Sawyer off at our house around 5:15. It was a great day for Sawyer and a nice break from him for Dempsey. Sometimes, you just need space from a person... or people... or your house... or your ________. Sawyer said he had such a fun time with friends and he sure did expend a LOT of energy. Hooray for fun opportunities and time with friends!
I do sense that Sawyer is having a hard time with having a little brother with cancer. So often Sawyer forgets Dempsey is so sick because he looks and acts so normal and strong. But, on days where our parent hearts are weak after Dempsey gets so many drugs pumped or injected into his little body, we ask Sawyer to cater to Dempsey a little bit more than normal. We don't spoil Dempsey rotten, despite wanting to, because we still need him to grow into a decent human being! We do ask that Dempsey get a little bit more of his choosing for enduring such crappy realities. Sawyer has acted more like a teenager this week. Yesterday morning he was playing wii AND listening, on headphones, to a Burns and Allen Old Time Radio Show. Is there anything more typical teen than shutting out the world in such a way? I remember listening to music while doing my homework. Sawyer has also taken to joking around so much that we just look at him and go "Enough." Please don't get me wrong, Sawyer and his worst day is exponentially more delightful than other kids on their best days! We love and appreciate our Sawyer so very, very much. He is an incredible human being! I'm just sharing that he is struggling with Dempsey's reality... our family's reality of cancer. It really does effect more than just the one plagued with it.
Eavesdropping: Sawyer was asking if Dempsey had an appointment today. When I said no, I heard Dempsey say, in a VERY high-pitched voice, "That's good, right Sawyer?!" He is just the sweetest little guy and Sawyer is the best big bro a kid could have... even on his worst day.
It blesses my heart (and our family) that there are still tangible gifts being gifted to us. Whether it be money, meals, or items off our Amazon Wish List... I am (we are) so appreciative!! I cannot describe the feeling of care that comes when I receive these gifts. To know that you are thinking of us and supporting us, still, is wonderfully overwhelming. Sometimes I fear that our support network is going to grow weary of carrying us through this valley and that makes me scared. I know God is ever-present with us but sometimes the need for human support is real. Someone to reach out and touch. Someone to say thank you to. Believe me, I say thank you to God all the time but when I say it to a human I see the response. I don't get to see God's response on his face... just imagine it.
I have started a website, not sharing the address yet because it's not complete, where I will share the holistic methods and products we are employing for Dempsey's body during this cancer battle. It will also incorporate this blog/ site so you will still see these posts. Plus, I will still share, from here, on social media for those that are on Facebook and Instagram.
THANK YOU SO VERY MUCH FOR STICKING WITH US!! We need you. Truly, we do. Dempsey has three years left of treatment and, so, we will need you for three more years and beyond, if you can hack it. July 2019 is our end date. Please keep Dempsey on your fridge (aka in your minds, hearts, prayers). His cancer journey does not end when the cancer does. There will be years of follow-up appointments and check-ins and I will, no doubt, spend the rest of my life with the fear (however small) of cancer returning to Dempsey's body. I have been wrecked and will never be the same again.
All for the glory of God. All of it is in God's hands and according to his time.
WAYS TO HELP/ SUPPORT
