A Week of Goodness

Feed your faith and your fears will starve to death. That was a post today from a FB group I follow called Little Warriors. This may be a little difficult to read at first, but I promise I will finish with good stuff. I’ve been walking around for the past two days trying to get all the things done that need to be done before we hunker down for the next week or more at TCH. Tomorrow we head in all day for pre-op and then Wednesday is the BIG DAY! I have to take a deep breath as I write this… my nerves are building. While I’m nervous about Jake’s surgery that is expected to take anywhere from 8 – 12 hours, it’s the days following that I am anxious about most. Nothing prepares you for what you see when your child comes out of a long, complicated surgery. They are ghostly, all color is drained from them, their little eyes are purple and deep-set, their lips have no color and are raw and chapped, there is an oxygen mask, tubes and wires and machines everywhere, you’re afraid to touch and hold them for fear that you may hurt them. Jake will have will have a six inch insicion going across his little tummy – that’s huge for such a little bitty thing that is all of 33 pounds. His last surgery was almost 5 hours and seeing his fragile, unconscious, little body lying in recovery brought us to immediate tears. The aftermath is days of not eating, watching their little body get smaller, seeing them drugged and wornout. Then there is the actual day.. it’s hard to wrap our minds around the fact that we will sit in a room for hours upon hours while they have him open on a table trying to take out the very mass that started all of this. It won’t take his cancer away, there is still so much treatment ahead, but the place that it all began will be gone. For our medical friends/family, this is for you… the mass stems from his adrenal gland. All of it will go. It is close to the spine and encompasses the renal vein and part of the renal artery. This means our surgeon must break the mass apart and carefully dissect it from these veins. He feels confident about the surgery but did say that they will be watching that kidney over the next couple

of months as there will be trauma during surgery and the restriction of blood flow could cause it to fail. It won’t happen immediately, it is a slow process, if it happens. There will be special meaures such as specific drugs to coat those veins while he is working on them, and speeding up Jake’s heart rate during surgery in order to expand those viens so that blood flow to the kidney is increased. He will likely take a few spots from the liver to see if they are “active”. The scan showed the spots reduced but until we do the MIBG, we are unsure to how much of the cancer is truly being eaten by the chemo. A liver biopsy may give them a sense of how those areas are responding. Seems there is always something new but for now, we forge forward with high hopes and LOTS of prayers. We expect to spend 2-3 days in ICU so we may not be easy to reach, but we will try and update FB or the website when we can. In the meantime, we had few days of fun. We were able to spend some time with BFFs Eryn and Tracy with a playdate to the park & the dinosaur exhibit, where Jake found Big Foot (because “ya know Mom, Big Foot was alive with the dinosaurs”) – he’s a BIG FAN of the Finding Big Foot show! We visited 104 KRBE to meet with Roula and Ryan from the Morning Show. (Check out Yoda in the KRBE waiting room

wearing Jake’s Make Cancer Extinct bracelets!) Jake was able to make a very short visit to his preschool last week and see his friends – he hasn’t seen them since September so this was HUGE! We had a visit from an old HS friend, Todd, who gave Jake his Army Gimlet Crest (Jake put it next to his Wreath’s Across America pin on his fave red beanie – see above), we made it to Nikolas’ first soccer game (our grandson), and Lady Goo Goo Ga Ga came to play today. Jake adores her, and I do too! For now, I pack, Jake plays, Henry prepares, the kid’s ask lots of questions and we ask for your prayers once again. My dear friend and Faith & Fitness partner in crime, Shana, and I have this thing “100 PERCENT!” It’s about Keepin’ the Faith all the time! Just when anxiety started to creep in yesterday… along came her text saying, “I love you, 100% ALL IN!” My God wink for the day to just let go and let God handle it all. They say that God gives us angels here on earth in the form of friends… we are so blessed to have so many angels surrounding us, holding us up, lifting us in prayer. THANK YOU just doesn’t seem adequate. You all continue to move mountains for our family. Your calls for healing are being heard, prayers are being answered, our son is a miracle in the making… we just know it. We wait, and we pray, and we enlist you, Jake’s warriors, to take his surgery to the One who will be in that room Wednesday, guiding our surgeon’s hands. Our faith grows with each day, each procedure… and your faith that this will one day be behind us, builds us up, feeds us, starves out our fears. God continues to prove what he promises – a shield, a refuge, a comforter, a restorer of the soul. And as we sit Wednesday morning we will pray to… “Be strong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9 We’ll be singing… http://www.youtube.com/watch?v=XtwIT8JjddM 10,000 Reasons (Bless The Lord) by Matt Redmond