As we hedge into the New Year, we have much to be thankful for… our family was together for Christmas which we didn’t have last year so we were able to make memories, something not taken lightly, and the past two weeks have glimmered with joy for our children. Our family was blessed in ways we could have never imagined by some of the cutest, sweetest elves bearing Christmas gifts, Christmas Carolers with beautiful voices and friends with the most giving hearts. Next week marks the beginning of a New Year and we pray the beginning of a miracle at work. Jake will be infused with his T-cells on Tuesday, December 31st. This is really big… he will start the New Year with possibility and hope. As I sit here and write, it’s all hitting me, the significance of timing… God’s
words that can ever describe the monster that grips our child… it’s as if he’s just within our reach but we can’t get to him. Just when we have a few good days, we have a day like Thursday, where both arms and his port took pokes… THREE moments of pain, fear and tears. Hugs become tighter, cuddles become longer, I love you’s are not said in quick stride, they are relished and have a sting to them. I find myself trying to memorize his quirky mannerisms and laughter (it’s that fear tucked so deep that I don’t realize I’m doing it until I catch myself.) There are a LOT of hidden tears. But with all of these emotions, there is joy too. Jake and the kids don’t completely understand it all and THAT is a blessing all it’s own. While they have been through so much and deep down know what lurks, they play & giggle, and argue & pester, doing all the things kids do. They still have hearts of children and I know we are standing upright because so many are praying for all of us. There is NO WAY we could put one foot in front of the other on a daily basis if the ears of God were not ringing with your prayers for our strength. THANK YOU!!! As usual, we’ve spent a lot of time at TCH getting ready for the trial and getting all of Jake’s tests/scans completed. Here’s where we are…. his boney disease showed fairly stable (good news), but there were new spots in his liver and one in his lung (the disease has moved back to the soft tissue organs) and his bone marrow shows disease again (that had cleared out after the MIBG treatment in Ft Worth but it’s back). This doesn’t put us in a very good place but we know what we’re up against and we will keep on. Jake is in good spirits, he’s energetic and “healthy looking” and has the strength and fight to keep going. So we will! We’ve had some time this week to catch up and Kate & Emma had their first haircuts since they shaved their heads in August! This was thrilling as they’re finally edging out of that chia pet stage. They’ve been amazing young ladies showing such courage, as BALD was not an easy way to start their 6th grade year. Their little pixie cuts look adorable! We are so, so proud of them!!! And for some really exciting news… “Jake’s party” as we call it – his Stompin’ Out Cancer 5K and Family Fun Day is almost here and there are 539 official registrations! January 11th is going to be a rockin’ good time! That is beyond anything we hoped for and we can’t wait to see everyone out there! There will be walk-up registration but be early… we won’t have a lot of extra shirts and the shirts are
awesome!! Trinity Lutheran School’s Art and Media class designed them and they are the heart and soul of Jake’s personality! He’s 5, it’s a 5K, he loves dinos, he’ll NEGU, and it is HIS little handprint… what else could we ask for? Speaking of the
“party”… I also want to share B.I.G. Love with you. This foundation brings so much joy and relief to the families of TCH. They stock the “poke” toy closet on the 14th floor so that every time our kiddos have the trauma associated with needle pokes, (and that is EVERY visit for a cancer kid) there is a little something special to ease the tears away. They also hit the 9th floor on Wednesdays with their carts of toys, snacks and toiletries to help families that are inpatient and can’t leave to get some of the most basic grocery or comfort items they need… like contact solution/cases, Tylenol, Midol, snacks, nail clippers, deodorant, note cards, you name it, they’ll have it on their cart! And if they don’t, they offer a weekly Grocery List Program to write down needed items and they’ll go purchase $25 of whatever you need and bring it back. I can’t tell you what this means to those of us that can’t leave our children. They offer hugs, a shoulder, smiles and help! We spent an average of 21 days a month on the floor last year and their B.I.G. Love was just that! It’s these things that bring a little calm in the storm of living in a hospital for weeks or months. Squirrel… at one point the chemo had Jake’s taste buds all messed up and the only thing he could stomach was BBQ Pringles… a dear friend, Tim, brought some and when those were gone, B.I.G. Love saved the day! Another time, Jake had been throwing up all night long and I was trying to get upstairs to the laundry but couldn’t leave him. He was in his last shirt and some undies when they came rolling down the hall… low and behold, they had jammies on the cart. I still get teary over that day… they had no idea what was going on behind our closed doors but God did… and through them, He provided. Whenever Jake saw those carts coming, the biggest grin came with them. We will have an area at Jake’s “party” to help support B.I.G. Love. If you would consider bringing an item or two, we would be so grateful. I’ll post a list soon but just bring anything that you would want/need if hospitalized! Here is a link to visit their site… http://www.biglovecancercare.org/index.html Last thing…. Jakie’s best freind, Nathan, has come back NED! I can hardly write this through the tears as this is the BEST Christmas gift a family can EVER hope for and we are so happy! Please keep Jake covered in prayer Tuesday as it will be a hard day for him… but one filled with HOPE for us! Wishing you all a Merry CHRISTMAS and Happy & Blessed New Year! “But one thing I do: Forgetting what is behind me and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” Philippians 3:13-14
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