This has been a roller coaster of a week for sure. To start off, it was Jake’s week of scans so that makes for lots of anxiety for all of us, lots of running all over the hospital from appointment to appointment, lots of pokes, waiting, and fear, and some tears. In the middle of it all Jake was moved back up in the trial, which is GREAT NEWS. But even that has roller coaster’d this week and already changed. He was to be infused next Thursday but we are now tentatively set for Dec 31st. We go up, we go down. It’s of no fault of anyone, just some FDA/trail findings that have to be reported and approved before the next child (Jake) can be infused (and it’s the holidays so things go slower). Jake’s bone marrow biopsy was yesterday and he’s sore today. They had a hard time getting to one of his sites so he’s moving a little slower than he usually does afterward. We’ll have those results back next week. His MIBG scan came back with a few sites a little darker but no new disease, it reported “stable disease”. Thank God! But his CT came back with a blow… there are new spots in the soft tissue. The liver lesions are back and there is a spot in the lung. The two liver spots are pretty good size, the one in the lung is tiny – they said it could be a virus but he hasn’t been sick and with the two lesions showing in the liver, we all have a gut feeling that it isn’t viral. Talks have become more serious and the volume has lowered while we sit in discussions so not to alert Jake of it all. He’s bouncing around looking so healthy… it’s just all so unbelievable. The phrase “poor prognosis” is coming up more and more, and the word “cure” much less, so we tell him what he needs to know and we protect his little ears from too much information. Our Handsome keeps on because he doesn’t know otherwise. Henry and I have been highly emotional and while we should be relishing this time, there is such desperation and sadness… fear really. I find myself spending endless hours researching, trading sleep for information, and diving deeper and deeper into the NB world… Henry too. I keep thinking of so many of our hospital family that would do anything to be where we are right now and my heart hurts because they will be one less this year as they gather for Christmas. We have Jake’s toddler bed in our room, he’s been sleeping there since he was diagnosed. When he’s sick from all the treatments, it’s made getting to him so much easier. Early this morning I could hear him breathing so I scooped him up and put him in bed with us. He didn’t even wince, just nestled in and slept on. He’s such a cuddle bug and this momma needed to hold her baby. So, I’ll close asking for your prayers…….. for joy in our household, that Jake’s bone marrow remain clean, for all of our kids battling, for our cancer family that have had such loss this year, and for God’s blessing on this trial. We need a miracle! Specifically, I’d like to name some friends so that you too can pray boldy for them… Grant, Taylor, Nolan, Pearl, Timothy, Charlie, Caleb, Bryce, Wyatt, Amani, Nathan M, Nathan L, Carson, Patrick, Hunter and so, so many others (those I didn’t list, forgive me). Please pray for their healing and protection, for pain free days, for joy and courage, and for strength and guidance for their families as they care for their children and make decisions that only God can help with. We pray also for all of you, for you have blessed our family beyond measure. All our love and Christmas Blessings to you and your families! “He will be great and will be called the Son of the Most High. The LORD God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end.” Luke 1:32-33 Wishing you a little “quiet” so that you may listen and reflect on the greatest gift of all…. http://www.youtube.com/watch?v=EosUH0orVUg “Here with Us” by Joy Williams
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