We came home without TPN!!! Without a pump! Without a line to flush! Without tubes to be cautious of! It is THE BEST feeling! Jake is so happy!!!!! We haven’t seen him this happy since we started all of this – a long time for a little boy. He’s been hooked to tubes for a good month, so this is freedom. Round 2 continues to go well, and so far, besides a little nausea this morning, we are keeping the nausea at bay with some good meds. And more praises… he’s taking them (the meds)!! No fighting it. That is a BIG deal. He’s eating, he’s drinking, he’s walking ALL over the house. When he was hooked up to the pump he had very limited accessibility since we had to pick everything up, be careful of stepping on tubing, or heaven help us pull it from his chest. Now he can get up and go anytime, anyplace… he can pee by himself! Although, mamma bear tends to intrude to be sure that the hands are washed. (Germs, ya know). Bacteria is our #1 enemy. AND he’s had a BATH!!!!! I’m sure the angels were singing! He’s clean… really clean. I’m giddy, I’m so happy. To see a kid who was truly at death’s door just two weeks ago bounce back like this is miraculous. They say we will yo-yo, but it’s hard to think of that right now. God is good! Today was good! We had the day to just be home and hang. Mrs. Jeanne came to play (thank you Angel Jeanne!). Leave it to Jake to teach Jeanne farting dinosaur games but his belly laughs are priceless. It allowed me to get things unpacked and begin re-packing. We’ve been informed to keep a hospital bag ready at all times – when fever strikes we have to be ready to flee at a moment’s notice. So his jammies, his special hospital sheets and blankies all got washed and put back. (I’m sure I’ll appreciate this when I’m packing for our next chemo). His counts are already dropping and he’s now neutrapenic. It gets there quick. He hasn’t bottomed out yet but we’ll find out tomorrow where he sits. As of Monday his ANC was 1500, Tuesday it was 800, not sure where he is today. We go back to TCH tomorrow for labs and a nasty shot of Nulasta. It helps the cells recover but also brings on really bad bone pain and flu symptoms. We’re hoping for a 1/2 day in the med center, but numbers are the name of the game. Low ANC is OK but low platelets and hemoglobin mean transfusions and that puts us there for at least 8-10 hours. We’ll be ready either way. At the moment it looks as though we are back for Round 3 around Nov 30th. And crazy as it sounds, the Transplant Division has been in touch. Our docs said intense, aggressive, and fast paced would be the course of treatment… they weren’t kidding. We’ll begin those discussions very soon. But for now, we will enjoy our good days, rest, prepare for a holiday of thankfulness, and pray that the Nulasta won’t take him down-n-out too hard or too long!
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