First… our day was long, but fine. Not because of anything worrisome but because TCH is renovating one of their pharmacies and things are a mess. OR at least they were today! What should have been an in-and-out day with labs and a shot, kept us there for 5 hours, plus drive time in and out of town (made for a 7 hour day for Jake). They somehow messed up his Nulasta shot and couldn’t seem to get it up to the 14 Floor for the life of them. It wasn’t just us, the poor kiddo hanging out near us in the Infusion Room waited on his transfusion for 5 hours, then was going to have to infuse for 5 hours – poor guy! But we are home now and we don’t have to go back till Tuesday! His ANC didn’t even register… it’s “zero’d out”. That’s the goal – bottom him out – KILL MR. C! Next, I have news that I am so happy to share (and for those of you that are FB friends you’ve seen some of this)… As we go thru this journey, there is a community of children like Jake. We follow one another. We may live in different cities and many of us have never met, but you wouldn’t know that. We have a connection. It’s called cancer… sometimes it’s Neuroblastoma, or Leukemia, or Lymphoma, whatever… but we’re connected. I’ve been following a little boy named Nate for a few weeks (same diagnosis and about the same age). Today, after 16 months of treatments they announced that “Nate is NED!!!!” NED! NED! – No Evidence of Disease! We LIVE to hear these words one day! I have happy tears for Nate and his family. There is hope! There is life! There is a happily ever after!!!!!!!!!!!!!!! Tonight, I pray for all children (for all people) who endure the pain, the fear, the needles, the loss of hair and awkward stares, the isolation, the long hospital stays, the upset tummies, the rashes, the bandaids and tape, the ER visits, the mouth ulcers, the medicines, the IV poles, the tests and scans and labs, the endless days in Clinic, the chemotherapy drugs, the lack of appetite, the weight loss, the mouth washes, the poking and checking, the multitude of student doctors and questions, the sadness and loneliness, the home therapies, the ports in their little chests and so much more. I thank God for each one of them and their fighting spirits to push on… I pray that they will all know NED one day very, very soon! There are so many miracles waiting to happen. We have faith that we too will be NED.
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!