As I’ve mentioned… it’s day-by-day, moment-by-moment… and today we are home. We were supposed to meet with the BMT (Bone Marrow Transplant) Team today but because of yesterday, it has been moved to tomorrow. Did ya get that??? Kinda riddlish. 🙂 Yesterday WAS HARD. We were at TCH all day. Jake looked bad. He was ashy and weak, his lips had no color, and he was lethargic and exhausted. I was terrified, and I think I had one of my first “in-Clinic”, full out, fall-apart days. It started with our wonderful NP, Peg, confirming my fear with, “He doesn’t look good, Mardon. We have the day to watch while he’s transfusing but I expect his fever is going to fully present itself so I’m going to call over to the 9th so they can prepare a room”. Thank God for our wonderful nurse, child life specialist and social work counselor. They just let me ball, off-and-on, all day. When we got there, Jake’s temperature was trending upward and with everything going on at home and the week ahead, I just couldn’t wrap my mind around the thought of another unexpected hospital stay – and that’s what they were prepping us for. (Oh, Kate and Ry were home sick and I couldn’t help either one of them). Jake’s cough was horrible and Peg said that he was exposed to RSV last week while we were admitted on the 9th. They didn’t know it then, but one of the kiddos was sick with it, and was in the playroom… we spent a couple of days in the playroom and it’s the likely culprit of Jake’s sickness. Because of this, we couldn’t hang in the infusion room, we were isolated in our own little room – completely understandable and frankly, it was nice and quiet since Jake felt so bad. As the day wore on, we watched his tem yo-yo. They juiced him with blood and platelet transfusions, and we waited. They called the 9th floor of West Tower and ordered a room and started the admit process. I kept saying, “let’s just see”. And, kindly, they did. By 5:00, the best words ever said… GO HOME! We grabbed everything and ran before they could change their minds. And today, here we sit, at home, still in jammies! (it’s 3:00 btw). Funny how transfusion will change everything for these kids. If you are a blood donor… let me say, THANK YOU! Your gift, gives our son life each time they hook him up. And it’s often! So now we head in tomorrow for tests and labs. To end… let me say how very, very much I appreciate all of you that are following Jake’s story. For all of you that shared the information I posted two days ago. it’s important and YOU are helping…. THANK YOU and GOD BLESS YOU for doing that. I have something else to share tomorrow, and I’m going to ask for your help again, I hope you don’t mind. In the meantime, Jake is maintaining his temp beautifully, I have the timer on the oven set to make him drink every hour, and he’s doing so much better today. Oh also, thanks to one of our nurses, Jake has a new fave drink… Dr. Pepper. Ugh… total sugar. But the cals and sugar are just what he needs so all of my mommy rules have jumped ship and Dr. Pepper it is!!! For now, Jake sits comfortably… happily… with all the things a
“Mommy, I just lub being home! And I really lub you!” I think if I write much more than that, I’ll cry. Just want you all to know that we’re home. He’s still having bouts of nausea and will for days until the Cisplatin is out of his body, but he’s doing well. He plays, he makes a run for the blue bags, then we play some more. So, so, so very happy to
be home! I’d like to ask you all to please pray for a new special friend, Mackenzie. She spent her 9th birthday on the floor with us this week. She’s on her second relapse, she’s just precious, and she’s having such a hard time knocking out her fever so they can begin her stem cell transplant. Her sister is her donor and I pray that God will give her and her family all they need to get through this time. I pray strength for Mackenzie to fight the fever that is putting her procedure on hold and prepare her body to fight hard with no complications or rejection. I’d also like to pray for Carson… his port came loose last night and chemo spilled under his skin and on it. These drugs can burn holes in your skin, cause horrible rashes and do awful stuff. We’ve met him twice now, he’s five years old, and such a cutie. Wishing God’s blessings and healing for them both.