Unhooked and Loved

Our week on the floor is almost up and Jake has done great. He’s been unhooked in between treatment to run around and play with friends and his nurses. And I have to say that TCH has THE BEST nurses in the whole wide world! We love them and they have hearts of GOLD – truly! As much as we didn’t want to be inpatient right now coming off of our trip, he’s had a pretty good week. There is a little poem out there that talks of hospital corridors becoming our kids playgrounds, clinic being their classroom and so on. It’s true. Jake has a little friend, James, that he’s been up and down the halls with for days. James rides his scooter and Jake comes along beside him “taking walks” (without mom). He tells me, “I’m going for a walk now, it’s ok, you don’t have to come.” Thankfully, it’s been a week of little boy laughs, hide and seek, chase, Zombie hunts, lots of walks, and games of let’s see if we can scare Nurses Stacy and Danielle.  (In fact, look closely at one of the pics, those are his Zombie nurses laying on the floor after he shot them and ran off in his force field. They are LAYING ON THE FLOOR!  Hahaha! And in another, he’s hiding behind the pole while they search for him.  We don’t really know what the future holds right now  – after those last scans, we were all thrown for a loop and are having a difficult time coming up with his next steps. We’ll scan in a couple of weeks to determine where he stands. This next week, we will focus on talks with a couple of out of state hospitals, unless something comes up quickly here at TCH. Jake has been coughing (allergies we think) and continues to make those little throat clearings and this really has me on edge. The cancer in his lungs is on my mind every second of every day. Every time he does it my head whips around and he’s begun telling me, “I’m Ok, mom”, before I can even ask. Or he gives a thumbs up to signify that he’s fine. (I suppose I’ve been asking if he’s ok too often.) He has an appointment to check his hearing again soon as we’ve noticed that he isn’t responding at certain times and when we are in public spaces, he says he can’t hear us because it’s too loud. We’ve had some visitors and have to say thank you to Rafael de la Torre for presenting Jake with some medals that he earned while running and cycling on Jake’s behalf. Rafael is running for many of our friends, spreading the message, and we are honored to call him friend. Jake’s bestie, Maddi, also came play and venture thru the halls with him. He’s been sweet as sugar and his “chemo brain” from treatment a couple of weeks ago has subsided. His big thing right now is to say, “Mommy come here. Come closerrr. Come closerrrr. Clooooserrrr.” Then he grabs my neck and plants a BIG kiss on my cheek. He constantly tells me, “I just lub you, Mommy” and “You’re the best mom eber and I’m so glad I choose you.” He blows kisses to me and when I blow back, he catches them and rubs them on his face and heart. He says, “I lub my fam-all-y”. (But on those occasions that he is mad at me, he says he wants to “kick me out of the fam-all-y”). We play the I Love You More Game… I love you more. No I love you more. We go back and forth with, I love you to the sky, moon, sun, stars… now he just cuts to the chase and says he loves me to Heaven. It’s the furthest and best place he can think of, so he wins. We’ve had some hiccups with his meds this week. He’s on two chemo drugs, one is oral, one is IV. One day, I dropped his oral chemo. DROPPED IT!  We had to clean everything in gloves and with special, super-duper wipes. Then our nurse had to call to pharmacy, explain what I’d done and re-order it. That takes time so we got off schedule there. Then we had issues with him taking the chemo… to the point where Dad and I were going to have to leave the room and let our nurses assist. His chemo has to be given on a schedule and he was really stalling and fighting us. After it was over, through muffled speech he cried, “Mommy please don’t ever leave me. I just get so scared and I can’t take my medicine”. I won’t lie, he is a professional procrastinator, but some oral meds send him into a full fledge panic attack, and it’s heart wrenching. He continued to ask me over and over to never leave him for a good 24 hours. As parents, holding our kids down and squirting meds down their throat is no fun but you do it because you know you have too and it’s not like it will happen daily. For a cancer kid, meds are daily, it gets old quick, and you start to wear down. Your heart rips open because it shouldn’t be this way and sometimes you just want to throw the meds against the wall and scream, “no more, not today, missing this dose won’t hurt!” The truth is, it will, and so you bribe, threaten, plead, sometimes leave the room to someone else holding them down, and do what you must to push through. But sometimes, you just can’t do it without help. So thank you to the beautiful ladies of the 9th floor.. Leah, Stacy, Monica and Danielle. Their patience and understanding… and heartfelt help getting those meds down means more than they will ever know. We love and are loved by the BEST nurses ever!