{"id":3281,"date":"2014-03-11T16:24:41","date_gmt":"2014-03-11T22:24:41","guid":{"rendered":"http:\/\/jacobhickford.com\/?p=3281"},"modified":"2014-03-11T16:24:41","modified_gmt":"2014-03-11T22:24:41","slug":"unhooked-and-loved","status":"publish","type":"post","link":"https:\/\/jacobhickford.com\/?p=3281","title":{"rendered":"Unhooked and Loved"},"content":{"rendered":"

\"2014-03-08<\/a>Our week on the floor is almost up and Jake has done great.\u00a0He’s been unhooked\u00a0in 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!\u00a0We 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. I\"J<\/a>t’s true. Jake has a little friend, James, that he’s\u00a0been 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,\u00a0lots of walks,\u00a0and games of let’s see if we can scare Nurses Stacy and Danielle.\u00a0 (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!\u00a0 Hahaha! And in another, he’s hiding behind the pole while they search for him.\u00a0 We don’t really know what the future holds right now\u00a0 – after th\"2014-03-09<\/a>ose last scans, we were all thrown for a loop and\u00a0are 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\u00a0focus on talks with a couple of out of state hospitals, unless something comes up quickly\u00a0here at\u00a0TCH. Jake has been coughing\u00a0(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.\u00a0Every time he\u00a0does 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 time\"2014-03-09<\/a>s 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\u00a0for presenting Jake with some medals that he earned while running and cycling on Jake’s behalf. Rafael is running for many of our friends,\u00a0spreading the message,\u00a0and we are honored to call him friend.\u00a0Jake’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 h\"2014-03-10<\/a>as 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\u00a0kiss 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\u00a0says 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,\u00a0I 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,\u00a0so 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. DR\"2014-03-08<\/a>OPPED IT!\u00a0 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,\u00a0through muffled speech he cried,\u00a0“Mommy please don’t ever leave me. I just get\"2014-03-08<\/a> so scared and I can’t take my medicine”. I won’t lie, he is\u00a0a professional procrastinator, but some oral meds\u00a0send him into a full fledge panic attack, and it’s heart wrenching. He continued to\u00a0ask me over and over to never leave him\u00a0for a good 24 hours. As parents, holding\u00a0our kids\u00a0down 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\u00a0open\u00a0because 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 hu\"2014-03-10<\/a>rt!”\u00a0The 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\u00a0push through. But sometimes, you just can’t do it without help. So thank you to the beautiful\u00a0ladies of the 9th floor.. Leah, Stacy, Monica \"2014-03-10<\/a>and Danielle.\u00a0Their patience and understanding… and heartfelt help getting those meds down means more than\u00a0they will ever know.\u00a0We love and\u00a0are loved by the BEST nurses ever!<\/p>\n","protected":false},"excerpt":{"rendered":"

Our week on the floor is almost up and Jake has done great.\u00a0He’s been unhooked\u00a0in 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!\u00a0We love them and they have hearts of GOLD – truly! As much … <\/p>\n

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