Chapter 14:
P O V: Matt Casey
November 10th, 2018, 12:12 pm
I believe! Reese it's a miracle, Sylvie woke up yesterday! I am so relieved, my heart is beating so fast. I still can't get use to writing in you, uh maybe I am a bit chauvinistic but I never associated writing in journals as a manly trait. To me growing up to be a real man it meant smashing a beer can after chugging it, boxing to get your frustrations out, fixing things, holding your emotions inside, you don't cry you don't write them down.
Try telling that to your five year old son when he asks you why he/mommy write their feelings down in their journals, don't you have feelings about me having cancer daddy? I mean how do you answer that? Easy I write.
So I picked your name Reese because I'm here eating a Reese Peanut Butter cup my favorite yum, and Sylvie is giving me the death glare, she's only on TPN she can't eat real food yet, their going to try to ween her off the vent later today hopefully tomorrow she'll be on regular food.
Maybe than she won't give me death stares, I kind of like it though, I can't help but smile. She's adorable her face is so red right now, she looks like she wants to reach over grab the damn cup out of my hand and bitch slap me with it before shoving it down her throat. Honestly if it got her to eat I would let her.
Brent is so excited to have her down with him tomorrow they plan to transfer her as long as she remains stable. It'll be great to have them both in the same room. Gabby is so exhausted, I can see it taking a toll on her, she's with Brent while I am with Sylvie but we play double duty, both of us changing every few hours. Tonight she'll come up with Sylvie while I stay with the boy.
11/10/18 6:25 pm
Great news they took Sylvie off the vent she can breathe normally so happy! The hyperleukocytosis worked Sylvie's white cells have dropped dramatically! It feels so good to see her smiling she can't talk yet her throat is super sore due to the Trach tube which was down her throat. She's only on ice chips yet, which I am feeding her slowly the nurses warned me not to over due it because her stomach won't tolerate it well.
It's just amazing to see her awake, I can't stop staring into her eyes, all I keep wondering is. What if she really is my sister. We've missed out on so many years together. I keep going over how different our lives would have been if we had grown up together. Would we have a strong bond or would it be another broken relationship like the one I have with Christie? Or would we have been best friends who shared secrets? Leaning over I kiss her check thankful her fever has broken.
Chief came by tonight along with Kelly, Herrman, Cindy and Donna we met in Brent's room Shay took the kids down to the entertainment room. So we could talk it's obivious will be in here for awhile, Brent's doctors are still unsure how to deal with this last relapse. Chemo itself has proven ineffective alone, he's had two bone marrow transplants, their now thinking about a clinical trail or a third B.M.
Chief came to tell us that our furlough time was almost used up, we can't afford to go without pay, treatments alone are thousands of dollars, than there is the hospital stay, plus they charge you for each service such as anesthesia, an MRI, surgery, cancer patients receive so many tests, procurers one day can be thousands of dollars most insurance companies don't cover even half the costs.
He came up with a plan to help us one week Gabby and I will work, Herrman and Shay will come stay with Brent and Sylvie while we work, the next week Kelly and Emily will come, the week after Stella and Mouch will cover for us while we work, that way we never miss a paycheck, they've taken up a collection at both Molly's one for Sylvie the other for Brent.
I'm so overwhelmed with emotion, so grateful it's a reminder to me that this doesn't effect just us, the whole house is effected by what we are going through. Herrman told me today that Cashel and Kenny organized a fundraising event at their school, a talent show which they will charge ten dollars a ticket for and refreshments.
The love I am feeling tonight. Well it's hard to put into words.
Blessed.
Maybe not so hard after all. Lol
10:52 pm
Brent is so excited to see Sylvie tomorrow. He can't sleep...no he won't sleep, he's all smiles, bouncing off the walls, dancing singing, playing games. He doesn't seem sick. Maybe the doctors are wrong tests results get mixed up all the time, right? I know denial, I've been down this road five times, newsflash it sucks each time.
I've long since stopped trying to get him to calm down, honestly it's a relief to see him laughing dancing, clapping. I know all too soon the pain, sickness will start. Gabby is sleeping thankfully in the adjoining room Dr. Renee gave her lunesta a sleeping medication. She's curled up in bed covers pulled up to her chin Brent's cute little jester as he kissed her check and said a prayer for God to watch over mommy and let her sleep. He's so sweet, where did he get that from?
I can't help but admit I am jealous of Gabby right now.
11/11/11:15 a.m
The big day is here! Sylvie was transferred down Brent had to be restrained by Gabby and I to keep him from crawling all over her, she's groggy, still in pain and weakened. Yet her classic smile was there waiting for her hug from him, he crawled all over her bed smothering her in kisses.
His enthusiasm and love for her is inspiring he doesn't see biological relationships, or bloodlines, all he knows is his love for Sylvie is powerful all consuming she's his aunt period. Will it matter to him if she turns out to be his biological aunt? I doubt it can get deeper. Still I can't wait to ask her to get tested. Maybe tomorrow. I need sleep, right now Sylvie is starting on her clear liquid diet, or staring it down is more like it. Small baby steps Matt just be thankful she's awake and on the road to recovering. Herrman offered to stay tonight, but I can't pry myself away, I feel complete here with them, but I also feel an urgent need to be here. I've learned to listen to my gut over the last five years when it comes to my child.
11/12/18 5:32 am
Thank god I listened to my gut!
Sylvie had an allergic reaction to Cytarabine one of the Chemo medications late last night. She devolved serve rashes all over her body, she kept telling Brent she was fine every-time he asked, even as she was gasping for air because of the tightness in her chest. Thank god Brent is so perceptive, he has a strong memories of all his reactions. He had the same reaction last year when he was on Cytarabine.
Quickly he woke Gabby who woke me with her screaming, I raced out to get an RN but no one was around, apparently there was a birthday celebration for one of the RN's so they were in their break-room having cake.
The thought of what could of happened to her if he had been alone last night. I can't began to express my fears. By the time they got to her room she was almost in a full code, they gave her hydrocoritisone, it didn't work, so they tried epinephrine, finally she started to improve.
Things didn't stay calm for very long though, less than an hour later she woke up screaming clutching her stomach. Gabby was the first to notice the spotting, fear filled us both, miscarriage is such a strong fear for us. I called Antonio who got here as quick as he could. Dr. Manning quickly ordered an ultrasound which showed the heartbeat, so precious, so tiny yet so loud! Tears ran down Gabby's checks as Antonio clutched Sylvie's hands, it showed that the amniotic sac was starting to tear a sign of a miscarriage so she quickly ordered a CBC, than did a pelvic exam, I gave her privacy but Antonio and Gabby stayed, thankfully Brent was knocked out. Brett was started on progesterone and the symptoms seemed to have subsided, she's sleeping now.
I'm sleeping beside her now holding her because she's freezing, she's receiving two units of whole blood, and a unit of platelets. To get her to gain weight, she's on PPN now which means peripheral parenteral nutrition, it's helping her to gain back nutrients such as sugar, carbohydrates, proteins, lipids, electrolytes, and trace elements to her body. These nutrients are vital in maintaining high energy, hydration, and strength levels. Thankfully she has a port in her chest so she doesn't have to be stuck anymore in her already bruised arms, hands, they blew a vein last week.
They also have her drinking Ensure to help her gain weight but she keeps vomiting it back up. Antonio is laying next to her on her other side, I know he's worried about his kids, but the fact he came out here to support her helps. She needs all the love, support she can get, were trying to get her warm but she's really low on red blood cells right now.
I can feel my eyes growing heavy so I will talk to you later Reese. Peace.
11/19/18 Time: I have no damn idea
Exhaustion doesn't cover it Sylvie has been up throwing up for the last two nights, she has fevers, chills, serve headaches so bad she's passed out twice, she's having body aches, chest pain; tremors, muscle weakness, trouble standing/ walking; everyday twice a day PT comes to help her walk and excise she's pushing herself so hard to stay strong, but her body seems to have other idea's.
Gabby and I returned to work last week our days off were spent juggling between seeing Sam, relieving Shay and Gabby's mom of babysitting duties while Herrman, Cindy and Lily, Antonio stayed with Sylvie and Brent. This week we're on hospital duty.
I feel like I haven't slept in forever. I can't complain though, being back at work was a needed break for both of us. This week yeah it sucks seeing Sylvie this sick, she moans at night softly trying to muffle her voice and tears in the pillow but we hear it. We're taking turns holding her stroking her back but nothing eases her pain.
Cancer fucking sucks.
11/23/18 12;35 am
Thanksgiving is in two days, I can't get excited I love this holiday but this year well seeing as will be spending in at Med, I see no reason to get hyped. Yes I am thankful I have so many loved ones, yes I have been blessed in many ways. But we should be home not here.
We've made the decision to go ahead with a transplant for Brent, he's been entered into the registry, they've started him on Chemo. Yesterday was his first watching him and Sylvie together compare names of Chemo drugs and the colors was comical they both have a wicked sense of humor.
They also get each other in trouble. Yesterday she taught him how to take spare syringes fill them with apple juice and spray nurses as they walk in, of course being the Peds floor no one gets mad they get even. Brett has a true mischievous side to her she took the apple juice filled it in a cup used for pee tests and pretended to drink it in front of a new RN who gasped screaming running out as Brent laughed so hard he almost peed. I'm pretty sure Susie the RN she played this trick on knew what it was but went along with it, bless these staff members for their love, compassion and willingness to go above and beyond. It was great to see these two laughing, joking even as they had poison dripping into their bodies.
Poison I try not to think about it, yet when the staff administering has to wear gloves because the chemo can burn their skin off if it accidentally gets on it, it's hard not to think about it. This shit is going into my child's body, into my unborn niece or nephew's body. I really need to let go of this idea that she's my sister until I have proof.
I can't help it though. I already love her so much.
11/25/18 1;13 pm
Yass we have a true blessing to be thankful for! Remission! Sylvie gets to go home! Today! We've gotten a pass to take Brent home as well! I can't be more thankful! Thank you God thank you lord Jesus! Thank you Chicago Med!
We're heading to the firehouse for a true celebration 51 style!
Our journey isn't over by a long shot, but we get a reprieve. You take your blessings when you can.