Monday, August 26, 2013

Round 6: The Joke That Never Ends

So here it is Monday Morning, a week since chemo was supposed to begin. Not only has it not started yet, but Spencer is currently on his way to the OR for surgery. I can not measure on a scale how sad, disappointed, frustrated, and any other furious/emotional/aggressive adjective I am.

Spencer finally got scheduled for a new PICC line this past Friday at 2:00. It was supposed to be a simple procedure that he has had twice before. Pre-procedure was a bear because he wasn't allowed to eat. You try telling a hungry 2 year old that they can't eat with good results. And since he couldn't eat, I couldn't eat. We were unhappy campers. Campers who could've EATEN A BEAR.

I wasn't allowed to stay in the room this time because there was a large group so I went to the cafeteria and cried. I felt very lonely. Especially after my phone died. I tried reading W magazine but it wasn't for me. And seemed slightly inappropriate a for a pediatric waiting room. Lots of jugs. Not the point. The procedure was supposed to take an hour...1.5 hours later, a nurse came out to tell me they THOUGHT they had the line in but it was a struggle. Waiting for X-Ray confirmation. I was warned that his veins could have scarring from having a PICC in each arm so recently but it seemed like it was working out. He was metabolizing the sedation meds too quickly so he was maxed out. And even then he moved during the procedure. I was glad to get an update because I was in a panic.

Which continued another half an hour. They finally came out and told me that after further attempts and going beyond the maximum dose of sedation meds, they couldn't get the line in. Bust. It got up to the armpit and stopped, most likely due to scarring. The PICC team was not going to try again. And it was almost 5:00 on a Friday at this point. If anything was going to be done, it had to be right then or after the weekend. I called Todd and cried. Called my mom and cried. And the choked back anything I had left when they told me that Plan B had to wait until Monday, 1 week after his planned start date and 10 days after he was admitted to the hospital. Heartbreaking.

Plan B means surgery.

Since he couldn't get a PICC line, he has to have a Broviac again. This was the first type of line he had. He'll be intubated and under anesthesia and probably require morphine after. It's much more intense and scary. And I'm not with him with makes me feel like a toad. His dad is there and I'll be there later but I have the worst feeling that I should be there NOW. They've already taken him to the OR and now I wait for an update. It's a long wait. The whole situation is getting so painful.

Didn't get to update until now, Wednesday. The surgery went smoothly and he now has a Broviac on the right side of his chest. Chemo has been running since Monday around 3:00, I think. FINALLY!!! So far, he's doing pretty well. He's been a little clingy but he did just have surgery. Monday evening, they gave him some steroids because it sounded like he was having some difficulty post-intubation but that cleared right up. And last night at dinner, he spit some of his food out which usually doesn't happen so early. Hoping it was a fluke.

Now we just wait. Chemo will wrap up Monday but we have weeks of recovery ahead. Weeks stuck in this room. I'm trying to take it one day at a time. I know it's the last round and I should be thankful but that doesn't make it any easier to be here. Netflix helps. Visitors help (thanks for the tomatoes Natalie!!). Last night my mom sat with Spencer for an hour while my dad and I went to Little Italy for dinner. Best steak I've ever had at Trattoria Roman Gardens! A steak and a Peroni, a quick shower, and back to hospital life.

I realized for a second that it's only Wednesday and almost cried. Keep telling myself that I get an extra day at home this weekend because of the holiday. And I already cleaned the house so I SHOULD just be able to relax with Sully, who just turned 11 months old. I miss him so much, I feel sick. All of this is so unfair to him, too. I know I've said that before. And I'm the least important out of anyone in this situation but I'm feeling low because I probably won't get to go to school this semester. I arranged for my classes to start September 10th but it's looking like we'll still be here. It hurts. Puts me s semester behind, further from being a nurse.

But it is what it is.

Hopefully our time here will be boring (unlike yesterday when Spencer unhooked his chemo and the line acted like a vacuum, coating us in a damn crime scene). But I'll update in a few days. 

Thursday, August 22, 2013

Round 6: ...Has Not Started Yet!

A lot has happened since I last babbled at you. The biggest bombshell being that Spencer ended up having another line infection so...goodbye PICC. They pulled it before I even got here on Monday because he was still having fevers. No line means no chemo. The setback I was dreading. The domino affect all started from the fever. Sigh.

The bacteria he had is NOT what he had last time but is another super common bug. We aren't surprised but we are disappointed. A 7-10 day course of antibiotics was ordered and as of now, he is infection free. We've basically just been sitting around the hospital room waiting to get this show on the road. It's exhausting, believe it or not. I miss my home and Sully. But Spencer needs me most so I'm where I'm supposed to be, I guess.

The plan is to put in another line tomorrow. His 5th line since this all started. I hate when he's under anesthesia/sedated. And I'm in a panic that they won't be able to put in a PICC and he'll have to get a Broviac. That's a much bigger deal and he'll have to be intubated. Hate that. But we won't know what's what until tomorrow.

And just because he has a line doesn't necessarily mean chemo will start. We have to wait and see what the big dogs say. And they're still debating about whether or not he can recover at home. He NEEDS this line to last a few weeks post-chemo in case he needs platelets or blood during recovery. So I guess they're worried about him getting another infection. This is the most upsetting. I'm already doing 2 Monday-Saturday shifts. I don't want to be here for weeks on end. It's bad for all of us.

Spencer has had some visitors which is good for both of us. And I have school applications and wedding planning to keep me busy. Because chemo is still delayed, I did have to change my schedule around. As of now, I don't have to drop out for the semester. I really DON'T want to push things back again. I should have started a nursing program THIS semester. My mom suggested pushing it back anyway thinking I've got too much on my plate, and I probably do. But I really wanted this, for myself and my family. I need to keep moving forward.

So that's where we're at. Surgical procedure tomorrow and Round 6 of chemo, the final round, following at some point. Hopefully I can keep my head screwed on, at least until I get to go home for my break on Saturday. Per usual, thanks for the continued support and awesomeness. I'll never be able to  adequately describe how much the support means to us during this extremely draining time.

Sunday, August 18, 2013

The Grand Finale: Round 6, The Last Round

A few days ago, I took Spencer to his weekly clinic visit and shockingly, he was pretty much recovered and ready for treatment. He's been a week delayed these past few rounds so I expected the same. I'm not sure why since he's been doing his own things regarding his chemo from day one. They pushed it until
Monday to make sure his ANC was for sure above 1,000 but the date was set. The final round of chemo would start this Monday. We would be back in the hospital to finish what was started in February. Again, as always, I want to finish but I don't want to go back so my whole body has been in knots. I'm in a bad place.

And his hair is thinning again so my eyes seem to leak from time to time. Need to get that fixed. Nuisance.

The lovely Bride-To-Be, Lisa, arrived on Thursday for 2.5 days of non-stop wedding planning. I was so happy to see her and to shut my brain off for awhile. And we were MACHINES! She saw the venue, got her ensemble, my dress, wedding color samples, checked out specialty linens, a photo booth, tasted the proposed menu and cocktails, and CAKE, settled on a hotel and planned out the pre-wedding primping, and on and on and on... I haven't been so productive in 2.5 days...ever. And even though I lost the battle to not have to give a toast, it was so awesome to eat, drink, talk, and see her happy. That made ME happy.

Until I WASN'T happy. 

Nothing ever really goes as planned these days and Friday night, Spencer had a fever. The docs on call said we had to bring him downtown and if his numbers were good, he'd get meds and go home. If not, he'd be admitted. Todd had to take him since I had company and plans. Since Lisa lives in Arkansas, this MIGHT be it as far as us planning together, face-to-face. So at 11:00 Friday night, my miserable boys were off to the hospital. By the time they got there, the fever was gone and he numbers were good but after his antibiotics, he was admitted anyway. My heart broke. We were robbed of our last weekend.

In the morning, Lisa and I took all of Spencer's hospital supplies to him. I loved waking up and having her in my house. Sigh. My little guy looked great! But I guess as the day went on, he wasn't. I'm suspicious that it's the line again because everything was so similar. He was whimpering in his sleep, throwing up, and the fever was back. I haven't gotten an update since last night when he had fallen asleep so hopefully things have turned around. Chemo was still scheduled to start tomorrow so hopefully it's on track. It NEEDS TO BE. School starts next week and I need to be on campus and unless I transform somehow, I can't be in 2 places at once. But of course, finishing chemo is the most important thing. This nightmare is actually ending.

And my fun visit with Lisa ended, too. After a nice last lunch, I dropped her at the airport. I can't wait to see her again, even if it isn't until the wedding (I'm very excited about my dress and potential hairdo!! Very 50s/60s and cute). After Sully and I showered up, we managed to make a quick visit to Granger Danger to see friends I never see, The Yokels, and A-Train & The Steamers. Sully was happy to party and even though I was there briefly, I was happy to not miss out completely. But was I really happy? Not knowing that I have to go back to prison on Monday. No sir.

Well, my little redhead is awake and calling for me, and we have a big day ahead. Filling out nursing program applications, getting my supplies for a week at the hospital, and making a picture board for Spencer's last round. Is it weird that being at the hospital might actually be the first time I get to do nothing in weeks?? 

Can't believe the light at the end of the tunnel is finally visible.

Friday, August 9, 2013

So Happy Yet Sort Of Sad: Mixed Emotions At The Same Time Every Year

I can't sleep. I need to empty my brain. I'm going to get the sad stuff out of the way to get to the good stuff, and it's really good stuff so I don't want it overshadowed. I'm eating a cupcake in bed just to try and mellow out.

2 years ago today was the worst day of my life. 2 years ago today was the day a doctor came into my hospital room and said that Spencer looked good but... But. I can still feel how long that pause felt and how my heart shattered, though I refused to believe what they said. Then life continued to fall apart as Spencer physically struggled and they took my baby away from me at not even 1 day old. I had him with me every day for 9 months and then he was gone. But the Spencer I expected was already gone.

Let me interject and say that the Spencer I have is AMAZING and I wouldn't trade him for the world. Thinking of not having this boy in my life is too painful to even ponder. I am so lucky to have him! I just didn't know it right away.

Every time that day pops into my head, I have to play out the whole scenario in my head. I can't bury it. I have to relive it in order to sort of let it go, at least for that moment. I was getting much better about the whole thing for awhile. I couldn't be sad about who my son is. I wouldn't be! He's AWESOME. But recently, here and there...I just keep worrying about the future. I can't keep him small and safe and protected from name-callers and bullies forever. 

Especially since yesterday he turned 2!!!

And that's where the happiness flows in. My baby boy, my best pal, my TODDLER! He turned 2 and we were not in the hospital for it! We may have had a rough start but the past 2 years have been incredible with him. He's so much like us. He's so silly and funny (or he thinks he is!), creative, stubborn, determined, interested, forgiving, sweet. He's full of love. And he's the most loved little boy (along with his redheaded, crazy brother, of course). I feel like he was just born and I feel like he's been around forever. It's cliche to say but I never knew I could love someone so much. 

My kids are the reason behind everything I do now. I had a pretty fun life before them and I'd probably have a pretty fun life if they didn't exist. But the life I have WITH matter how painful and challenging at INCREDIBLE. And they haven't just changed me. They've changed people around me, especially Spencer. He paved the way with people who weren't exactly "kid-friendly". When I saw the way Spencer was shocked when he saw Aunt Phoebe yesterday, practically leaning out of the stroller and doing a double-take...yeah, those 2 are friends for life. If you would've asked me 2 years ago if Phoebe would be willingly holding and playing with my kids, helping keep them safe and well-rounded...well, I prefer it this way!

So yesterday...8/8/11. I think Spencer had a really great birthday. And it was only phase 1 as his little family party is Sunday. His ANC is low so we had to be cautious about what we did. We decided to go to the county fair as it was free before 3. Being in his stroller in the fresh, sometimes animal-secreted air seemed OK. And a power outage in Brooklyn scored him some pals to tag along! 3 cousins, Aunt Phoebe, and his new pals Jess and Harper headed to the fair (along with Todd and Sully!!). It was a ton of fun. Spencer is CLEARLY into animals as he pointed at ALL of them...and even touched a goat. He split a strawberry shortcake with his brother and watched the pig races. Being the people-watcher that he is, this was right up his ally.

We headed home right before the storm and had some downtime before a few family members popped in to watch him open his presents and have a cupcake with the birthday boy. He was SO HAPPY! Especially when his new teepee (which projected stars around the top) was assembled. He. Loved. It. I encourage all parents to get one. It's a B Brand toy available at Target. So amazing. Fall/winter clothes, new musical instruments, a backpack for school, a new cork board, toys for chalking, and a little Minion made by Grandma. He loved it all but the teepee reigned supreme!

He didn't shy away from pizza and a Cookie Monster cupcake, that's for sure!

It was really a great day. Everyone was happy and smiling and laughing. And it wasn't insanity, which my life has felt like lately. The day just ran smoothly. Organically. I needed that because things are going to be straight chaos again. Wedding tomorrow (LOVE weddings), party Sunday, Spencer has an appointment Monday, clinic Wednesday, 2.5 crazy awesome busy days with the lovely Lisa (!!!), Granger Danger, and prepping to go back to the hospital to wrap this chemo bullshit up!!

Speaking of hospital stuff...

We've had 2 clinic visits since he came home. He got platelets once but it has been uneventful otherwise. His ANC is 10 so he's bottomed out. His platelets and hemoglobin are great so he's recovering. He's scheduled to start chemo next Wednesday but since his ANC has to be over 1,000 it is very unlikely. An extra week off seems to be the norm and I'll take extra time at home! But soon enough...we'll have nothing but home time!! And I will not take my home life for granted ever again! Mark my words.

I feel a little better so I think I'll watch Project Runway while I wait for my pals to wake up for some more summer fun!