Round 6: Officially Unhooked

That post title might lead you to think that I'm saying I personally have become unhooked...and maybe that's true. But what I really meant was that Spencer is unhooked from chemo!! It's over!!! Monday evening, he finished by 6 rounds of chemo and now we're in the recovery period. Waiting for his numbers to drop and come back up so we can get the HELL OUT OF HERE and never look back! I don't want to see these pajamas. I don't want to see these toys. I don't want to watch Wreck It Ralph or The Lorax for a LONG time. I don't want to report everything he eats or drinks. I don't want someone coming in during the night to take his vitals. I don't want to only have short weekend visits with Sully.  But how long until I get to see this place in my rear view mirror??

As of now, Spencer has been here 20 days.

His ANC is acting a little nutty but chemo just ended so that's common. 710, 690, 1162. Usually it drops to nothing, comes back up, and we bolt. But not always. Sometimes he never bottoms out so we just get cut loose. The docs thought he'd establish a pattern in the next day or 2 BUT the line doesn't seem to be working. It will flush but won't draw blood!! Now this isn't as earth-shattering as if he had a line infection. But we need this line for a few more weeks. They give him anti-nausea meds through it, do blood and platelet transfusions, and draw daily labs. They managed to get it working yesterday so hopefully they can kick start it again. At least the situation isn't hurting him.

Though SOMETHING is.

Tuesday night, Spencer cried for over an hour which is unlike him. After he eventually DID fall asleep, he'd wake up every few minutes whimpering and sitting up. Just seems miserable. And he's spitting out every food I've offered, only drinking a little milk. So they suspect he is in some pain, possibly from irritation in his mouth and throat. He's had Tylenol and Morphine here and there. Did a lot of sleeping yesterday, poor guy. I did enjoy the extra snuggles though. It's nice to be needed.

So the countdown to going home is on and it's really anyone's guess as to when this might happen. Up to this point, the longest we've been admitted for a round has been 23 days. We're going to see that come and go. I just want my family to be back at home together and for our life to go back to normal. But honestly, I won't feel real relief until after his bone marrow biopsy comes out clean. I've got a bottle of Southern Tier Pumking in my fridge to celebrate getting the phone call saying this nightmare is over. I'm ready for it.

I had a really great long weekend with my family, friends, and my main Moose, Sully! I've got the happiest baby on the planet and he's going to be 1 soon!! Sniff, sniff. Everything just feels right when I see him. We made the most of every minute of every day. I came home to a spotless house (thanks parents!!) so I just got to relax...even though I never really stopped. Went to dinner and had a cupcake baking party with some of my family, watched Grey's season 9 now on Netflix, hung out downtown, shopped for and cooked real food, and went to Oktoberfest!! That was definitely the highlight of my time home. I was so happy all day. Best Labor Day ever. I have the best friends anyone could ask for. They keep my head screwed on. I felt ready to come back on Tuesday. I made the most of my time.

I'll never take my free time for granted again.

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.

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 them...no matter how painful and challenging at times...is 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!

Half Of The Year Is Over: Sailing On

This may be a long one. Ramblin' on.

First off, thanks to everyone who was concerned about my health nonsense last week. It took a day or two but I returned to normal, or as normal as I've ever been. If anything like that happens again, I'll head straight to my doctor because it was slightly unnerving. I'm thinking it was a migraine and probably stress related but I'm no doctor, even if my alter ego is one. Dr. Armshoulder Shoesnshorts. 

We had out first impromptu pool party of the summer last weekend. I'm feeling pretty good about my bikini body but I still have some poundage to drop. Not the point. It was fun to see some friends, old and new, and it was especially rad to have the 3 babies born back to back to back, Colton, Sully, and Noah, together. It's funny that we all had babies at the same time. Sarah and I even had the same due date. Guess we were all bored on the same night. ZING!

Monday we went to the aquarium and while it was a blast (Spencer lovvvvves sealife), I can officially say I don't need to go back. Even at the reduced price. We went to Shooters, a.k.a. 1984 Miami night club, for lunch and all our good times went sour. It was clear that Spencer's PICC had come out a little. Black dots on the line let us know if it's still in place. Where we were supposed to see 1 or 2, we now saw 3. I was heartbroken. If the line moved, that meant another surgery for Spencer. I was so hoping the PICC would make it through his last 2 rounds, though I knew it was a long shot.

The doc on call said there was no need for an emergency visit so I headed downtown with Spencer on Wednesday per usual. The line had moved, but we knew that. They were able to draw his blood and flush his lines so it seemed to be functioning. The draw showed that his white count was low which was to be expected but his hemoglobin and platelets were normal on their own so no need for transfusions. We went for a chest x-ray and he got his bandage changed (the WORST), and then we discussed a bunch of stuff.

Spencer, schedule-wise, would be set to start chemo on July 3rd, but that doesn't mean his ANC would be ready. Since there's the holiday and all (a holiday I actually love for some reason), we're going to wait a hot second. In fact, since his transfusable items looked so good, we don't even have to go downtown this Wednesday!! We'll go around the corner to have labs drawn and if everything is A-OK, he'll start Round 5 on Friday. If the numbers are not favorable, it'll depend how low they are as to when we'll check again. He was a week off last time. With every round of chemo, you bounce back more slowly. I want the home time (and it would be nice for Todd to go to Tessa's wedding but my wife will be a lovely date), but I want this shit DONE!! 2 rounds left.

An exciting exchange had to do with recovery. His doctor said he'd be more inclined to keep him in the hospital after his 7 continuous days of Chemo because he's getting one he's never had before. Not to say it's more intense or anything, it's just new so there's no way to say how Spence will react. However, since he's done so well at home and has really kicked ass with every round so far, recovering at home is once again open for discussion!!! Being at the hospital is not the best place for him once the chemo is unhooked (I do like that they've got their eyes all over him while that's going on) and it's not good for me, either. So I've got all appendages crossed for home recovery. 

As far as the line goes, the x-ray showed that it has moved to the top of the superior vena cava but is still centrally located and functioning. His doc is comfortable with continuing to use the line but he's looking into hospital policy. If they insist it be threaded further down, he'll have to go under anesthesia to have the old line removed and the new one place. I would prefer that NOT happen so  anything that can be crossed to crossed regarding that mess, too.

In the meantime, Spencer has kept up with all his therapies and is kicking ass left and right. He's getting stronger and standing more and becoming more and more verbal. He's in the 50th percentile for height and below the 5th for weight but he eats so they're still predicting long and lean. At the end of this month we'll start preparing for him to enter the classroom for a 2-days-a-week Early Intervention Pre-School. He'll get all his therapies plus snack time, gym time, and a lot of socialization with kids his age. They said his expressive speech with explode once he's in the classroom. When she told me he'll need a little backpack I almost cried. He's going to love school! But I'm not ready for such a big milestone. Sniff!

My Porkchop just turned 9 months!!! He is amazing!! They keep saying he's ahead, especially with gross motor. He's trying to take steps every day! And he recently added "kitty" to his vocabulary. He's in the 75th percentile for height and the 10th for weight but his doc said a lot of 9 month olds just sit and play and Sullivan is constantly active. He's doing amazingly and I love him to PIECES. Ask anyone, he's the happiest baby ever. Best little brother. He'll be 1 before I know it. I'll need a tranquilizer on that day.

So outside of mom stuff and family life, I've been pretty busy with school and even with friends, outside of the pool party. Sully and I visited Potsie and Nick at their awesome new digs. On Thursday I went on a roadtrip to visit one of my best friends who had a horrible surgery with horrific complications. I felt terrible for her and worse that there was little to nothing I could do to help. I hate that she doesn't live closer so I could clean up, run errands, etc. Again, it reminds me that we are not special. Garbage is happening to everyone. She's done so much for me and I can't repay her. After that, also on the road,  I visited the bride-to-be, Tessa, and her new digs. I miss her painfully. Friday she was in my neck of the woods so we all got together in a fun group for the ItalianAmerican Summer Fest. Awesome time. And last night we stuffed ourselves silly at Chocolate Bar for her last big night out before the wedding. Get the pecan-crusted chicken and a hot chocolate to go! The martinis are also epic. 2 weeks until the wedding!

So that's my story. It's a lot, I know. And my To-Do list is ever-growing. Homework, PT for Spence tomorrow, a family function and blood work Wednesday, holiday fun, and the possibly back to the hospital (which means I need to wedge packing in there somewhere).        So maybe I should get out of bed. But the babies are still sleeping so...

Not Quite: A Welcome Delay

Yesterday we headed back to the hospital to start Round 4 of Spencer's chemo. But after a routine blood test to make sure his counts were ready, we were sent home for another week...so I'm bed-blogging. My favorite place to babble and blather. And my boys went to the sitter's to play with the kids so I could get some more stuff done around this joint. Plus they need some time to interact with other little monsters. An extra week at home. I want to get through the second half of chemo but I'll take it!! I was on the fence anyway. I wanted to get this whole nightmare over with, but I wasn't ready to be stuck there again.

The good news is that his doc mentioned him coming home again! He said it's up to the doctor on the floor at the time but that he's going to push for it. This would mean only 4 or 5 days in the hospital and 3 to 4 WEEKS at home!!! I can handle that. I would LOVE THAT, especially seeing as school started Tuesday and it is a much heavier load since summer semester is shorter. And Spencer belongs at home. I don't care if he won't remember any of this. I WILL. A kid belongs at home with his family having fun in the summer. 

And don't worry, the fact that he couldn't start yesterday doesn't mean anything concerning. His marrow is working as evidenced by his platelet and hemoglobin

counts. The ANC is just taking its time. He's in Remission and doing amazingly. He's really showed those doctors a few things!!! Hopefully next Wednesday his numbers will be up and we can get down to business and then hit the road. Get him home for Father's Day! Chemo runs for 96 hours straight. That's enough hospital time for me.

Speaking of hitting the road, I think I'll go

running before I start ripping this place apart. I was going to babble about what we've been doing during our down time but this may be the only time I have for an early morning run alone (and I'd like to see another pound gone at my next weigh-in). We've spent a lot more time at home during our break. Eating, opening the pool, house projects...and that suits me just fine. Normality. Normalcy. 

Thanks for the continued support! We appreciate every last drop and wouldn't get through this without the people who have rallied around us! You're all awesome!

Round 2: An End To The Madness??

It's been over a week since I whipped up a Spencer update. You'd think I'd have tons of time for this but I just don't. When I'm here, I'm occupied with Spencer and school. There is very little down time. People in and out all day and night. And at home, it's all about school work and Sully. Blogging isn't top priority. But so many people have been SO supportive and care SO much, that I want to make sure to keep people informed. I love how much he's loved. Plus, posterity and all that jazz.

There's really not too much to report. But I always say that and find a million things to say. We're still at Seidman. Spencer's numbers bottomed out as they should and it's just been a waiting game for them to recover. He's been throwing up and hasn't had much of an appetite, which is a little odd because his side effects from chemo should be over by now, for this round anyway. He still has his mohawk! It's thinner but overall, he didn't really lose all his hair! We'll see what happens in future rounds.

Unfortunately, from so many antibiotics, he got C-Diff (most common cause of poop attacks in the hospital) and has been filling diapers like a mad man. He'll be on a different med (an antibiotic to get rid of something caused by an antibiotic, bizarre) for awhile to clear that up but night time IV nutrition and fluids and lipids are keeping him hydrated and fed. His weight is actually up from his admission...21 days ago. He's 10.6 kilos/23 pounds!

Last week, some sort of nightmarish stomach bug took out my whole family. First it took out Todd and his mom, then me. I was here which was not fun. Throwing up is bad enough at home but horrific when surrounded by strangers. I was asked to go home and my dad stepped in 2 days in a row to hold down the fort. I didn't get any rest because Sully Buns caught the sickness and needed mom. My sister, nephew, and mom followed. It was epic. After 24 hours, my fever broke and life returned to normal, minus a few pounds (trying to lose 20 by July anyway so, jump off). Spencer never had it but will the C-Diff, he was in equally rough shape. His diaper rash was so bad they gave him MORPHINE. So...picture that.

After an awesome weekend with Sully and an A&P exam I actually felt super prepared for, I had to come back yesterday. I love Spencer but it's been 3 weeks and I'm over this place. More and more, I'm worried about my mental health with 4 more rounds but I'll deal with my breakdown as it happens. Trying to think positive. Made a list of Spring/Summer Awesome Activities so we can make the most of any time off we have between rounds. Trading 1 summer so we can have Spencer forever is worth it. We'll still have plenty of good times. Like I said, trying to think positive.

And speaking of time off, there's talk of us going home this week! His ANC is 60 today. They're shooting for 100 to let us go this time. If we DO go home, we'll come for a clinic visit next week and report for Round 3 the week after. It might only be a week or two but I will NOT complain. His ANC has to be 1,000 for chemo to start again so we may get more time. It's up to science. I already told Todd I want to go to Benihana, barbecue some ribs, and maybe hit the museums or something. Not wasting a second.

So things are going pretty well. We'll be 1/3 of the way done when they finally free us from this joint. I need to keep it in my mind that there WILL be an end date. This WILL end. And next spring/summer, we'll be splashing in the pool, having fun, and this will be on it's way to becoming a distant memory. We'll get through this and get on with our lives. And there will be umbrella drinks...

I'm Feeling Fishtastic: No Room In My Schedule To Be Sick

I'm 34 weeks along today...and sick as a dog. And STILL wondering exactly what that means. But we'll get to that shortly. Let's get the Monday Sullivan Report squared away. 34 weeks. 1 month and 4 days. 35 days. Soon.

Mr. Man is about the size of a small pumpkin right now. I was told at last week's ultrasound that he was around 4 pounds 9 ounces so he's right in track. He's about the size of a pineapple but I wont hold that against him! He's opening and closing his eyes and he's got finger and toenails that are ready for manicuring! If he were born today, he'd need just a little monitoring but would be fine. Still, in 2-3 weeks, I'll be full term and then won't have anything to worry about. I'd prefer to be worry free.

After recovering from all the appointments and emotions of last week, we went to Granger Danger 2, a summer party our friends Sugar and Pete's house. We got to sit outside in perfect weather, socialize with pals we haven't seen, and hear some bands with Spencer. It was totally what I needed, especially when I just got to shoot the breeze with my girlfriends, many of whom are mommies. It's funny to see how much we've changed yet how much we've stayed the same. Spencer was playing the shy game for a little while but by the end of the night, he was shaking his head like a maniac and rocking out to Lords Of The Highway. It was a great night with friends and my little family.

Looking tuff for Granger Danger.

It's tough to be a gangster.

Kickin' it with mom and feeling a little shy.

Snuggling up to Aunt Jen.

Family.

Listening to Miss Firecracker in the great outdoors.

Starting to get partied out!

Discussing jewelry with Aunt Potsie.

Sunday was a planned outing with the females of my family (and Spencer!) as it was our annual before-school tea party. But the second I got into the car, I felt horrific which caused a bad attitude. We got to the tea room and there was no AC on. I tossed my cookies (sorry Clementine's) and started to come around...plus, the air kicked on. Whew. I was able to eat...the best potato soup EVER...and enjoy my afternoon.

Sisters (and the best soup EVER).

With my niece/godchild.

34 weeks and really ready to be done.

Until we got into the car to head home, that is. Again, I was dizzy, sweating, and carsick. I had to text Todd to meet us in the driveway to grab Spencer because I was doomed. I ran in and threw up violently. VIOLENTLY. Todd, Spencer, and I crawled into the big bed and napped for houuuuuurs. I rallied just long enough to try and eat and then I was out cold again.

I felt pretty good on my way to work this morning. I just thought maybe I was overtired. But no such luck...I tossed my cookies twice at work and headed back home. I pretty much haven't left the bed all day. I should start looking for bed sores. Todd is off today so he was able to watch Spencer...and take him to pick out his glasses which will be ready in 3 weeks.
Sigh.

I feel weak and a little off. But Sullivan has been moving plenty despite the stress my body has been going through for the past 2 days. And Spencer and I got to spend a little time together listening to music in the big bed until he dozed off during "House Of The Rising Sun".

Neither Spencer nor I have any appointments or any plans this week (besides dinner Thursday night with his godmother who abandoned us to live in Columbus...pffffffft) which is fantastic. Next week it's back to 2 appointments for him and 1 for me, plus school starts! I had planned to pack my hospital bag today but got horribly ill instead so...tomorrow. There's always tomorrow!

Until there ISN'T and Sully is here!!!

7 days until school starts (Intensified Algebra).

11 days until my next OB/GYN appointment.

30 days until our 3rd wedding anniversary.

31 days until my last day at work.

35 days until the C-Section.