Thursday, May 30, 2013

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 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!

Tuesday, May 21, 2013

The Half Way Mark: A Surprise Jailbreak Brings Joy To Us All

Sorry for the lack of updates but last Wednesday we were sprung from the hospital quite unexpectedly!  So I've been wrapped up in home/family time. Round 3 was our shortest round yet at 16 days at Rainbow and when we left last Wednesday, Spencer was officially half way done with his chemotherapy. 3 rounds down and 3 to go!

I believe I was complaining that morning or the day before that going home was nowhere in sight because he still hasn't bottomed out, let alone recovered. But Wednesday morning, his ANC was 1040, platelets were 110, and his hemoglobin was up so they declared him in recovery and sent us packing! My mom was visiting so she helped us get safely favorite place to be.

I've taken the boys to a few softball games, we've shopped and hit some restaurants, but mostly we've been hanging out around here. My dad and Todd built a fence and we're planning what I call Spence and Sully's Super Garden. There has been some other outdoor projects including starting to open the pool.

It may not sound glamorous but it feels good to do normal things. And it'll feel great to have to the house and yard all squared away for summer fun, wherever we can fit it in. Today, the boys went to their sitter's for the day and I'm cleaning The Castle. There are certain things you just can't do with 2 boys getting into shenanigans, especially when the little one is already standing and climbing on everything! 

Spencer's EI Specialist said that Sully is advanced where milestones are concerned and has rad gross motor skills. It's super exciting but also hurts a smidgen since Spencer is still working on standing more and walking. His legs are strong but his trunk needs work. He'll get there! It's just fascinating to see such different boys...but man, are they crazy about each other! That's why I love having Spencer home and am going to push for him to recover here after The next round. There was no reason we had to stay there this time.

Tomorrow, Spencer has his clinic visit to check his counts and see if he is ready to start Round 4. I'm guessing he will be and I'm guessing we'll head back in on Tuesday but what do I know? This round should be similar to the last and I'm really hoping to be out for Father's Day. There has also been talk of a weekend trip to DC that I'm hoping we can participate in. Fresh air is great for Spencer and we can control who he is in contact with on a trip like this. Plus school starts back up on Tuesday and its stressful at the hospital.  But we'll see. Everything is in the doctor's hands. And SPENCER'S...and he kicked ass this round. Toughest kid I know. Toughest PERSON.

I guess I should get out of bed and get to cleaning this joint. I would like to run but it looks like rain and my body needs a break after doing my circuit 2 days in a row. I'm down 8 pounds, am eating so much better, and I'm starting to see and feel differences in my body. I still hate running/jogging but it's paying off. A few more pounds and I'll be at my wedding weight. Not too shabby!

And props to Todd for losing 14 so far!

I will fill everyone in after Spencer's appointment tomorrow. Cross your appendages that his blood work looks good and that they'll consider letting him recover at home. If the 536+ members of Team Spencer send enough positive vibes, things will HAVE to work in our favor, right?? And also, if you can send some hope that they don't decide to readmit him before the holiday weekend, that would be awesome!! Thanks in advance and thanks for being the best support system we could ask for!

Wednesday, May 15, 2013

Round 3: The Mystery Of The Unclear ANC

Maybe I should make all my post titles sound like Nancy Drew novels. It gives them a little ZING. This will not really happen but it's fun to ponder at 6:45am in your uncomfortable hospital bed with your son's foot in your face.

Spencer's ANC is driving me bananas. As I've stated before, his ANC should bottom out leaving him without a defense against infections and such, and then it should climb back up. Some times that part, the recovery, can waver going up and down before hitting a steady increase. Once the ANC continues to trend upwards, we get the boot from this place. That's the story. That's how it's been the last 2 rounds.

This round is playing out differently and more confusingly. Today is Day 15 and he hasn't hit bottom yet. In fact, his ANC has been all over the map. 690, 800, 630, 400, 1180 (!!!), 800...not even close to the big zero. This is especially annoying to me because I can't gage when he'll go home. It's usually "hit zero, come up, go home". So now what? Are we going to be here for an eternity? We've never been here for longer than 23 days in a row.

Yesterday, the docs disagreed on if he was trending up or if he was dropping. I was told that if he stayed high, even if he's wavering, they'd have to bite the bullet and send us home. And his main doc came in and said he would've let us go home for recovery in the first place but was outvoted (which broke my heart) so he agreed...if things stay as they are, we should be able to bust out of here. The next few days are crucial to they decision.

Also crucial is how GREAT he's doing. No more ass explosions, no throwing up, eating and drinking so well that he doesn't get overnight fluids anymore, no fevers or shotty vitals, and his energy is as high as ever since they filled his blood tank. There's no reason for us to be here.  They said he's making them look silly by doing so well, like he's saying, "Hey, did you guys forget to give me my chemo??"

Another plus is that a lot of kids can fall behind with milestones and progress while living in the hospital. Well his therapists said he's done phenomenally and continued to power forward!! He's putting a lot of weight on his legs, mimicking and practicing repetition, has a lengthy attention span for his age, and both added ITSY BITSY and BABY to his vocab along with signing MORE and EAT. I'm a proud mom, for sure. He won't let anything stop him. I should take a lesson in that.

I received my spring semester grades and passed my classes (for nursing students you MUST get a C or higher...none of this D = diploma garbage). I'm very happy with my grades, a little proud that I managed to live in a hospital and make it through, and am thrilled to never have to take another math class EVER in my life! Summer semester starts in 2 weeks so in getting mentally prepared. I was already accepted to Cleveland State and am waiting to hear from my other schools. Still can't believe I'll be a nurse in 2015.

I also can't believe it's only Wednesday.

Monday, May 13, 2013

Round 3: Slow and Steady Better Be Winning This Race

Today is Day #13 and I'm struggling to keep my head screwed on...and I'm not even back at the hospital! I'm in my warm bed in my dark room with a loudly purring cat and a way too heavy brain. Spencer's numbers stillllll haven't dropped yet!! They were at 400 yesterday. 400! When they finally DO bottom out, how the Hell long with it take them to come back up?? Why is it taking so damn long this time?? Even the doctors said it is slow going. The longest we've been in the hospital in a row is 23 days. I fear we're going to see that come and go this round.

On Friday, we moved from Seidman back to Rainbow. Yes, it's older and smaller and not as fancy pants but I felt better going back. It's cozy. And the kids belong there. But before we moved, Spencer had what I always refer to as an "ass explosion"...but usually I'm talking about Sully. I put him in the crib to take a shower and when I opened the bathroom door, the room...oh boy, there was such a smell. His crib was covered in poo. Crib, toys, bedding, wall, floor...he was just stuck in the middle of a disaster. I didn't even know where to begin remedying this situation. I would've laughed if it wasn't so overwhelming.

So it turns out Spencer has C-Diff again. Just a reminder that this is the most common cause of diarrhea in the hospital. We all have C-Diff in out GI tract but being in the hospital upsets your natural flora and boom, ass explosion. It's most common in the immuno-compromised and the elderly. It's not great for Spence because we don't want him dehydrated. Luckily, he only has that one explosion and his antibiotics (which are both a cause and cure of C-Diff) will only be for a week rather than weeks and weeks like last time.

They've cut his fluids in half over night. This is probably for one of two reasons (I wasn't there when the call was made). Either he's drinking well enough to not need so much hydration or they think he's getting too full from the fluids and are trying to help his appetite. Either way, it's less time hooked up and more freedom. Though because of the C-Diff, he can't leave his room. Not that we're very social there anyway.

I'm not going to lie, and this really isn't news, but I hate being there. Besides any sweet moments I share with Spencer, I'm flat out miserable. I want our life back. I cried the entire way home on Saturday and then some, even though I was beyond thrilled to see Porkchop. He's getting so big and blowing milestones out of the water and I'm missing it (speaking of milestones, Spencer is making great strides according to Speech Therapy, adding Baby and Itsy Bitsy to his vocab and signing both More and Eat).

Yesterday was Mother's Day and I tried to make the best of not having my babies together. My dad came over early and the laundry room is officially done! And ANAZING. Then my niece and I went and bought new jammies for Spencer who is getting longer...his little belly is always hanging out at the hospital...and summer clothes for my lonnnnnnnng and solid baby boy. Then we stuffed our faces at the Melting Pot and got plants/flowers/patio chairs for the yard. Tradition. 

Sully made me a craft as Spencer did last year and I got a really beautiful note from Todd (along with some Blue Moon and a few Mother's Day raps, but that's another story). I also received some really sweet messages on Facebook that warmed my cold, black heart. Messages like these make you think you're actually doing an OK job and not failing as miserably as you feel. I've always tried to be honest about my family's current situation. I don't sugar-coat it and then I worry that I'm behaving selfishly or weakly sometimes, but I guess I'm doing OK! The people that matter to me think so anyway.

And the people who matter most are Spencer and Sullivan. I love them more than anything and anyone. They are the loves of my life, hands down. For whatever reason, I was lucky enough to be their mom. I wouldn't get to celebrate Mother's Day without them. And every day that I'm with them, I say, "I love you...every day of your life". If I'm not with them, I think it. They are what matters. They are my world and my purpose and as the corny saying goes, they are the only people who know what my heartbeat sounds like from the inside.

The only downside besides being short one son and a husband was that my baby seems to be sick. He was fussy for my parents at night while sleeping at their house and has some alienesque green slime pouring out of his face. He's sluggish and out of sorts. Hoping its related to teething and not something worse. He had a rough night and I'm hoping to stay with him today unless he drastically improves. Not because its one more night away from the hospital but I feel guilty enough missing so much Sully time...he needs his mom when he's sick.

As a really vain and unimportant closing, I'm down 7.5 pounds which is surprising as I felt sort if dumpy this week. I haven't gotten to run and I MISS IT. Haven't even gotten to walk because its cold (thank you, Ohio for being freezing during my free time) and I don't want to subject my little sicko to the elements. I have 2 months to meet my goal of losing 20 pounds and it seems more than doable if I keep being smart.

Anyway, if you have free fingers, keep them crossed that Spencer's drop and recovery speed up. I need my family to be together at home. It's no longer a want. It's a NEED. And I NEED to go get Sully out if his crib. My Buddha is singing for me!!!

Wednesday, May 8, 2013

Round 3: Another Punch In The Gut and a String Of Long Days

The doctors told Todd on Saturday that Spencer can not recover at home. He has to stay in the hospital while his numbers drop and recover. I knew this was most likely how it was going to go so I'm not sure why I talked myself into anything else. I got my hopes up and they were crushed. I'm not one of those people that believe in PMA anymore. It never works for me. I delegate the PMA to Phoebe. She has to be hopeful on my behalf until I feel less defeated.

Today is day #8 and his ANC is about 750. It has to hit rock bottom and then come back up (recover) to about 220 before they'll let us go home. I'm predicting, in my capacity as a doctor, another 2 weeks.

I'm also predicting a lot of tears cause I'm going batshit crazy here. I miss having my sons together, I miss my husband, I miss my house, real food, running (bet you never thought you'd hear me say that, am I right?). School is out for a few weeks so I don't have homework and studying to keep me busy. I finished my finals yesterday, thanks to a lot of extra support from my parents. I've already read 2 of the Game Of Thrones books for a whopping total of 1,504 pages. I play with Spencer a lot but he's also tired and very independent. He likes to do his own thing while having you close the time is harder to fill and the days are long. I've watched Wreck-It Ralph 3.5 times in 2 days.

They days also looks beautiful and sunny through our window which doesn't help.

I would never survive in jail cause this place is like a palace and I feel trapped.

One thing that's killing me especially slowly is Mother's Day. Some people say it's just a day but I had a GREAT Mother's Day last year. Fantastic Todd set the bar high. And this year, I won't even have both of my babies together. Not that I won't have an amazing day with Sully. It just won't be the same, waking up without Spencer and Todd there. I guess I should be grateful that I'll be at home and not here. Any little break makes such a difference. Even the one extra night I got to sleep in my bed this week was a blessing. But I woke up under my black rain cloud today. Kicking rocks and crossing my arms in a huff.

I've always counted us so lucky that Spencer doesn't behave like a sick kid, never has. He's just his same old sweet, adorable little guy, even if he does throw up here and there and can't get too far since he's hooked up to the IV at times. But this round is knocking his socks off a bit. The actual chemo stopped running on Sunday but he's wiped out. Lots and lots of lonnnnnng naps. And lots of time in mom's lap. It's hard to see my active little guy so beat. We're all beat. AN being beat makes us beat up on each other. And while I may see Sully on the weekends (which is NEVER enough time), I NEVER see Todd. He said yesterday that it hurts and it's true.

But once we get home, we're half way done. There WILL be an end to all of this!

That's basically the scoop. Things have been a little on the boring side this round as far as actual medical events. But boring is good. The PICC line has been working like a dream, there is no evidence of abnormal cells in his bone marrow or spinal fluid, and he hasn't had any fevers. A fever is what will keep us here longer than we need to be and my brain doesn't need to be here ANY LONGER. I'm already planning a type of Pool Party/Open House for when he's home for his next break. I want to celebrate "half way done".

Outside of hospital life, and life with my little red headed Porkchop (who I screwed AGAIN by not posting about his 7 month birthday), I guess I'd say I'm a little boring. I did get out to see Jimbo and Joe's last gig with Lords of the Highway. And there are some fun events like the Slick Devils car show at the drive-in coming up. But nothing will be as fun as when he's out of the joint. I can't say that enough.

Thursday, May 2, 2013

Round 3: Here We Go Yet Again

After 12 amazing days at home, we're back in the hospital for Round 3 of Spencer's chemo. We'll probably be here 3 weeks or so though recovering at home is still an "open discussion". I have my fingers crossed for that every day. Home is where he belongs. He eats better, drinks better, sleeps better...he doesn't throw up, doesn't fuss...home is where it's at and a few weeks at home would be a blessing.

We made every minute of our home time count, just like I swore we would. We went to the history and art museums, Dave and Busters, to the park a bunch (I'm on week 2 of the Couch To 5K program. Got new running shoes as an early Mother's Day gift and am down 5.5 pounds), had Japanese food, watched movies, and just LIVED. Besides shaving Spencer's head, flushing his lines, and giving his meds, the hospital and all the garbage was so very far from my thoughts.

There's really not too much to say at the moment. Spencer received chemo in his spinal fluid and when the tap came back, there were no abnormal cells in it. Great news. That was the last time he'll receive that type of chemo. He's hooked up and the liquid will run until Sunday night and he also gets oral chemo twice a day until then. I'm hoping for a nice boring stay for as long as we're stuck here. Hopefully it won't be for too long.

The issues they have with letting us go involve infection. If anything happens, they want to treat it within half an hour. And if he gets mouth sores and doesn't eat or drink, they can take care of it while we couldn't. But we know what to look for and we would come to clinic once a week while he's in recovery. Home is much safer for him than the hospital. It's just a fact. And he could get so much fresh air. I'm trying not to get my hopes up but...they're up. I want to be together for Mother's Day, even if that's selfish.

But for now, we wait.

Cross your fingers that we can bust out of here soon and be 1/2 way done!