Tuesday, November 27, 2012

Getting To Know You: You're 2 Months Old

Happy 2 Months, Sullivan! I'm a few days late in writing this post but I did get your monthly birthday pictures right on time! You are really coming into your own, bursting with personality like your big brother, Spencer. I truly can't get enough of you. In fact, you're next to me as I type this doing some adorable little dance in your adorable striped jammies. It's distracting in the best way. I have 6 weeks at home to spend with you and while it still sounds like a long time, it's not. It's not enough. But I'll (sadly) babble about that another time. This is about YOU!

And this is what I've learned about you in 2 months:

- You have started to laugh A LOT. You are a happy guy, laughing, smiling, dancing, and saying, "Ohhhhhhhhh", which Spencer tries to imitate. Sometimes you have a cute, squeaky baby laugh and sometimes you have this horrible, deep chuckle (huh huh huh) which you get from me. Either way...you're just a happy little dude and you're testing your pipes.

- Grandma calls you "Party Boy" because whenever she sees you, you're snoozing.

- You're so STIFF! Even in your swing. The only time you loosen up is when you're totally out cold. I wonder if I can get you a baby massage. Your daddy compared you to a 2x4 the other day and I don't want that to be your legacy.

- None of your baby hair has fallen out. You have a ton and it seems to be getting redder. People go nuts over your chicken hair.

- You're holding your head up more steadily and for longer periods of time. You don't dig tummy time very much but we're working on it.

- Even though you're only 2 months old, you look...older. You don't look much like a baby-baby at times. But being so big and sturdy, I guess you never did, my little pot roast. But you're so flipping adorable, I can't get enough! I wondered for 40 weeks what you'd look like and I could just smoosh you. More people are saying you look like me and my family, even Grandma Mary.

- Every time I think you're getting closer to sleeping through the night, you go back to a nutty schedule so you're still in a bassinet in our room. I know I should suck it up and put you in your crib but that makes me sad. Hormones.

- Your grip is super strong. And I swear you purposefully try to touch me sometimes when I'm holding you. I think you'll be rolling over, sitting up, crawling before I know it (don't grow up too fast!!!).

- You don't mind the bath anymore but you HATE getting naked. Your diaper comes off and you let out a terrrrribly shrill shriek and it makes Spencer scream!

- The fox is your totem because I kept noticing them while I was pregnant. But as I get to know you, how you fit with your brother and in this family, I think it's fitting:

adaptability, cleverness, wisdom, desire, intensity, expression, focus, determination, right-action.

I love you more than you could possibly know, my little red fox! I'm so lucky to have you and CAN'T WAIT for the Christmas season with my 2 awesome buddies. I hope I'm doing alright by you! Believe me when I tell you everything I do is to give you the best life possible. You deserve it. You're AWESOME!

Thursday, November 22, 2012

Thanksgiving: Gobble 'Til You Wobble

Today has been an incredibly successful Turkey Day and I couldn't be happier. Both of my boys, for whom I am MOST thankful, were total gems and they are so loved. I felt content, at ease, and not one bit anxious, even when we talked about Spencer's Oncology clinic appointment from yesterday...details on that after the weekend when his blood test results are in. Once again, I didn't eat as much as I may have wanted but there are leftovers in the fridge which I will inhale when I watch Hunger Games tomorrow. I'm on such a movie kick again. But that's neither here nor there.

Before he went to bed (poor guy has to get up at 3:00am for work), Todd wished me a Happy Thanksgiving and thanked me for his boys. I thanked him for the same. I'm thankful for countless number of things like my friends, family, home, and all the basic good stuff, but I could not live without Spencer and Sullivan. They are what I'm most thankful for this year. That I'm lucky enough to be their mom, that they have each other, and that they're both happy and HEALTHY little boys. Spencer doesn't have Leukemia and Sully came into the world without hiccups. Life is good.

So Happy Thanksgiving to everyone I care about and, what the Hell, to everyone I don't. I hope you had an awesome, laid back holiday like we did. I'm fairly certain gravy is currently coursing through my veins and I'm more than OK with that. With Halloween and Turkey Day under our belts, it's time to get ready for Christmas. The lights are on the house, the tree is going up tomorrow, my shopping is ALMOST done, and I'm ready to celebrate another holiday with my awesome boys! Sometimes growing up isn't too bad.

Remind me I said that when I have 3 classes next semester.

Monday, November 19, 2012

Back Down To Earth: Adrenaline Slowly Subsides

It's been a week since I blogged which is typically unheard of. Its not like I haven't had anything to say. I guess I've been hiding out. I'll be honest, things have been weird since we found out that Spencer doesn't have Leukemia (still loving the sound of that). We were so prepared for bad news and my adrenaline was so sky high that I've had a little trouble getting back to normal, whatever that is. Normal.

Phoebe told me that once all the commotion of her own cancer experience had leveled out...when there were no appointments, tests, results to wait for, etc...THAT is when anxiety took over. That's where I'm at. I still haven't filled my prescription but I'm thinking it's time I should. I'm feeling much better than I was last week but I still feel slightly ill. A lot happened and it happened fast. When it has to do with your child being in danger, yeah, it puts you through the ringer, body and soul.

I thought I would wake up Wednesday morning and everything would be great. Spencer would kick it with his pals at the sitter, Sully and I would lay low and get the bonding time I was so afraid of losing, and we could all just relax. But it didn't work out that way. Yes, Spencer had a fantastic day at the sitter's. Yes, Sully and I got to bond. But there was still a black cloud. A panic I couldn't shake. I felt like I should have been at some appointment or that I was waiting for some news. But after two horrific weeks, it was kind of over. Just like that.

But then again, it's NOT over. We don't know why the blasts are in his blood or why he has this abnormality. But no one is especially worried. We go to the clinic on Wednesday for our first follow-up blood draw and to discuss the results of the genetic screen (if they're in, maybe it's a generic abnormality). We'll also plan out how frequently he should be seen now as he's still at risk to develop Leukemia. We were sooooo close to going every 16 weeks. Le sigh.

Also giving me great anxiety is going back to work. I know I'm not going back until after the new year and don't get me wrong, I like my job and greatly appreciate it. But I am dreading going back. DREADING IT. But Todd and I discussed my school plan and said plan had me working another year so we can squirrel away extra money, tax returns, vacation pay, bonuses, in order to help when I'm not working for 12 months. I made the decision to take Kent State's pre-requisites (at Tri-C) and transfer into their Nursing program in Spring 2014. So until then, I'll be working and I'm dreading that because I don't want to leave my boys. But I don't want to obsessively think about that and waste the rest of my leave. I could cry thinking about it but I've don enough crying recently.

We have managed to have some good times lately. Going to lunch, having movie nights, kicking it with our awesome kids, getting ready for the holidays. Here and there, there have been mellow moments, we just need more of them. What we DON'T need is another episode like last night. Spencer was screammmmming out of nowhere and it sounded like he was hurt. But he was in my arms and it was pretty random. Then he just went limp!!! I gave him a little jiggle and he was alert again but I was FREAKING OUT. Todd thinks he screamed so much that he hyperventilated but it was TERRIFYING and I'll be bringing it up to his docs tomorrow. Poor guy.

So that's where we're at. Coasting, but not...

Wednesday, November 14, 2012

Results Are In: The Best News, The Best Feeling

I waiting for Spencer's results all day yesterday. My hand was cramping from holding the phone and my adrenaline was so high, I felt like I could erupt at any moment. I tried to keep as busy as I could to distract myself...doing laundry, cleaning, playing with the boys, getting ready for the Baptism...but the call never came. I just kept waiting and fearing the worst. Sully's special day was going to be ruined by a very distracted mother.

I took a shower and was starting to get the boys in their suits when FINALLY the phone rang, but I was worried it was the Sedation Unit who said they would call to check on Spencer. It was his doctor. She was glad to hear that he was totally himself after the procedure and never needed Tylenol, so tuff. Then she told us she had GOOD news and from that point on, I couldn't keep the smile, shocked and awkward as it was, off my face.

All of his blood tests were similar to how they have been. Numbers are lower but not dangerous. While there were still blasts in his blood and I BELIEVE in the bone marrow, and there was some type of abnormality somewhere...in the platelets maybe...there were no signs of Leukemia. He does NOT have Leukemia. I truly can't believe it. I expected the worst. Lots of people did because it seemed we were being prepared for it. But he's one of those rare occasions we were told about. I think somehow he made this happen. He can't be stopped!

He will have to be monitored as we do need to find out what this abnormality is. They've sent samples out for generic testing as maybe it's a generic condition. It also may be leftover blasts that showed up from his pre-Leukemic condition. At this point, we just don't know, but we'll find out. The important part is he is not in any danger. They've always commented on how healthy he is and looks and acts. He's STILL never had a fever. They feel so confident that we don't need to go back to the clinic until next Wednesday. And I don't mind going. They're just looking out for him.

Everyone under the SUN was looking out for him. If you're having a crisis, you want my family and friends. And my friends' friends and family. We had the best support we could ask for and it all came so naturally. You need support and people have open arms and hearts. It was overwhelmingly awesome. And I even got my liquor and baked goods I joked about: cotton candy flavored vodka and pumpkin scones! People are awesome!

And Sully is awesome. Since we got good news, we were able to focus on Sully and enjoy his Baptism. He was the star of the show, but he shared the spotlight with his brother. He looked so handsome in his suit and did great during the ceremony, even if he was uber-gassy, like his dad. He had an ass explosion earlier in the day that was epic. When we got to my mom's house, Spencer was a little overwhelmed but eventually came around. And I actually got to mingle and eat and enjoy my little boy's celebration. I am thrilled about that.

I'm thrilled that Spencer isn't sick, we don't have to move into the hospital, he won't need chemo, I won't be separated from Sully, my bonding time with him won't be interrupted, I won't have to drop out of school...I'm just thrilled, period. I guess sometimes when you do expect the worst but hope for the best, it actually works out! We hoped for the best and got THE BEST. And now I'm overflowing with good vibes! So if you need something, you call on me. I've got an unmeasurable amount of kindness to pay back. Maybe that will be my goal for 2013!

A new "Blog In Pictures" will be coming soon since I haven't posted many lately but here's a shot if Sullivan getting dolled up for his big church debut! I love you, Sully. You truly have made our family complete!!

Monday, November 12, 2012

Emotions In Check: Bone Marrow Biopsy Day

Spencer's bone marrow biopsy is this afternoon so I figured I would record the day in pieces, rather than try and remember everything that happened and how I felt throughout the day. I'm currently sitting in bed by myself, emptying the milk jugs, and getting ready to shower. Todd is feeding Spencer (Jello and apple juice = clear liquids) and Sully is snoozing. Both boys are sweet and happy. It would appear like any other day from the outside.

Let me preface all the blogging by saying I HATE TODAY. Loathe it. We should NOT be here. Spencer does NOT need this garbage. But at least once the test is over, we'll know if he has Leukemia or not and can move forward. It's kind of easy to say that though. If he DOES have Leukemia, I can act like I'll be strong enough to handle it all NOW. It will most likely be a different story once I hear the words for sure. I'm guessing there will be lots of tears and I won't be nearly as tuff as I'd like to be. Maybe I should enjoy this moment. Right now, there is no bad news. In an hour and a half, we'll be on our way downtown and there will be no turning back.


I thought I would have far more little breaks to tell the tale of today's adventure, like when we were in the waiting room...but we never were. We stayed during the entire procedure which I really didn't think would be an option. I witnessed a bone marrow biopsy first hand, and only cried a little. Todd might have gotten misty-eyed, too. We checked in, came to the sedation unit, they put his IV in, sedated him, and did the procedure. There was no down time at all. The doctor who did the sedating said Spencer did much better than he expected. Now I'm sitting at his bedside, waiting for him to wake up. Then he can eat and we can get the Hell out of here.

We should know the results by early afternoon tomorrow. And when we know, everyone will know. We're all in this together now. And I can't stress enough how much everyone's support today meant. Family, friends, friends of friends, strangers...people rallied. It was heart-warming. He'll need a good team if the outcome is bad and he has it in spades. It's really amazing how people come together when you need them. Spencer is one loved little boy.

And he might be waking up now...

Saturday, November 10, 2012

An Update: Volume Three

Friday was a jam-packed day and somehow, I still feel like I'm recovering, simple as the tasks may have been. I have a feeling I'm going to feel like I'm "recovering" for quite awhile. I'm trying to dial my emotions back a little. Have to keep my shit together for my family. There's no time to crumble right now.

After both boys were diapered, fed, and dressed, I dropped Sully at my mom's ( thank Buddha for her) and took Spencer for some pre-biopsy blood work. This was an activity that is making Monday and our reality all too real. They got it on the first try and a courier rushed it to the hospital for results. My doctor had already called once to see if we had been there. This made me nervous like...is something going on? Is he in worse shape than they're saying? Why do they want his numbers so badly??

Later while I was at my 6-week OB/GYN appointment, the doc called and said Spencer's labs look stable so we can go ahead with the biopsy Monday at 3:00 as scheduled. Lucky us. From the time he wakes up until after his procedure, he can only have clear liquids. That's a lonnnnnnng time without solids or milk. Poor guy. But it's scheduled. Soon we will know and can move on with whatever will happen next. Had to do some planning already for something we aren't even 100% sure of. Not fun. Painful. Robotic.

I had a little breakdown putting him to bed. This sucks.

Anyway, my appointment was good, typical. I'm a few pounds under my pre-pregnancy weight, BP was good, my incision was healing nicely, and my uterus had shrunk back down. I inquired about meds to help with any anxiety that may come up during Spencer's (possible) treatment and she totally understood. I haven't filled it but it's there. Drugs like that cross the milk barrier so you have to be somewhat careful. A little wont hurt Sully but I don't want to hurt him at all. I'm hoping to be strong enough to not need them but if my 15 month old has chemo...

The last appointment of the day was Spencer's check-up at the pediatrician. He was supposed to get his chicken pox vaccine but none of those until we're through this whole mess. Live viruses are a bad idea right now. Just another reminder of what we're going through.

I was going to talk about how much I think Sully is getting screwed during this ordeal but I can't think about it or I'll cry. Poor little dude. This is HIS time. He's my last baby and I feel like I'm missing out on him being little...or that I will miss out. He's already such a big boy, my little pork chop. Big boy, little pork chop...how contradictory! But you get what I'm saying. He's growing so fast! I just adore him.

The Food Show at the IX Center is my first big adult outing sans babies. Maybe I should be at home with the boys since we'll be in the hospital for who knows how long Monday. But I need this. I need to have a little fun with friends. I need to turn my brain off just for a little while, and I'm going to do it while stuffing my face...as much as one CAN stuff their face with sample sized food! It will be good medicine.

If I don't update y'all after the procedure, I will after Sully's baptism. Thanks again for the support I'm getting here, on Facebook, and through private message. We have a great team backing us up!

Spencer will beat this. He's too awesome not to.

Tuesday, November 6, 2012

An Update: Volume Two

Yesterday, as once again I'm blogging after midnight, we went to the Hematology/Oncology clinic to start getting to the bottom of Spencer's abnormal cells. They managed to draw his blood on the first shot and my little trooper didn't even cry. It was sent off to the lab and we talked about a few things to get our heads in the right place. Most important topics:

1. The bone marrow biopsy isn't as invasive as with adults. He'd be sedated for the procedure and most kids are up and running around (or their normal selves as Spencer isn't that mobile yet) right after. They've never prescribed anything for pain, just Tylenol, as the kids don't complain or pain, just soreness. Still a nightmare, but a less gory one for mommy.

2. The treatment, should he have Leukemia, is chemotherapy and would be in-patient. That's all I know. No point in discussing it until we have to.

3. Kids under 4 and kids who have had the pre-Leukemic condition he did tend to be more successful at fighting the Leukemia. Their success rate for a cure with treatment is extremely high.

Another important thing we learned is that his blood work this week is very similar to last week's. And all the bonus tests they threw in...kidney and liver function, plus a bunch of other stuff I can't recall...were normal. The problem is that the blasts are still there, and while nothing had gotten worse, it hasn't gotten better.

This means a bone marrow biopsy on Monday.

This is the scariest thing I've ever gone through. I thought finding out about Spencer's developmental issues was bad (and it WAS) but now we're talking about an invasive procedure that will tell me if my 15 month old has Acute Leukemia. We're talking about cancer. The developmental issues were/are heart breaking but they weren't potentially fatal! I remember in the NICU over a year ago, Todd said he just didn't want him to be sick.

IIIIIIIIIII feel sick.

And I feel horrible for both my boys. Spencer because he has to go through things he doesn't understand that some adults can't even handle. Things I've never gone through and can't take away for him. And Sully because this is HIS time. This time is supposed to be about bonding with him and learning about him and showering him in attention. Now his brother might be sick and the rest of my maternity leave might be really focused on Spencer. It's not fair to him. None of this is fair to anyone. I'll do my best to make sure he remains the center of his Baptism on Tuesday. That's HIS moment. People can ask me about Spencer another day.

So Friday I have to take Spencer for another blood draw but at least that's local. Friday is a busy day. There's the blood draw in the morning and his next Pediatrician appointment in the afternoon. Sandwiched in there, I have my 6 week check-up at the OB/GYN. I'm STILL spotting and STILL in pain, don't feel like I really bounced back, so we'll see. I'm going to talk to my doc about Xanax to help me get through this garbage with Spencer. That'll make me feel like Mom-Of-The-Year, but I need to be able to keep my shit together for my family. And my family has been awesome, giving up time and rearranging schedules. Everyone rallies when it's important.

More updates as things progress.

I'm going to age a predicted 25 years through this.

Feel free to leave Patrone, funny flavored vodkas, and baked goods on my doorstep! See? I still have my sense if humor (I'm only partially kidding).

Sunday, November 4, 2012

An Update: Volume One

One of Spencer's doctors from the Oncology clinic called Friday night to discuss that lengthier test they were running on his blood sample. I wasn't sure what it was looking for exactly but the doc told me it did confirm that there ARE blasts in the sample. She said the blasts are 2%, which is low. But they're there. It wasn't the fluke I was hoping for.

What we don't know is WHY they are there, not yet anyway. She said that in rare occasions the blasts just disappear. But she had to look that up in some literature which makes me think its not something they see often in the clinic. If that's not the case, we're looking at Leukemia. I could seriously just throw up.

For the next few weeks (unless we see something definitive sooner or immediately), I'll be back in the clinic taking Spencer for blood draws. We have to establish a patter of decreasing or increasing numbers in order to decide if the bone marrow biopsy is necessary. They don't want to do that until they are sure it's the best course of action. It involves sedation and has its own set of risks. On one hand, I HATE that. On the other, it would tell us if he has Leukemia flat out. Part of me just wants to KNOW so we can move forward, even if it means a biopsy.

Sometimes I feel totally fine, like nothing is going on. It's just another day and the baby is playing in his gym and I'm taking video of Spencer dancing like a nut to funny 80s songs. Then there are moments where I'm just sobbing, like in my car on the way home from Target, listening to "You'd Better Be Home Soon" by Crowded House. I'm sure the post-pregnancy hormones aren't helping any. If you'd look at Spencer, he looks FINE! He's his nutty self, per usual. But I know those disgusting cells are in there.

Tomorrow is our first visit, of sorts, to the clinic. They wanted us to come in Wednesday in order to give enough time for something to change in our favor or not...just something that will officially tell us what's what. But I think they knew I couldn't wait. I KNOW those stupid blasts are in there and to me, it's like he's being poisoned. We just need to get on this. I'll keep everyone posted through this. I know there are a lot of people on Team Spencer.

And if anyone cares, the Leukemia ribbon is orange.

"Don't listen to a word I say. The screams all sound the same. But though the truth may vary, this ship will carry our bodies safe to shore" - Of Monsters and Men

Friday, November 2, 2012

The Phone Call: It's Going To Be a Long Week

The phone call I have dreaded, but never really expected to receive, came last night as I was cooking dinner.

Spencer had his Oncology clinic visit on Wednesday and while everything initially looked good (and he, himself, seemed great), the blood smear isn't read for abnormal cells/blasts until the next day. So we got to enjoy our Halloween and then everything fell apart yesterday.

His doc told me that his white blood cell count had dropped a little but that could've been from the clots that ended up on the slide. But one thing that wasn't from the clots was the presence of blasts in his blood. Yep, the abnormal cells are back. I'm not sure for certain what this means besides the fact that it CAN'T be the pre-Leukemic condition that he had. Once that resolves, it's gone.

I have to bring Spencer back into the clinic next Wednesday for more tests. Just another blood draw for now. But while we're there, they will determine if he needs to have a bone marrow biopsy. This is terrifying to me for 2 reasons:

1. I'm fairly certain they get the bone marrow sample from the hip or sternum and that it's extremely painful for adults, let alone 15 month old boys. Thinking about them doing this to my baby makes me physically ill.

2. If they're considering looking at the bone marrow, they're looking for Leukemia. I knew he'd be at risk to get full-blown acute Leukemia but I never thought it would really happen. He's been dealt such a junky card, I just hoped he'd catch a break.

Now of course, they may not even need to do the biopsy. But with the appearance of the blasts...I mean, the fact that they're back is NOT good. You Google "blasts" and all sorts of Leukemia stuff pops up. I don't think (but I don't KNOW) that they can signify anything else. I guess I'll find out on Wednesday. Todd's birthday. 2 years in a row he had a dramatic birthday. Last year, I had surgery to remove a kidney stone, and now this. This is FAR more painful to me.

All of my friends and family, those who know since we only found out 12 hours ago, have been very supportive. They've offered support, thoughts, prayers, vibes, blood products, and bone marrow! While I don't want to get ahead of ourselves, it's nice to have that safety net. And it's also semi-comforting to know that Sully's cord blood is hanging out in Phoenix just in case we ever needed it. Looks like that possibility just became more real.

I wish I knew more and could share more with you but I don't. He is my best pal, the love of my life, and I'm supposed to protect him from hurt. I've had a LOT of friends deal with cancer but with the exception of 1 awesome little dude, they were all adults, better capable of understanding what was happening. And it was difficult and heartbreaking and painful for THEM. If it turns out to be Leukemia...he's not even a year and a half OLD! How can he understand any of this? I don't even understand. All I understand, and I understand it well, is that his pre-Leukemic condition was associated with his other condition and we did that to him. We decided to have a baby and at conception, his genes were what they are. We did this to him.

The doctor is supposed to call today or Monday because they're running a lengthier scan on the blood they took from him this week. But I can't remember what they're looking for...I think it had to do with the white blood cells. Nothing that would help explain the blasts. She brought up the bone marrow biopsy more than once and apologized for calling with "such bad news" twice.

This is bad news.