Thursday, January 31, 2013

Bad News: What We've Been Dreading

Last night, we got the phone call we've been dreading but expecting. Spencer's blast count is up to 20%. A 25% count would be an automatic diagnosis of Leukemia. His numbers have been consistently moving upward so while it's not at the definitive mark, it's on it's way. Even if the percentage is below 25%, it can still be Leukemia, it's just that the magic number of 25% flat out declares that it can be nothing else. Without some miraculous drop in blasts, it's Leukemia. If we give it a little more time, it's going to cross the line. We all know this.

Unfortunately, we're back in a Limbo of sorts. His doctors need to discuss the situation and get back to us (today or tomorrow). Then we will probably all sit down together to discuss the option. As of now, it looks like the options are to start the chemo or wait a few days/weeks to see if that miracle drop happens. And seeing as his doctor needed to look at some literature, I'm guessing they don't see that happen enough if ever.

If that DID happen, it would mean this is just a recurrence of the pre-Leukemic condition he had at birth. However, it's been 3 months since the abnormal cells were found (and they could've been there before that but our appointments were 3 months apart at that point) and this condition would start to resolve itself by now. We would've seen blasts start to decrease and the other healthy cells to increase. That's not happening. It's not going to happen. I'm not being a pessimist, we just know this.

We've been reassured that waiting a few days/weeks would not change the course of treatment and would not affect the success rate. While this chemo isn't super ultra hardcore, it's still chemo. It's like when people say you have a "good" kind of cancer. It's still cancer! So we don't want to subject him to chemo until we're POSITIVE that there's no chance that these abnormal cells will decrease.

All along, the doctors have refused to discuss anything about the treatment with us because there was no reason to. Now there's a reason to and we're starting to discuss it. Because Rainbow is such a wonderful hospital, Spencer's results/case are going to be bounced around to several different doctors, included one the top dogs regarding Leukemia in the country. It's comforting to know they care enough about my son to have the very best people involved. I would stand for nothing less.

I could go into a lot of the emotions I'm feeling and rant about how there are certain people I know who are AWFUL people/parents and just seem to coast through life and how unfair it is. Or how Spencer being admitted to the hospital is going to be so hard on me, Todd, and poor Sully. But right now, I'm just focusing on the medical part of it all and the the facts. If I give into my emotions right now, it's going to be too much to handle. I have to keep my head together.

But last night I cried in the shower for the first time in a long time. The streak is over...

Wednesday, January 30, 2013

A Total and Utter Wreck: Spencer's 2nd Bone Marrow Biopsy

Spencer's 2nd bone marrow biopsy was Monday afternoon so I barely slept at all the night before and was up frantically cleaning at the crack of dawn. I needed to occupy my brain. We headed downtown around noon, with our guy in brand new shark pajamas, to get the ball rolling. He finally broke the 20 pound mark which really excited me. All of the pre-biopsy shtuff was identical to last time, though our patient didn't have to wear a gown and was a little more crabby and squirmy. I'd be crabby and squirmy, too, if I didn't get to eat for that long.

Once the procedure got started, there were a few little things that made my skin crawl. I REALLY watched this time so that made it more intense. And once they got going, he was still moving some and making little noises. No one seemed concerned but it sure freaked us out. And when they went in to retrieve the bone chip...which I didn't think they were going to do...they had a hard time getting it. Kept reinserting that corkscrew thing into his puncture wound which made ME hurt, so poor Spence!

He slowly but surely woke up from sedation but was definitely more spacey this time. The nurse said she didn't know why but all the kids that day just wanted to keep on snoozing. So snooze he did the whole way home. He was a little quieter and moved a little slower and at bed time, he did not want to lay down. He just sat up in our bed with his eyes half open. I don't know if it was more comfortable or what but eventually, he got very close to me and put his head on my shoulder and fell asleep. It was an extra awesome snuggle, indeed.

I decided to stay home with him yesterday. Not the best idea financially but I was concerned about him and he (and Sully) trump anything else in my life. And let's be honest, I was also a wreck waiting for the results. Well, after some moody moments throughout the day from Spencer, he was back to his old self, but the results never came. We got a phone call around 7:00p from the doc saying she had no news yet, aside from the blast count being pretty much the same or slightly higher. She apologized up and down but we won't know anything until today.

And she said not to count on it being any earlier that noon...MAYBE.

Another day of not knowing what's what with my son is enough to drive me mad. But at least the procedure is over and he's back to being the guy I know and love, just with a tiny little bandage on his hip. I'm hoping for the best but expecting the worst. Then when I'm surprised, it will feel that much more awesome.

Stay tuned...

Saturday, January 26, 2013

Getting To Know You: You're 4 Months Old!

Yes, I'm late again since Sullivan turned 4 months on Thursday but I wanted to wait until his check-up at the Pediatrician so I'd have all kinds of fun! Facts about the little guy who steals more of my heart every day!

Sullivan is 14 pounds 4 ounces (50th percentile) and 26.26" (90th percentile). He's a tall dude! And already in 6 month clothes because he's so lengthy. Everything about him looks great. He had 3 vaccines and handled them like a champ, and can now have cereal, which will hopefully help him sleep longer through the night.

Sometimes the stretch is 6 or 7 hours but lately, it's been more like 3 or 4. He's been in his crib for a few weeks but I just put his basinet away today. It stung...he's not an infant anymore. After cereal, he can have fruits, veggies, and before you know it, he'll be in college. I can't blink. And if I can't blink, I guess it doesn't matter if I get sleep!

Sully is the happiest baby. Always laughing and cooing and happy to see me. I love cuddling with my little red head, especially how that he's a little less stiff and more smooshable. He's doing everything a 4 month old should: laughing and smiling, rolling over (both ways), reaching and grasping...and holding on TIGHT, especially with mommy's hair..., holding his head up with total control (but he pretty much has been since birth), and moving about. You put him to bed or in the gym one way and that is NOT where he is when you take him out. He's a wiggly worm!!

He likes to play with links (and his brother likes to take those links away) and rattles. He also dances like crazy but he seems more into bright, flashing lights than music right now. He's really trying out new facial expressions and sounds...and a lot of those sounds are still coming from his buns! He's a gas MACHINE. But I love this guy like crazy. He's such a good little brother and just a sweet, laid back little man. I'm so lucky to have him and can't imagine my life without him.

He turns my bad days right again. He owns me.

Happy 4 Months, Tank!

Wednesday, January 23, 2013

In Preparation: Yesterday's Phone Calls

Yesterday I spoke to the Pediatric Sedation Unit regarding Spencer's procedure on Monday. All the information was the same since he's having the same procedure at the same place on the same day of the week at the same time. No solid food or milk after 7:00am. He can have water, apple juice, Pedialite, popsicles, and Jello until 1:00. Poor kid. How do you explain to a hungry 17 month old that he can't eat? Jello doesn't exactly fill you up.

We need to be check in, get our visitor's passes, and be in the Unit by 1:30 for his 3:00 procedure. They'll get him in a gown (every time he's in a gown, it has little tigers on it), start an IV, draw some blood, and then we wait until it's time. The anesthesiologist will shoot something into his IV and it will look just like he's dosing. That's the part that kills me...watching him drift off.

They roll him on his side with his buns towards us, undo his diaper, and put that yellowish-brown junk that stains everything on his back by his hip. Why can't I think of what that stuff is called?? I keep thinking Peroxide but I know that's wrong. Betadine? Anyway, the corkscrew looking thing comes out at this point and I look away or look at the back of his head. It's very quiet besides every so often when the anesthesiologist gives the nurse instructions to raise or lower the juice. And from time to time, he tells us that Spencer is doing just fine.

Once the sample is collected (I believe this time they're just taking the marrow and not the bone chip), we wait for him to wake up. I sat by his head and was reprimanded for petting his hair. They like kids to wake up on their own and within half an hour. Spencer didn't spontaneously wake up within that time so they gave him a little nudge and my rad baby boy opened his eyes and smiled. He had a little milk, we got him dressed, drove home, and it was like nothing ever happened.

I'm walking myself through it all in preparation. I'm trying to remember all the details of last time as a sort of reminder that it really won't be that bad. TUESDAY will be bad when I can't take my eyes off the phone, waiting for the results. But hopefully, like last time, there is no Leukemia. Though I want some type of result. I don't want him poked and prodded every 2 weeks and have constant biopsies. I don't want him living like that. And selfishly, I don't want to live like that either.

If there IS Leukemia, life is really going to change next week. Scary thought.

One of Spencer's docs called yesterday. At first I thought she was just checking to make sure we spoke to the Sedation Unit and were all squared away. It turns out she wanted to talk about his results from last week. After a pathologist looked at his slide, it was confirmed that the amount of abnormal cells had increased to the 5-10% range. Yes, it's not 14% like the computer read but it IS an increase which is not what we want. Abnormal cells need to go DOWN. Platelets and white blood cells need to go UP. As of right now, things are not trending how we would like so I'm very nervous about what we might find out after Monday. But the important thing is that he's not acting like a sick child. He never has.

My mind is sort of all over the place. I've got a lot going on with school, I'm working, I'm hanging out with my boys and my husband. I'm plenty busy. But things still slip in there that I can't shake. I can't focus. Stupid stuff. If he goes into treatment (he'll stay at the hospital for the duration), am I responsible for his food and diapers? Will he always be in a gown or can I bring pajamas? What about his toys? Can he have visitors? Can his baby brother visit? Is there a place where I can take a shower (because if you think I'm leaving him, you're BANANAS)? And how long will he/we be there? Is he going to be completely exhausted and sick all the time?Will his hair fall out? Is the fact that he's really skinny a bad thing? Is he going to waste away to nothing? Is he going to survive this?!?!?! Am I going to survive this?!?!?!

It's stuff I don't need to be thinking about. As of this moment, he does NOT HAVE LEUKEMIA. But I can't help thinking. I'm a planner. I want to be prepared. I don't want the wind knocked out of me. I'm so lucky to have people to lean on. Besides my family, I've got great friends. Spencer has a few honorary aunts that get a text every time there is important news or updates. I depend on those chicks to keep my head screwed on because I know no matter what batshit crazy thing I say, they're not judging me. They're just concerned about our little guy. And when I say "our", I mean that as in EVERYBODY. Spencer is everybody's little guy. He has more girlfriends now that most dudes have in their lifetime!

And on a NON-Spencer note, I would like to mention that as of yesterday, this blog has surpassed my previous blog in visits. I kept that blog from 2005 - 2011 and it had 770 posts...that's 5 years longer than I've had this blog and 5 times the posts. So I feel really good about what I'm sharing here for it to be visited so frequently. It's sometimes hard to talk about what I talk about. Some things I don't talk about at ALL. But this is where I empty out my heart and brain and for whatever reason, people are reading it. They keep coming back.

Thanks for that.

Monday, January 21, 2013

We'll Call This Round 2: The Second Bone Marrow Biopsy

Spencer will have his second bone marrow biopsy next Monday, the 28th, and Todd and I will both be with him like we were last time. I'm sure it wouldn't have been hard to rustle up someone to go with me since Team Spencer is plenty large, but it's important for both of his parents to be there. While it may be a basic procedure, he'll be under anesthesia and that's a big deal. Both of us should be there with smiles when he wakes up.

And believe me, I'll be smiling when this is all over. It hurts my head a little to think that I still have to wait another week. And biopsy day was a LONG day last time. Exhausting. And even WORSE was waiting allllll day the next day for results. My phone was practically embedded in my hand. I was certain they were going to find Leukemia. I feel the same way now so maybe I'll get my pants shocked off again. I hope. All I can do it hope. But really, things aren't really looking in our favor.

Every week in my A&P class, we have to write about a certain topic that pertains to what we're studying. This week, we have to select a type of cancer and write about it on a cellular level. What it is, what tissues/organs it effects, treatments, etc. I chose Leukemia since it seemed like the obvious choice. It would've been cowardly not to. And I figured I have heard so much from all our clinic visits anyway. An old pro.

But in all actuality, I haven't really heard much about the treatment. It's not something they wanted to discuss unless he had it for sure. No reason to play "what if". I know the intial treatment would be inpatient chemo but that's where the line was drawn. Now I've done a lot of reading and my head and heart hurt a bit. It kind of sucks to know as much as I do about Leukemia now.  And it will REALLY suck if he gets admitted next week. But we'll cross that bridge when we come to it (and I will try not to jump right off that stupid bridge).

So that's where we're at. Wanted to keep everyone updated.

Thursday, January 17, 2013

Bare Bones: Super Vulnerable and Not At All Witty

I had to put the nightmare of a stomach bug I'm wrestling with on the back burner yesterday to take Spencer to his Oncology clinic appointment. 2 weeks really flew by and in that 2 weeks, he gained back the half a pound he lost AND gained another quarter of an inch. Growth is great. Sick kids don't tend to grow (however, he will be seeing a nutritionist soon as his weight fluctuated over the last few would think with his condition and his thyroid issue that being OVERweight would be the problem but he's my little string bean - but he is NOT malnourished or they'd see it in his blood boy knows how to EAT).

All of his vitals were great and they got his blood on the first try with no tears from my brave little guy. One of his docs and I went over the little bits of rash and bruising that seem to be appearing more frequently and she completed her exam. Any swelling they felt in the liver and spleen at his last visit is gone. Another plus.

Not so great, yet not totally horrific, were his blood results. His platelets are down again and his abnormal cells are up from 5% to 14%. Now that's a pretty big jump so it COULD be an error. This percentage was determined by a computer and a human ALWAYS checks this number...but we don't find out right away. So the percentage of abnormal cells could be wrong. We have to wait and see what the tech says. The bottom line is that it's been 2+ months since the abnormal cells showed back up and he had his bone marrow biopsy and nothing has resolved. So it's time for another biopsy. FFFFFFF.

We knew this was coming. At some point, it either has to be Leukemia or it has to resolve. Nothing has resolved and the only way to know for certain what might be lurking is to look at the bone marrow. I knew this was coming. I was prepared for it. And I wasn't even THAT concerned because the first biopsy was far less awful than I thought it would be. But DAMN, am I SAD. Really, really, really sad. And sick. Sick and sad don't mix well. But anyway, I'm waiting for a call from his doc to see what the sedation unit has available but it's looking like next week or the week after. We need some answers. This hanging out in Limbo bullshit is getting pretty old.

But of course, Spencer is totally unaware. He's as active, crazy, and happy as ever. Add this to the PRO category because he has NEVER acted like a sick kid. So maybe he's not sick. Or maybe if anything nasty is hanging around, it'll be caught before he has a chance to act sick. Until treatment that is. Ugh, I really can't even stomach that thought. And the thought of being away from Sully. He gets put on the back burner more than he should with all of this. I wish I could just turn my brain off. Just for a minute.

Also weighing heavy on my brain are the reports from Spencer's ST/PT appointment on Monday. Physical is totally pumped. He's making all kinds of strides. And while Speech is also happy, he's definitely a little behind with Expressive speech (actual communicating). I was told that it's common because low muscle tone makes it hard to balance breathing and speaking, that's why the PT is so important. Building his core muscles will help with speech, as will some exercises with play and imitation.

That's where the Early Intervention Specialist comes in. She's going to start coming to our house once a week (in addition to his monthly ST/PT appointments) to basically play with Spencer in order to give him the boost that his speech needs. He's got stuff to say, for SURE as he babbles like a champ. And we'll do whatever we've got to do to help him wherever he needs help. This specialist knows what to do. But she marks his TENTH doc/specialist/therapy/appointment/what-have-you. TEN. At 17 months old. Pediatrician, Oncology clinic, ST/PT, Occupational, Early Intervention Specialist, his regular specialist (who may not be a part of Team Spencer after his next appointment), ear and eye docs every 6 months, his in-home evaluations, and the Endocrinologist.

How are there such monsters in this world who do TERRIBLE, unimaginable things but it's my awesome, innocent little dude who has so much on his plate? Who has already endured so much at only 17 months? And WHY can't I help him more? It makes me want to scream until my ribs pop, graphic as that may be.

I think because I don't feel well, all of this junk just seems so much worse than usual. Because usually, I'm the one with the "hope for the best" attitude. I always think that whatever Spencer does, no matter how small, it's basically like him walking on the damn MOON. I am his biggest cheerleader. I never think of him as sick or behind or struggling...but now I kind of am and I'm hating myself for it. I'm being a sucko mom. He's the one that's going through it all and he's doing it like a champ so there's no reason for me to be having a pity party. I'm blaming it all on this stomach thing. It's sucked the will to function like a normal human being right out of me.

Just hug your babies tight. Or your pets. Whatever.

Rambling over.

Monday, January 14, 2013

#*&@!%&$*!$@#^#$&: Stuck In Sick City As Spring Semester Starts

Say that 10 times fast!

Actually, it wasn't as difficult as I thought.

Spring semester starts today along with 2 of my classes, Intermediate Algebra and A&P 1 lecture and lab. At least I'll be able to get my footing where these two mind-blowers are concerned before Inorganic Chemistry wrecks my life, along with my ability to keep my head attached to my neck. All classes are online, which is handy what with being the mother of two young dudes, but online classes can be tougher than being in the classroom. It's all on you to learn what you need to and do well. But I've got a goal and that goal is straight A's so I really have no choice now, do I?

My ambitious goals would be a lot easier if I'd stop throwing up.

I've been weirdly nauseated, with no other symptoms, for the past few weeks. Totally manageable, just a little swimmy in the guts. But as of last night, it's become some nightmarish stomach bug. I can't keep anything down. The only relief I get is from chomping on peppermints but I'm running low. And it doesn't help that I'm having my 1st visit from Aunt Flo in 2 YEARS and it's draining me...of my energy. I'm hoping not to pass this (the illness) on to the boys because being sick is the last thing they (especially Spencer) need. I'm hoping it'll pass soon because I just don't have time to have my head in the trash can. I'm BUSY.

Spencer is busy, too. Friday he had his OT check up. Things went pretty well, I'd say. He wasn't as motivated to show off as usual. He was moody and some things that he totally CAN do, he just didn't feel like doing. He had his own plans. But they didn't feel the need to increase his visits so he must be making progress. CHECK. And we also talked about him getting on a wait-list for a pre-school program that kicks off at age 2. It sounds like a lot of fun for him (he loves other kids) and I'll do anything to help him make progress. CHECK CHECK.

Today he has ST/PT and I KNOW they'll be happy because as I've previously stated, he's really come into his own in the past few weeks. He's even starting to show interest in pulling himself up on lower furniture. It's awesome. And I'll be anxiously awaiting my report from Todd.

I sometimes worry about Spencer's speech development but he's making all kinds of new sounds and babbling for long periods of time, like he's having a conversation or telling a story. He's been saying "mama" a lot and definitely knows who and where mommy, daddy, and Sully are when asked. It'll fall into place as everything seems to be. One day, out of the blue, he'll just start talking to me and I'll probably drop dead on the spot. I look forward to hearing what he has to say.

Wednesday is our next clinic appointment. Just want answers.

And not to always put him last, but Sullivan is doing awesome. He is bursting with personality. He chubby and funny and I can't get enough of him. I hate that it seems like I talk about Spencer all day because I love them EQUALLY. But Spencer just has a lot more on his plate. Sully is lucky that his main agenda is eating, sleeping, pooping (ass EXPLOSIONS), and playing. He's lucky to just be your average happy baby, even if he's anything but average to his mommy.

So that's my life as of today. Sickness, school, sons.

The end.

Thursday, January 10, 2013

Back In My Groove: Surviving My 1st Week Out Of The Bubble

Well, it's Thursday, the last day of my work week and I have survived being away from my favorite dudes! I will reward myself with a Peppermint Pattie from the giant bag of candy I brought to make myself feel better if I was feeling blue. The first day, I felt like I was doing something wrong being away from them and did have to use a few of my tissues. But after a few hours, I felt like I had never left this place and it was right back to business. And business has been busy which makes the day/week fly by. The play time and snuggle sessions we've had when I've gotten home have been SERIOUS after being separated from them for the day (yes, I've gone to bars, movies, etc, but I could ALWAYS leave and go home to them which isn't an option when you're at work). And they've been doing GREAT at the babysitter's. I'm so lucky to have such laid back goofballs for kids. This much I know.

And one of my goofballs is making some serious progress. This might not mean a lot to anyone but me and my family, but Spencer has been sitting up on his own for the last few days. Yes, he's been balancing himself with his hands but he's on his buns, legs out in front. It's been a loooooong time coming. This is something he should have done (yes, I know all babies are different), over 6 months ago but was difficult due to his low muscle tone. He army-crawled like a machine way before he tried to sit up. Every time I see him upright, you would think I won the lottery. Add that to the crawling and the clapping, his teeth coming in, giving himself a juice bottle (still working on the sippy cup but I was told that the cup is a very difficult skill to master), taking off his pants, and all the new things he's been doing, and the past month has really been amazing where his development is concerned.  So...go Spencer! We've so proud of you!

Money is pretty tight this week since I haven't had a paycheck for a hot second so it'll be a weekend of time at home, which I am more than OK with. I'm becoming a home body more and more but that's where my kids are and they are free entertainment. I will have to venture out into the world for Spencer's occupational therapy appointment Friday (PT/ST on Monday and back to the clinic Wednesday to sort out this Leukemia bullshit) but he's been doing so amazing where his fine motor is concerned that I think he'll get a rave review. But other than that, I see pajamas, movies, and kickin' it. And one of those movies MAY or MAY NOT be "This Is 40" which I MAY or MAY NOT have a copy of. Two of my spring classes start on Monday so I need to soak up as much chill time as possible. My brain hurts just thinking about it all.

I'm going to take a chance and say that life is good right now. Spencer's health situation isn't GREAT but until they put a name on it, I'm going to try not to play the "what if" game and go ahead and say that life is pretty good. Not so good is all the sneezing I've been doing this morning but if a runny nose is the worse thing I deal with, I'll consider today a success.

The question in my Q&A a DAY journal (you answer the same question every day for 5's like a time capsule of sorts) is "List Something That Inspired You Today". Feel free to think about that.

Sunday, January 6, 2013

First Post Of The New Year: Back To The Grind

I've showered, shaved my legs, painted my toenails, made my lunch, packed my bag...and said bag is filled with tissues and several bags of candy..., laid out my clothes, and set my alarm. So this can only mean I'm going back to work tomorrow. I just kissed both my boys and told them how much I will miss them. I've gotten weepy a few times today, I'm not going to lie. It's going to be so hard. I'm very envious of stay-at-home moms right now but I know that's not possible nor what they need. The next 20 weeks are about banking as much as I possibly can.

Which leads me to tell you that I put in my notice at work. My 20 week notice.

Starting after Memorial Day, I'll be going to school full time so Todd and I decided that I will just focus on being a student and a mom. Kent only accept like 30 students out of 100 applicants into their Nursing program so I need amazing grades. I need to be totally focused. Technically I'll be a full time student as of this Monday but all my classes are online so it's more manageable for me to work for now.

Thinking about not being at The Coast makes me very sad. My dad gave me a good job when I needed one and I enjoyed my 5+ years there. It will be weird not to see him every morning but I'm glad he understands. I want to be a nurse. I should've done this back when I was 18 but life doesn't always go how you plan, plus I was pretty foolish back then. So tomorrow starts my last 20 weeks as a Purchasing Agent. And while I'll miss my little dudes, I know that at the end of May, I'll have more time with them. It's exciting.

Though being unemployed for 18 months is pretty scary.

What else is scary? Being in limbo with Spencer's health situation. We went to the clinic on Wednesday and while his platelets have gone up a bit, they're still low. And there was a little swelling in his liver and spleen, some petechiae (rash related to blood disorders), and a little bruising. They mentioned doing the second biopsy at the end of this month or the beginning of next. We've been monitoring this junk since around Halloween so they're hoping to "put a name on it". Todd and I really believe they're waiting for Leukemia. I'm holding on to hope that we'll be surprised again.

Until they decide when the biopsy will be, we'll go to the clinic every other week. They told me that whether they discover something in 2 weeks or 4 weeks, the treatment wouldn't change and neither would there confidence in the success of the treatment. The timing is all about a smooth transition INTO it doesn't end up being an emergency or a rush. It's all scary and sucko and I just want to know what the Hell is happening with my little dude. This has gone on long enough. It's heartbreaking.

Also heartbreaking is that after 3.5 months, Sullivan is sleeping in his crib tonight for the first time. I'm trying not to think about it too much. It's time. Spencer slept in his crib from the day he came home. Part of it is the fear or something happening and part of it is knowing ill never have another little baby again. And part is the fact that he's still not really sleeping through the night. It was easier for me to just have him in a bassinet in our room. But tonight...he's a big boy in his own room. Sigh.

So I'm expecting to have a hard time sleeping and I'm expecting to have a rough day at work. But knowing Spencer will be having fun at the Rainforest with his aunt and Sully will be having some one-on-one time with his daddy makes me feel better. But I do hope they'll miss me at least a little. Selfish, I know.

Double sigh...