Roll Over!

Finn reached a huge milestone this week - he turned over from tummy to back and from back to tummy!  The tummy to back happened for the first time with the nanny, but I was prepared for the second time and actually caught it with my camera.  He's now done it repeatedly, every time he's put down for tummy time.  (Have I ever mentioned how much he hates tummy time?)

You think you can subject me to tummy time?

Watch this!

Oh this is harder than it looks!

Phew!

Who's the king of rolling over?

The rolling over from back to front was an accident (see above mention of hating tummy time).  He was on his side already, and just rolled on over.  He has tried to replicate the move a couple of times because he was trying to get closer to the cat, but he hasn't quite mastered that skill yet.

And then tonight he sat up on his own, with no assistance, for a full 10 seconds.  I looked around for someone to tell, but (one of the drawbacks of being single) no one else was there.  I have plenty of people I could have called or texted, but we were in the middle of getting ready for bed.  And then I did talk to Heidi and my sister after that and forgot to tell either one of them.  How is it possible to be so excited about something one second, and then completely forget about it the next?

Vagus just jumped in my lap, and I noticed one of his claws looked a little funny.  They're all much longer than usual, and I have tried repeatedly over the past year to clip them because of that, but he wouldn't let me.  He doesn't usually, but this past year he's hissed and bit at me whenever I've tried.  Tonight I noticed that one of his claws is growing into the pad of his foot!  There's a big clump of litter on it, which is why I noticed it in the first place.  I can't believe I never saw it all the times I tried to clip his claws this year, but that's probably why he's been so violent whenever I've tried.  Poor Vagus.  I bet his limping is all from his foot, too, and not arthritis, like I thought it was.

Follow-Up with the Surgeon

Thanks for all your words of support after my last post.  I'm feeling better the past few days, thanks to what you all had to say, as well as a few good things that have happened in the past week.

I found a workout that does a lot to burn off some of that anxious energy, almost as good as a long run would: a long walk with Finn strapped into my Becco carrier.  Wow, my heart rate was up, I was short of breath and I had a nice long snuggle with my boy, all at the same time!  I've really been missing my workouts, so this is a huge discovery for me.

Then the oncologist called me on Friday to tell me she'd heard from another specialist, this one at Stanford, who agreed with the plan to just watch Finn's tumor with serial MRIs.  Two out of three specialists agree - this is the plan to go with.

Finn had a follow-up appointment with the surgeon today, which was the icing on my cake for the week (and it's only Tuesday!)  Turns out, the surgeon actually trained with the oncologist from Seattle who recommended that Finn get another biopsy, and he said that she always wants more tissue - she always recommends another biopsy when there's any question of what to do next.  Knowing that this is her usual advice makes me feel much better about not following her recommendation.  Is that twisted logic or rational logic?  I just don't know anymore.

What made me feel even better was what the surgeon said would happen if Finn did have to have another surgery.  He said that he'd have to take the entire nerve (the ganglion) that is involved, possibly making his Horner's Syndrome worse, and ensuring that it would never get better.  That's not so bad, Finn looks kind of cute with a droopy eye, but what's bad is the fact that he'd also have to try to get tissue from the part of the tumor that's around the brachial plexus - which would risk damaging the nerves that control Finn's right arm.  And that would be bad.  The surgeon reiterated the fact that infants tend to do really well with this cancer, so the chance of the tumor growing isn't worth risking permanent damage to get more tissue right now.

Today my anxiety is manageable.  It's still there, but I don't feel like I'm about to drown because of it.  Especially when Finn is such a happy boy.

Crazy Worry

My mind is a jumbled mess these days and the post that follows makes that amazingly obvious.  Perhaps I should consider getting a prescription for Xan.ax.  Or maybe I need a vacation.  Too bad I don't have any vacation time left.

I feel like I have been on overdrive for weeks.  The daily stress of what the next step is going to be with Finn has passed, and now I'm immersed in various work projects that take up my time during the day and at night after he's gone to sleep.  I'm so far behind in everything I need to get done and am feeling a lot overwhelmed (I should be doing work right now, but I just had to take a break).

This is on top of the constant worry I have in the back of my head about what the next MRI is going to show.  What if it's gotten bigger or spread?  Is waiting really the right thing to do?  Is this just the calm before the storm or is the worst already behind us?  What if things get a lot worse, and the unthinkable happens?  I've had more than one near panic attack thinking of the possibility that Finn won't make it through this.  I'm hoping that some of this worry will ease off once his next MRI is done, but then I worry that even if the next one is ok, what will the one after that show?

I'm usually not a worrier, and this whole "mom worry" thing was foreign to me to begin with, but add the cancer worry into the mix and I really don't know how to handle suddenly being a constant worrier.  My anxiety seems to be the worst during the day when I'm pumping.  I don't know why that is - maybe because that's when I miss Finn the most?  Or maybe it's one of the few times during the day that I'm alone and it's quiet.  As much as milk supply can be affected by emotions, I'm amazed that my milk supply isn't diminished at all by the amount of anxiety I feel during that time.

Overall I do a good job of putting on a happy face.  My nurse knows I'm not doing as well as I act like I am, but I don't think anyone else does.  Hopefully my patients don't realize when I'm feeling ridiculously annoyed with them, especially those who don't know what's been going on the past 6 weeks.  I don't know why it's so important to me to put on the brave face, but there are times I feel like giving in and having a meltdown in the middle of my office.

Finn is doing just fine.  More than fine, he's thriving.  He wakes up smiling and babbles and coos constantly (occasionally waking up at 4am to have long conversations with either Vagus the cat, or my pillow, I'm not sure which).  He watches everything I do intently, puts everything in his mouth, is fascinated by the cats and loves bathtime and listening to me sing.  Last night I noticed that he could no longer straighten his legs in his size 6 month footed sleepers.  How could a 4 month old who is wearing 9 month sleepers and weighs 18 pounds possibly have cancer, much less a cancer that could even consider spreading?

And yet I can't help but worry.  While hating how neurotic I've become.

Message from Finn

September is National Childhood Cancer Awareness Month.  I think I'd be a lot happier if I had no reason to know this, but since I do, here's a link to Alex's Lemonade Stand and a list of things you can do to help in the fight against this disease.

And in honor of the month, Finn has a message he'd like to share with everyone, in the way only an 18 pound 4-month-old who is kicking cancer's ass can:

A Decision Made

Dr. Maris - the neuroblastoma guru - has looked at Finn's history and given his recommendation.  And that recommendation is no chemo and no surgery for now, just observation!  Based on the location of the tumor and the fact that what the surgeon did get was completely necrotic, he believes the risk of the surgery far outweighs any potential risk of watching and waiting.

To say I'm relieved would be an understatement!  I was preparing myself for another surgery - and to pack up and take Finn somewhere to get it, and I was really dreading it.  I know there's still a chance that one of his future MRIs might show a change for the worse, and surgery might still be in our future.  But right now everything looks good and there are no major medical interventions in the next month. A world renowned expert believes that serial MRIs are the way to go, and plan that makes sense to me. I'm still going to worry, of course, but for now I'm going to try very hard to live in the moment, and let tomorrow take care of itself.

As I catch up with work, I'm hoping I'll have more time to read and comment on blogs - I've been keeping up with everyone, but I miss being able to comment regularly.  I'm hoping I'll have a little time to read books again, and I'm hoping I'll have lots of time to play with Finn without a cloud of constant worry over my head.

You all have no idea how much your comments over the past month have meant to me.  The words of support really have kept me going and I will forever be thankful for them!

A Little News from the Oncologist

Finn at 4 months

Thanks to a series of unfortunate events, I'm still waiting to hear from Dr. Maris at CHOP.  But I finally talked to Finn's oncologist today and at least have some new information.  While she was waiting for Dr Maris, she sent Finn's information to another neuroblastoma expert, Dr. Parks in Seattle. Her recommendation was that we get another biopsy, which would mean another big surgery for Finn.  This is something that Dr. Bolen had said might be necessary early on, but the surgeon said he thought he'd gotten the best specimen he could (and the pathologists agreed it was a good sized specimen), and he didn't want to go back in, since it would mean trying to get tumor that was in a more delicate location.

I understand why Dr. Parks recommends another biopsy.  To start with, we still don't have an absolute definite diagnosis of neuroblastoma.  But more than that - we don't know how aggressive a tumor it is, if it is a neuroblastoma.  It's not unheard of to just watch a neuroblastoma that hasn't spread yet in an infant, but in all those cases they know that the cancer has what's called a "favorable histology" - and we don't know if that's what Finn has.  If we could do another biopsy and it showed favorable histology, we'd know that just watching was the right thing to do.  And if comes back as "unfavorable histology" we'd know he needed chemo, because that has a high risk of spreading.

But, on the other hand, the surgeon got 30% of the tumor and it was all necrotic.  What's not to say that the rest of it is necrotic, too and that it really is dying on its own?  I'd hate to do another surgery if Finn doesn't really need it.  And the oncologist agreed with me, but then went on to point out that we might be missing something by waiting.  Her words, "I don't want to miss something, but at the same time I can't help but remember the golden rule of medicine 'First, do no harm.'"  It's such a grey area, that it's hard to know what the right thing to do is.  I just want someone to tell me what to do.

I really did not expect to get the opinion that other surgery was needed.  I don't know why, but that was something I'd just put out of my mind.  I was so thrown for a loop after talking to her this afternoon, I have no idea how I managed to get through the rest of the day seeing patients.  I talked to my sister on my way home from work, and cried some while I did, which surprisingly did help me feel a little better.

Being in limbo sucks ass.  I'm more upset and stressed out now than I was when we were in the hospital - I'm constantly filled with a sense of dread, I'm having horrible nightmares and a daily headache.  I don't want to hear that Finn needs another surgery, or that he needs chemo, but at this point just knowing what needs to be done would be so much better than this constant state of anxious waiting.

I really hope Dr. Maris gets back to my oncologist soon.  And then I hope we can quickly come up with a plan.  The one thing I do know for sure is that if surgery is our next step, I'm taking Finn somewhere like Sloan-Kettering or CHOP for the surgery.  I didn't feel the need to take him somewhere else for a second opinion on medical management, but if another surgery is needed, I really think taking him to a surgeon who the neuroblastoma experts use is the thing to do.

Still Waiting

Waking up from post-MRI nap

Finn was a champ with his MRI yesterday.  They called me back to recovery around 9am, and we were home and getting into bed for a post MRI nap by 10am.  He was happy and cheerful the entire rest of the day, which made my recovery a whole lot easier!  We're still waiting to hear back from the expert at CHOP, and I haven't heard anything about the MRI, so I'm guessing that means it was ok.  We weren't really expecting to see much more than it being a little smaller after the surgery, so no news means that was the case.

Tonight I had Nanny M stay late and I went out to dinner at a really expensive restaurant that I didn't have to pay for and had a wonderful glass of red wine - my first since I tried red wine to induce labor back in May. Which means that was my second glass of wine in 14 months.  I probably shouldn't have had it, or should have drank it faster so there'd be the requisite 2 hours between wine intake and nursing (instead of just an hour from when I finished it), but I didn't.  I figure, I did everything right during pregnancy and my baby still got cancer - one glass of wine probably isn't going to hurt anything, right?

Dinner was actually a drug rep talk, but it was a round table discussion, which meant that after we did the business of talking about the drug, we were able to socialize.  It was all women with young children (including the woman who first gave me the idea of Finn as a name) so we had a really nice time.  It was my first dinner out without Finn since he was born, and while I missed him terribly, it was nice to go out and just be an independent adult for awhile.  I don't have any interest in going out without him on a regular basis, but once every month or so might be nice.

MRI #3

I'm sitting in the surgical waiting room, waiting for Finn to get his MRI.  He wasn't supposed to eat for 6 hours before our appointment, but we all know that a breast fed baby's stomach is completely empty by 4 hours, so I just lied to the anesthesiologist.  I set my alarm for 2 and fed Finn then - he was sound asleep so I had to work on waking him up first, which meant he didn't actually finish eating until 2:30.  Which means that he was without food for 4.5 hours before his anesthesia.  I'm such a rebel.

It was still dark when we got to the hospital this morning, and due to a clerical error we had to wait a little longer than usual, but finally we were brought back by Alison, who we know from his last MRI.  The nurse was also someone we already know, and Finn actually seemed happy to see her.  When I finished lying to anesthesia, they were ready for him.  The nurse wrapped him in a warm blanket and then took him from me, pausing to look into my eyes and say, "We'll take good care of him."

He watched me over her shoulder as she carried him back to the MRI with a happy little look on his face like, "C'mon Mom!  This'll be fun!"  I really hope he stayed happy after he realized I wasn't going with him.  And I really hope they sedate him before they start his IV, because I know how much that hurts and how much he hates it.

Of course I cried on the elevator up to the waiting room.  And I'm trying not to cry now.  I guess it's time I face it, no matter how many tests and procedures he gets, I'm still going to dread every single one, and wish that I could take the pain for him, or wish that I could least explain why people keep hurting him.

Life Right Now

I have a million ideas for blog entries swirling around in my head, but they’re swirling so much I can’t settle on just one right now.  So instead, I’m just going to blog about life right now.

Being back at work last week was rough on Finn and me both.  Finn has been having a lot of separation anxiety and been incredibly needy, wanting to be held almost all the time.  This weekend I did get him to play on the floor and in his exersaucer, but he really wanted me to be right there next to him almost the entire time, which makes it difficult to get anything done.  He’s even gone from being happy with anyone holding him, to wanting only me.  BB brought me (an incredibly yummy) dinner this afternoon and he was happy with her holding him for a little while, but started to get fussy much sooner than he usually would, especially with me sitting right beside him.  Another friend that Finn knows well came over for a visit this weekend, and he had an absolute meltdown when I left the room while she was holding him.  I know he’s been through a lot the past few weeks, but it seems so early for him to be having any separation anxiety!

Finn looks so happy and healthy and normal – it’s still hard for me to believe that he has cancer.  The prognosis is great (90% survival rate at 5 years) but that means 1 out of 10 doesn’t make it.  There’s nothing about Finn’s case that makes me think he would be in that 10%, but that’s still the fear that lingers.  I manage not to dwell on it too much, but by avoiding thinking about it, I find myself struck with paralyzing fear at the most unexpected times – when out on a walk and having a random stranger comment on how cute he is, when singing his favorite song to him, or when looking at him asleep in my arms.

Before his first MRI, I’d planned on working on getting him used to sleeping alone, at least back in the cosleeper for part of the night, and I’d planned on trying to start putting him down before he’s fully asleep.  But now I find that I don’t want him anywhere but right beside me at night, and I’m still rocking or nursing him to sleep, and then keeping him with me while I do my paperwork for work before bed.  Am I spoiling him?  Am I making things easier for me now, but harder for the future when he won’t go to sleep without me? 

Despite his new insecurities, Finn is still a happy baby a lot of the time.  I finally managed to get him laughing on video – I still haven’t captured his belly laugh, but those are still few and far between.  The strangest things make him laugh – when I took this video it was me saying “lalalala” that he thought was funny.  Yesterday it was me singing Justin Bieber that did it - and me singing anything is really worthy of a good laugh, so at least that one made sense.

News from the Oncologist

The pediatric oncologist called today with the pathology results from the neuroblastoma lab.  She said that all the tissue they received was necrotic - there weren't enough live cells to do the genetic testing on to make a definite diagnosis of neuroblastoma.  So while we're fairly certain that it's neuroblastoma, all the pathologists can say is that the tumor "favors neuroblastoma", but they don't have any specimen that is good enough to be able to make a definitive diagnosis. 

She has a call in to the surgeon, but based on what he said after the initial pathology results came in, she doesn't think that another surgery to get more tissue would be helpful.  The surgeon thinks he got the best specimens he could and doesn't think he could get anything better by doing more surgery. 

So the oncologist has sent all the information she has on Finn to Dr. Maris, a neuroblastoma expert at the Children's Hospital of Philadelphia (CHOP) to get his opinion on what we should do next.  Her feeling is that without an absolute definite diagnosis, we should hold off on chemotherapy, especially since it looks like the tumor might be dying on its own, anyway. 

Dr. Maris might feel differently though, and since he's the guru, I'm going to go with whatever his recommendation ends up being.  Which means there's a chance we might still end up with chemo.  But for right now, I'm going to allow myself to be optimistic that we're just going to be doing some watchful waiting for a while!

If we don't do chemo, Finn will get an MRI next week to act as a post-surgery baseline, and then another MRI in about 4-6 weeks to see if there's been any change.  Funny how just 3 weeks ago, general anesthesia for an MRI was the worst thing I could imagine, and now our current plan of two more MRIs in the next month or so is good news!

I'm really looking forward to the upcoming long weekend.  I'm exhausted and ready for a few days off.  I have a few blog posts I want to work on, a LOT of blog commenting to do (I've been reading, but not commenting much) and tons of emails to respond to.  I can't think of any better way to spend the weekend right now than holding Finn as he naps and spending time doing just that.  Unless it's napping right along with him.