Lucky Number 13

Finn had his 13^th MRI on Tuesday.  I've always dreaded each and every MRI, but after last year’s experience, Finn has, too. At random times during the past year he's said to me, “Mommy, I don’t want another MRI,” and while I know it’s not something either of us thought about constantly, it has been weighing on both our minds.  Over the past few weeks we have done several rounds of role playing to prepare for the MRI, with both me being the patient and him being the patient (and I’m astounded by the level of detail he remembers from the last one). But I didn't want him to worry more than he needed to, so I didn't tell him he was going for his next one until the morning of the scan. When I told him that it was his MRI day, his whole face crumpled.  “I don’t want that thing on my arm” he said, referring to the bandage they put on after they took off his bandage.  “And I don’t want the mask.” 

I was prepared for this, and once we talked about the bandage and the mask, I told him I had a surprise for him to watch after his MRI.  Not one, but two Star Wars Lego movies.  This did bring a smile to his face and relieved the imminent threat of tears, but he still wasn’t happy.  When I was buckling him into his car seat, he looked at me and said, "I really hope the MRI shows that I'm healthy."

We had his ultrasound first, which he actually really liked.  The tech was fabulous and turned the screen so Finn could see it, and when it was clear he knew the names of the organs, she started telling him what he was seeing, turned on the color flow so he could see blood flow and even turned up the sound so he could hear the blood rushing through his veins.  He was nervous when he first walked in the room, but he had a huge grin on his face by the time he was done. 

Then we went to MRI.  They didn’t keep us waiting long at all, and within about 15 minutes of walking into the department, the anesthesiologist was giving Finn his “yucky medicine” (Versed).  He swallowed it down like a pro, and then complained of the taste for a few minutes before he started giggling.  He was the cutest little drunk ever.  Once he was very relaxed and happy, the anesthesiologist scooped him up out of my arms, let me give him a few silly kisses and he was on his way without even the slightest protest. Most of the staff in radiology and in recovery remembered Finn, and while he didn't remember them, it was very reassuring to me to see the familiar and friendly faces of people who sincerely care about how Finn is doing.

He was crying when I came up to get him recovery, and cried even harder once I was up there with him, but then started to clear up a little and asked me if his MRI was done.  Hearing that it was, and being allowed to drink some apple juice brightened his spirits considerably.  By the time we made it to the oncologist’s office, he was wobbly but smiling. 

We had to wait until yesterday morning to hear the results, but they were worth waiting for.  Not only was his MRI good, it was great!  He’s had a residual area of abnormality ever since his surgery that we thought would always be there as scar tissue.  Only this time, it is completely gone.  The entire area looks absolutely NORMAL.  That alone is great news.  But to make it even better – the guidelines have recently changed for children diagnosed with neuroblastoma in infancy.  It used to be that the recommendation was continued imaging through age 7.  But now the recommendation is only for 36 months after treatment.  Which means NO MORE MRIs!!!!! 

Over the past year I'd managed to forget the worst of the fear and worry that comes with an upcoming MRI.  I've even gone days on end without once thinking about Finn's diagnosis.  Or I thought I had.  The immense sense of soul-deep relief it gives me to know his risk of recurrence is now so tiny that he doesn't need another MRI is just staggering. I cried. More than once.

I’ve always felt a little like an imposter when I tell people that I have a child who was diagnosed with cancer, since he never had chemo or radiation, and the prognosis was such a good one to begin with. But it was still horrible and awful. It was much better than what some have gone through, but it still really sucked.  

I will be forever thankful that he did not have to get chemotherapy. 

There is not a day that goes by that I don't send out thanks to universe for the life of this this bright, inquisitive and funny boy who enriches my life so profoundly.

And now I'm incredibly thankful he no longer has to worry about his next MRI.  And neither do I.  

Deep Breath

I called the oncologist's office this morning, and at lunchtime a nurse called to give me the good news.  Everything looks nice and stable - no changes in the residual tumor.  Even though this is wonderful news, it took a few deep breaths to get that message from my brain to the rest of my body.  I didn't realize just how keyed up I was about the results until I heard the good news.  It's possible that pesky insomnia that's been keeping me from falling asleep the past few weeks might be related to this MRI.  I guess we'll see tonight!

I'm going to have a whole post about it later, but just one week into listening to Peaceful Parent, Happy Child, I have found it to be transformative in how I feel as a parent. I knew something was missing in our relationship, that there was something Finn needed that I was missing, and this was it.  Empathy.  So simple, and yet so profound. The MRI was really rough on Finn, and his behavior has reflected this over the past few days.  I have been so much better equipped to handle his behavior, and as a result, he went to sleep tonight with a smile on his face, despite a few tricky moments earlier in the night that would usually have led to both of us being upset and exhausted. I'm looking forward to continuing to work on my peaceful parenting skills and seeing how our relationship grows and strengthens in the process.

No News is Good News?

pre-MRI selfie

I woke Finn up early yesterday morning, "Today is MRI day? I'm so excited!"  He thought it was hilarious that I caught his pee in a cup, and asked if I had it with me multiple times through the morning. He was excited to get his bracelet in registration, and loved the toys in the waiting room, but his excitement disappeared the second we stepped back into the MRI suite.  

We had a new anesthesiologist - a young guy just out of training who was relaxed and easy-going with Finn, introducing himself as Matt with a fist bump for Finn and a smile for me.  Finn adamantly refused to even consider drinking the Versed - he remembered the "yucky medicine" from a few scans ago and was having none of it.  He was clearly nervous, so Matt tried to talk him into it, but Finn was having none of it.  But - for the first time - I was allowed to come back into the MRI room with Finn.  I carried him in and held him while they told him it was time for his astronaut mask and brought it to his face.  And that's when he shocked us all by absolutely freaking out.  Screaming, kicking - he was having none of it.  We struggled for a minute (as I got whiffs of the gas - yuck), and then I turned him around in my lap so his back was against me and I could hold his arms down.  He still screamed and cried, but was asleep in seconds.

The nurse (who we know well) walked me back to the waiting room and reassured me that I'd made the right decision.  She thought that if I'd pressed the Versed, we would have fought him trying to get him to drink it, he wouldn't have gotten any in, and then we would have still had to fight him in MRI. I hope she's right.

This was the fastest MRI day ever.  We barely waited after checking in, and they were done with the MRI and the ultrasound in just under 2 hours.  He had just woken up when I got upstairs, and I was able to climb on to the stretcher with him and snuggle.  Poor Finn cried and fought when they checked his temp, again when they put the pulse ox on his toe, and again when they took the IV out.  He was hoarse and sounded so miserable.  At one point as I held him I said, "I know this is scary, you are so brave." He said, "I'm not brave." He sounded so pitiful.  I explained to him that being brave means doing something even when you're scared, but I'm not sure if he understood.

He did perk up when it was time to leave, and one of the nurses pushed us down to our car in the wheelchair (ALL the way to our car, talk about great customer service!) and he was just about completely calmed down by the time he was buckled into his car seat.

playing with a craft project while waiting for Dr. B

Our visit with the oncologist was also fast.  He got his blood count checked (another stick, but just in his finger and he was so good and patient, though he clearly didn't like it), and then we met with Dr. B.  His ultrasound and blood counts looked good, but the MRI results weren't back yet.  I've carried my phone with me nonstop, but still haven't heard anything.  And today was so crazy, that by the time I had time to call, the office was closed.  I'm fairly certain I would have heard something by now if there was anything bad on the MRI, but of course I'm still anxious, and won't feel relief until I hear from Dr. B.  If she doesn't call by the time I take my break to pump on Monday, I'll call her.

headed home

After getting Finn settled at home, I spent the afternoon out.  I did some shopping, bought some new clothes, and got a manicure and a pedicure - wonderfully relaxing.

Bedtime was rougher than usual - but I remembered what I'd been learning from Dr. Laura Markham's book, and kept my cool.  And then as we snuggled in bed, I asked Finn how getting the MRI made him feel.  "Sad.  I didn't like that mask." "And how did it make you feel that I helped them hold the mask on your face?" "Bad." My heart hurt hearing him tell me what I already knew was true.

I hugged him close and told him I was sorry that I had to help them, and I was sorry that he'd been so scared.  How do you explain why you have to do something like that to a 3 year old?  I couldn't do it.  I just told him he needed the MRI to make sure he was healthy, and then told him again that I was sorry, and that I hoped his next MRI wouldn't be so bad.

He snuggled up next to me and said, "Next time, I think I want to drink the yucky medicine."  And then he went on to tell me, "Tell those guys, those MRI guys, that I want to take that mask and throw it in the street so cars will drive over it and break it and then they can never use it again!"

We had lots of snuggle time today, but not as much time for roughhousing as I think Finn needed, because it scared Zachary. So Finn and I have a date for a ticklefest tomorrow when Zachary is napping.  Followed by more snuggle time.

Scanxiety

Captain "Camerica"

Somehow, it's been 6 months and tomorrow is Finn's next MRI.  This one is different from all the others, because he really remembers his last MRI.  I debated not telling him about it in advance, but decided that was a bad idea.  So we've been talking about it since this weekend.  He's asked me some questions, like "will there be any boy nurses?" and "why do they have to put that thing on my arm?" (after some questioning, I realized he was talking about the IV). We talked about the anesthesia before the MRI, then that he might wake up before I came to get him, but there would be nice nurses there to take care of him, and that I would be there soon. We then talked about going over to see the oncologist - all he remembers from that office is that he got a present when he left.  He's excited about the possibility of getting a present, and he's really looking forward to his special treat after the MRI.  He's been obsessed with Peter Pan lately - I blame Jake and his band of pirates - but has never seen the movie.  I ordered it this weekend, and it arrived in time for him to watch tomorrow when we get home.

I think it will be important for me to be home for a little bit after we get back, so I'm going to snuggle with him on the couch until he's into the movie, and then head out to run some errands and destress a little on my own.

It's impossible for me not to feel anxious before each MRI.  The chance of recurrence is really small...but they make him get these MRIs for a reason.  I'm not sure if it's because it's been 6 months instead of 4, or because I'm more tired than usual or what, but I'm feeling really anxious right now.  There's not been anything new lately to make me worried, I just can't help it.

Someone asked on my last post if I worry about Zachary getting the same cancer.  I don't. I did think about it before trying to get pregnant again.  Finn's oncologist reassured me that it was unlikely to be a genetic thing, and the genetic counselor at the sperm bank did the same. So I'm not too worried.  But I am worried about a recurrence with Finn.  Every day.

And on that cheerful note - here's this week's pictures.

7/16/14: can't get enough of Z in his favorite pose

7/17/14: such a peaceful sleeper

7/18/14: baby got back

7/19/19: I know I'm cute

7/20/14: loving his first tastes of green beans

7/21/14: a little more serious (and yes, he spends a lot of time in this chair)

7/22/14: this foot tastes delicious

Eleventh MRI

Simba got an ID band, too!

Today was Finn's eleventh MRI (at least I think it was #11, and I'm much too tired to go back and count them all to be sure).  Unlike previous MRIs, he wasn't scheduled until 10am, which was nice because we didn't have to get up early, but was hard because he couldn't eat or drink anything during that time.  So last night before bed I let him have a full cup of caffeine free Diet Coke (he usually only gets to sip mine, so this was a huge treat), encouraged him to drink a lot of milk and let him eat a big snack before bed.  All that seemed to work, as he didn't complain about being hungry and he was apparently an easy stick for the IV this time, as he didn't come out with needle marks all over him like he usually does.

Since he wasn't going for the MRI until 10, they had him do his ultrasound first (usually they do it after the MRI, when he's still sedated).  The ultrasound tech was incredibly nice, and said that he'd scanned Finn before, but always when he was asleep. Finn did not want to have anything to do with the ultrasound, though, so it took a lot of coaxing from both of us to get him to cooperate.  What finally worked was the tech suggesting that I put the probe on Finn's tummy first, and after that he was completely fine.

After the ultrasound was over, I told Finn to say thank you and he said, "Thank you for doing my ultrasound." So cute!

Surprisingly, we had almost no wait after that for the MRI.  The anesthesiologist was one we'd never had before, and he said he preferred doing the sedation without Versed (after the last guy pretty much refused to go without Versed).  So I walked with them to the door, but they wouldn't let me into the MRI room, so I had to leave him crying and upset, though the anesthesiologist reassured me that they were ready with the anesthesia and that he'd only cry for a minute.  THAT was AWFUL.

But the post-MRI experience was incredibly easy, without Versed on board.  Finn wasn't crying, though it was clear he had been before I got there (I'm pretty sure the nurse waited too long to call me post-scan) and he was very clear headed.  He told me they'd just taken something off his mouth that he didn't like because it made his mouth hurt but that it didn't hurt anymore, and that he wasn't scared. Oh, and that I couldn't pick him up until they got "all this stuff off me." It was harder for the nurse to check all his vitals than usual, as he cried about everything, even though nothing hurt, and then he really cried when they took off the tape to remove his IV.  But then he was pretty ok after that, and didn't seem upset at all with me holding him.

Right after we got to recovery

He was a trooper at the oncologist's office, too.  No crying or fussing at all, and was just incredibly cute with everyone, and aside from being just a little off balance, he was his normal self (thanks to some snacks and a little water). Again, no waiting, which is a great benefit of the later scan, though clearly they were staying through lunch just to see us.

We got the results just a few hours after we left the doctor's office - all look stable!  So we get a nice long break from MRIs - the next one won't be until August!  And then after that, we go to annual scans until he's 7.  That's a long time to follow this, but so wonderful to know that we've almost graduated to once a year scans.

My dad went with us, and it was so nice to have someone there with me, as well as to have someone who could carry Finn, since there's no way I could have done that much carrying right now.

Such a huge feeling of relief, every time one of these is over and the report is good.  A very, very good start to 2014!

Bad Day, Good News

First, the important stuff - Finn's MRI showed that the residual tumor is stable, and the questionable lymph nodes seen last time are either stable or smaller, and are now considered to be normal "childhood lymph nodes."  So we should be going to every 6 month MRI's now, except that 6 months from now is early March.  And I really can't imagine doing an MRI day with a newborn.  So we'll do 4 months instead, and then go to 6 months after that - and hopefully one a year very soon after that.

Now, the crappy details of our day.  It started out well.  I was on time, Finn was incredibly cooperative, we were having a fun drive in, and then we hit bumper to bumper traffic.  The car in front of me started to go, then stopped suddenly - and I started to go, but couldn't stop, and I hit her.  I'm not going to go into all the details, but she seemed lovely, completely understanding when I exchanged information with her, and gave her my info (including my license so she could see I was telling her the truth about my name!), and was ok with me leaving while she waited for the police to come.

We were just a few minutes late for our MRI, but then registration was running way behind, and so we didn't get back until almost 8 (we got there a little after 7).  And then MRI was running behind because of some unexpected pediatric cases, and so it was closer to 9 before Finn went back.  He was such a trooper.  He played in the waiting room, he smiled at everyone, and kept asking me, "Where are all these people going, Mommy?"

The anesthesiologist came in to talk to me and I discussed my fears.  He said that it was equally likely that it was the Versed or the anesthesia agent that caused his reaction, and that it was unusual to happen just one time, but he thought that since it was just once, it was likely that it wouldn't happen again.  But while he was willing to not do the Versed if I wanted, he really thought it would be better if we did.  And then he reassured me that we could stay in recovery until I was sure he wasn't having the reaction, and if he did, I could keep him there, with nurses to help me, until it was over.

So I decided to give him the Versed.  He hated it, kept saying how yucky it tasted, but within minutes was relaxed and snuggling in my arms.  He didn't complain at all when the anesthesiologist took him back, and it clearly didn't matter to him if I went back with them or not (I had take Claire's suggestion and asked if I could be with him until he was under), so I opted to let him go alone, as a state trooper was waiting in the parking lot with me.

The trooper was very nice, apologized for having to give me a ticket, had me fill out a report, and that was it.  Then he said, "I'm sorry you've had such a rough day, I hope everything goes ok with the MRI" and of course I started crying.  I got myself together before I went back into the hospital, though, and thankfully decided to splurge on a muffin and a Diet Coke while waiting.

I called my insurance company while I waited, then got work done, and agonized over the wait until a volunteer finally came to get me and told me I needed to go with him back to radiology.  Another volunteer had just told me that Finn was in recovery, and they were going to call me up soon, so I was very confused.  I kept questioning him, and he said that they were taking him to audiology, and that a nurse would come meet me there, and that he wasn't even in recovery yet.  So he left me standing in the waiting room in radiology, wondering what the hell they'd found that made him need audiology, and why I was in the radiology waiting room.  As I was waiting for someone at the front desk to be free to help me, I realized that even if they had found something, there's no way they'd take a toddler straight from anesthesia to audiology, so I relaxed a little.

As it turned out, they couldn't do the ultrasound that he usually gets while still in MRI, because there was no tech free.  So they were going to take him straight from recovery to ultrasound, and was to go wait in ultrasound.  I'm sitting in the waiting room, again in tears, imagining Finn freaking out and wanting his Mommy, but being surrounded by people he doesn't know instead.  Finally, after what seemed like hours, but was probably only 5 minutes, a nurse came to get me and took me back.  She explained that he had been sound asleep while in recovery, so they were hoping to get him down and into ultrasound still asleep, and thought he'd be more likely to stay asleep if I stayed downstairs.  But then he woke up on the way down, and so he was lying on the big huge gurney, whimpering for mommy when I finally got to see him again.

He visibly relaxed when I walked in the room, and even managed a few giggles after he had some snuggles with me.  The ultrasound tech was wonderful and helped Finn not be afraid of the test, and so he was very still and cooperated with the entire thing.

It was 11:40 before we left the hospital and headed over to the oncology office - we're usually heading home by this point.  Finn never had a meltdown, though he was a little on edge, and very upset by his lack of coordination.  He played happily with all the toys in the office while we waited, and finally at noon we were taken back.  He was weighed and measured (and was so proud he could do it on his own) and basked in all the attention from everyone who remembers him and commented on how big he is and how cute he is.  He demanded that his blood pressure be taken in his arm instead of his leg, and corrected the doctor when she asked if she should listen to his foot with her stethoscope, "Listen to heart!" He cried a lot with the toe prick, but even then giggled at Elmo between his tears.  He's such a brave boy!

While were in the office, I got a call from my insurance company.  The woman I hit was now seeking medical attention (this was seriously just a fender bender, so really?  WTF?), so now it's been assigned to someone new.  I didn't get the message until later, but think I'll call and talk to the person now assigned to my case, just to get a clearer idea of what's going on.  Just one more thing to stress about, and really makes me wish I'd explained that my son's MRI today was to follow up on his cancer.

It was 1:30 before we left oncology, so I was exhausted and starving by the time we got home at 2.  Usually we're home by noon, so this was not at all expected, or I would have brought food for me, and not just for Finn.  I left Finn with Nanny M, got some really disgusting fast food, and then went to my OB appointment.  That was followed by a wonderful massage appointment (my massage therapist is truly a miracle worker, best massages I have ever had in my life, and I've had a lot!), and then acupuncture.  Thank goodness it occurred to me to schedule those today, because I really needed them.

This is the sort of day that calls for 3-4 glasses of wine.  But since I can't have that, I guess I'll go have some ice cream and go to bed.  (And then indulge in one more ugly cry before I go to sleep.)

Thank you for all the good thoughts today! That did help make the day a little more bearable.

Scanxiety

Have you ever had one of those days weeks where the stress just built and built until suddenly you realized you were about to have a breakdown?

Yeah, it's been one of those weeks.

Some of the stresses are good (hello! still pregnant over here!), some unexpected (random phone call from an old friend who ended our friendship badly 7 years ago), some are chronic (does anyone have a nonstressful job these days?), some are getting worse by the second (less than a month until boards and I'm so NOT ready), some I'm not ready to talk about yet (hopefully soon!) and then of course there's tomorrow's MRI.

Of course there's the usual anxiety about what the results of the scan will show.  But then there's the added anxiety of the anesthesia.  You might remember that last time he had an epic and violent meltdown after anesthesia, which I attribute to him getting a full dose of Versed (a sedative like Valium) before his scan for the first time.  He's gotten Versed before, I'd just never managed to get the full dose into him, until last time.

The Versed calms him down, so that he's nice and mellow when they take him back for anesthesia.  Then it also has the nice side effect of causing a little short term memory loss, so he doesn't remember going back for anesthesia, or the mask going over his face to make him sleep.  That sounds lovely, but if the anesthesiologist agrees that his meltdown last time was Versed-induced, we're going to talk about maybe not giving it to him this time.

I'm worried about how much he'll remember this time around, and then how much he'll remember the next time...and the time after that.  I'm worried that he'll start to get scared at the idea of going to the doctor or the hospital.  I'm really worried about him being frightened with all the strangers around him and me not right there.  I hate this.

Before I work myself up into another crying jag, I'll end this post with something funny.  A few mornings ago Finn came into the bathroom as I was getting out of the shower.  He decided it was time to take off his nighttime diaper, and as he did, he said, "There's pee-pee in there!"
"Yes there is," I agreed.
"Finn's wee-wee was in there," pointing to the diaper.
"Yes, it was."
"Does Mommy have a wee-wee?"
"No, Mommy doesn't have a wee-wee."
"Mommy, you go store and buy a wee-wee?"
"No, I don't think I need a wee-wee."
"Oh, shooey."

Two Years!

Two years ago today I got the awful news that Finn had cancer.  Even now it still seems impossible - my chubby little baby with the droopy eye had neuroblastoma.  Today I rarely find myself actively thinking about it, but I find that that experience has colored the way I look at the world, and my time with Finn.

After some struggle to conceive (after years of being single and thinking I would never have a baby because I couldn't find a husband), and after a miscarriage, I already knew I was pretty damn blessed to have my boy.  But those dark days in the hospital, imaging surgeries and chemo and of course, even imagining the worst case scenario, have made me even more acutely aware of how lucky I am. And that is something I never forget.  Not for a second.

One of my fav pics ever - morning of surgery

Today, he still bears the marks of his cancer.  His right eye is blue (and just the tiniest bit droopy) while his left eye is brown.  When he gets hot, only the left side of his head and face sweat.  His right hand is always cooler than his left.  He has two small scars on his right chest from the surgery.

One of the few pics I can easily find that shows his two eye colors

I can go days without noticing these little things about Finn, but then suddenly the light will hit him a certain way, and I'll notice all over again.

But mostly I notice how silly he is.  How he loves to say, "I wuv you, Mommy!" and "Stay in bed and snuggle with Finn, Mommy!" And how quick he is to laugh, and how opinionated he is about things he really cares about.  Like having all his pool toys in the pool at the same time.

His next MRI is September 6th.  That's the MRI that his oncologist sees at the one where she stops worrying.  Which means that I won't stop worrying, but maybe I'll worry a little less.  

Yesterday I asked Finn if he wanted a baby brother or a baby sister.  Usually he says he wants a baby sister.  Yesterday he changed his mind.  "I want a dog."

Maybe he'll get one of those, too.

Quick Update

I have so much going on this past few weeks, and so many posts swirling around in my head, and just no time for any of it.  I have a feeling this is going to become a recurring theme for me over the next few months...or more likely the next few years.

I finally talked to Finn's primary oncologist yesterday afternoon.  She said she wasn't worried about the lymph node at all.  It looks completely benign, and no where near the tumor, so she thinks it's just the radiologist being overly dramatic.  She does want to do another MRI in 4 months, though.  That will put us at 2 years from Finn's initial diagnosis, and she says that at that point, if all is still well, her level of worry drops drastically.

As much as I hate the thought of another MRI in 4 months, it really isn't that terribly different from another MRI in 6 months.  And if that is her magic point for feeling less worried, then I'm ok with that.  So August it is.

*****

Today was Finn's original due date.  I told him that this morning when we got up.  "And I'd like to point out to you that your birthday isn't for another 10 days." He wasn't very impressed.

Holy cow.  In 10 days, my baby will be 2!  How is that even possible?

MRI #9 - Updated!

Yesterday was Finn's 9th MRI.  We seem to be on a trend lately of each MRI being worse than the last...let's hope that's not a trend that continues, because I'm not sure I can handle another day like yesterday!  And, to add insult onto injury, I still don't have the results of the MRI yet.

I started off the morning by oversleeping.  It was only by about 20 minutes, but it meant that I had to rush, and I left with my wet hair up in a ponytail.  Finn was asleep when it was time to leave, so I picked him up still sleeping and he didn't wake up until we walked outside.  Two Canadian geese flew overhead as we walked to the car and Finn woke up to their honks: "Birds!"  He was happy in the car and easy to entertain while we waited to meet with anesthesia.  We had the same anesthesiologist as last time, and Finn took the Versed like a champ (the first time he's taken all of it).  He was so stoned by the time they were ready for him.  He was watching Diego on my phone and giggling like a loon, and when we lost signal, he giggled at making funny faces on my camera phone.  Finn happily went with the nurse and doctor back to the MRI, and I gave myself my morning Lupron shot before going to the waiting room.

It was just about the fastest MRI ever (which increases the chances that it all is stable), but Finn was still really sedated when I went back.  He had the same nurses he's always had before, and they were all giving him tons of love and attention.  I considered rocking him until he was a little more alert, but decided we'd go ahead and head over to the oncologist's office, hoping we'd then manage to get home earlier.

What a nightmare.  He wiggled and squirmed in my arms the whole walk down to the car.  And then when we got to the car, a meltdown of epic proportions started.  Screaming.  Yelling.  Crying.  Nothing worked to calm him down.  I tried to cuddle him for a few minutes, but he continued to scream, so I got him into his car seat and we drove over to the oncologist's.  He calmed down when we first got out of the car, but that didn't last.  He was so doped up he couldn't stand up on his own, but wanted to stand up.  He didn't want me to put him down, but he didn't want me to hold him.  He wanted to play with the train, but he didn't want the train.  He wanted his pacifier, but threw it across the room when I gave it to him.  And the screaming.  Oh my god, the screaming.  There was a couple with a small child in the waiting room, and they completely avoided even looking at us.  I could feel their judgement, their criticism of my parenting skills in the looks they gave each other as they studiously avoided looking in our direction.  At one point, Finn threw his pacifier across the room and it landed right at the woman's feet.  She looked at it, and then looked away.  Finn was hitting and spitting and being just awful, and I was about to lose it.  I know it was all the anesthesia, but I didn't know what to do to make him feel better, and the silent (underserved) judgement from the well dressed couple in the room was just about more than I could bear.

And then Hannah, our nurse came out to call Finn back.  She took one look at us and came rushing across the room, "Oh Finn, you're never like this after anesthesia!  Poor boy!  Oh, the medicines really made you upset this time. Mom, let me help you!" and she grabbed our stuff, including picking up his pacifier, as the other parents looked on with what I hope was guilty expressions.

Hannah was wonderful, and as soon as we got to the exam room she got out toys she thought would distract Finn - we finally settled on bubbles.  She was in there blowing bubbles for almost 10 minutes until he was calmed down and was actually giggling.  He was great after that, and even let her get blood from his toe without fuss.  He was still off balance and fussy, but the meltdown was over.

Our usual oncologist was out, so we saw someone else - who wasn't really sure about what the plan was, and who assured me she'd call as soon as she got the MRI results.  When it was 4pm and I still hadn't heard, I called their office.  And they were closed already.  I spoke to the answering service, but the oncologist I saw wasn't on call, and they won't give out results after hours.  So we wait until Monday.

While this was a pretty crappy day thanks to Finn's epic post anesthesia meltdown, it's amazing how much worse an MRI day is when there's no news at the end.

I'm really wondering if the Versed is the cause of his bad reaction, as he's never had a full dose before and this is the first time he's had such a bad reaction.  I think next time (which is hopefully 6 months from now, instead of 4 months!) I'll see if we can just give him half.  Just enough to take the edge off - it's only to make it easier for him when they take him back and not really necessary for the anesthesia.

We have no big weekend plans, which is good, as I now have a horrible headache.  At least Finn is fully recovered from his anesthesia and back to his usual happy self.  

***Update***

The doctor called me earlier today to give me the results of the MRI.  The primary tumor is nice and stable, which is good news!  There was one lymph node they've been keeping an eye on that looks a little bigger, though.  As she's not Finn's primary oncologist, she didn't want to give me a finalized plan.  So we're still waiting to hear back from Dr. B on Monday or Tuesday about the plan for the next MRI.  Lymph nodes can get bigger for all sorts of reasons, so it's most likely nothing more than something that's going to buy us another MRI in 4 months and a little more worry for me.

MRI #8

Not counting the first devastating MRI in August 2011, this was the worst MRI yet.  But first, the news is good, at least the preliminary report showed the tumor is stable.  And the oncologist doesn't think the tumor will get any smaller at this point, as it's mostly all just scar tissue.  We're just monitoring now to make sure it doesn't get bigger.

I was hoping today's MRI would be a little easier, as my parents are here and both wanted to come with us.  Around 6:15 this morning I realized that their light was still off, so I stuck my head in, and they were still asleep.  We needed to leave at 6:40 at the latest.  So of course we were a few minutes late.  Finn slept until I woke him up to change his diaper (and remove the cotton balls out of his diaper so I could squeeze the urine out of them for his urine specimen).

The receptionist recognized us when we checked in, and gave Finn a teddy bear - so sweet!  We had a new anesthesiologist today, and he was a little nervous talking to me, I guess because I'm a doctor.  Which was funny, but sweet. Now that Finn is older, he gets a little Versed (a sedative) before they take him back so he won't be too upset, only he ended up spitting most of it out on me instead of swallowing it.  The anesthesiologist was so sweet - he said, "If he cries, I know that will be hard on you, but it's actually a good thing.  When they're worked up they inhale the gas more quickly and they fall asleep much more easily.  I think it's actually easier on them that way, since they aren't fighting the mask."  So when Finn cried when they took him, I was prepared.  Prepared enough that instead of crying myself, I took a picture.

Seeing it now makes me get a little choked up, but it was nice to not cry then.  I warned him that Finn hadn't been drinking much when he was sick, so I thought he'd be a hard stick.  And he was. It took 3 docs over 20 tries to get an IV started.  Luckily he was asleep for all that, and the little stick marks all over him don't seem to bother him at all.

The wait was forever today.  I'm pretty sure we were there waiting for a good hour longer than usual. So of course I was starting to get worried, because that usually means they found something.  When they finally called me up to get Finn, he was crying. He was hungry, but then he didn't want to eat, he wanted to be held, but he didn't want to be held.  Then the nurse thought to give him ginger ale in his sippy cup.  Magic. We diluted it with ice, and he drank the entire can and the ice as it melted.

There was a little blip, because they did actually find something wrong.  There were some weird streaks on his MRI in his lung, that might be pneumonia.  So he also had a chest x-ray, which he hated, and that took another 10 minutes to calm him down from.  The chest x-ray also showed a hint of something, so he's now on his first ever round of antibiotics.  His fever has been gone now for 24 hours, but I think it's worth it just to be on the safe side.

We were at the oncology office for a while longer than usual today, too.  But as always, they were all super nice - the nurse and the child life specialist took good care of him.  He also got a Joy Jar (read about them and the amazing girl who came up with the idea for them at www.negu.org) which he hasn't gotten into yet, but is sure to be a hit once he does.

My parents were with me the whole time, except right before they took him back for his MRI, and then when he was in recovery.  They mean well, but they just aren't helpful.  Well, they're helpful if you ask, but they're not the sort of helpful that's good when you're a stressed out mom dealing with a toddler, because in those cases, it's often hard to even think to ask for help.  It was nice to have someone carry my bags though, when I was carrying Finn.  That was a huge help.

He somehow didn't fall asleep on the way home, and then refused to nap once we did get home (must have been all the sugar in the ginger ale).  I had hoped to have an afternoon of running errands without a toddler, but apparently my parents forgot about this plan, and left for the mall shortly after we got home.  When it became clear he wasn't going to sleep, I took him shopping with me.  It was not a fun experience, as he was understandably off kilter, but I had to get some things done.  And then he fell asleep on the way home, and is still asleep, an hour later than he's supposed to be napping.  I'm sure this means bedtime will be awful tonight.

I am so glad to have another MRI behind us.  With each good report, I worry a little less between scans, but the week before an MRI is always a rough one.  Every plan I make for the week after an MRI, I wonder if we'll be able to make it, or if we'll be facing cancer treatment instead.  Ever good report is a huge weight off my shoulders, and makes me feel so very lucky for how well Finn is doing, when there are so many other children who are not.

Lucky Number 7

Post-MRI Finn

Finn's 7th MRI was this morning.

The morning didn't start out well.  Finn was up for hours last night, for no apparent reason (third time since Friday that he's done that), and so I was exhausted when my alarm went off less than an hour after he finally fell asleep.  I ran late getting ready, just making it out the door at the latest possible time I could leave and still be on time for our appointment.  Halfway there I realized I'd forgotten Finn's urine specimen.  Of course.

But I still made it there on time, and Finn was shyer than usual, but still friendly with the check-in staff who recognized him, and with the radiology staff who brought us back. Unlike last time we had almost no wait; he barely had time to play with the toys before we were brought back by someone I remembered from Finn's first hospitalization.  The anesthesiologist was one I'd never met before, but I loved her.  She gave me Versed to give to Finn (though she did refuse when I asked if she'd give me some, too), and while it took effect we talked about diabetes and families.  Finn has a healthy dose of separation anxiety these days, so I was really worried about him crying when I had to leave him, but with the Versed on board he just gave me a goofy, somewhat crossed-eyed grin when I kissed him before they took him back with not a tear in sight.

The amazing anesthesiologist contacted ultrasound and had them do their scan while Finn was still sedated, which made things much faster and easier, since I didn't have to fight him while they did the scan, and she also had the MRI tech burn me a copy of the MRI, which I'm not very good at reading, but sure does look cool.  I can't find the primary tumor here, we know it's smaller, but I don't know how much because the report wasn't finalized when we saw Dr. B later this morning.  On the left (the right and anterior side of the picture) I can see what I think is the secondary tumor that has gotten gradually smaller each scan, as well. But I don't know for sure...there's a reason I'm not a radiologist!

Finn's handsome profile

 But I'm getting ahead of myself!  My wait seemed to last forever, as it always does, but finally they came to take me up to recovery.  Finn was his usual happy self post-anesthesia, maybe even more so than usual since the Versed was still in his system.  He was surrounded by 3 nurses all just gushing over him, and he was on the bed, half drunk with a little smile on his face as his pacifier dangled out of his mouth.  He smiled even bigger when I came in the room, and wanted me to hold him, though he was so limp and floppy I almost dropped him.  The nurses again talked about how unusual it is for a child to wake up from anesthesia so happy.  I have no idea how he does it, but I'm so glad that he does!

We did have a bit of a wait at the oncologist's office.  Finn staggered around playing with toys while I tried to keep him from falling, until he suddenly decided he was hungry.  We were out of the baby food pouches, so I'd brought a jar of sweet potatoes along, figuring those would be easy on his stomach.  He insisted on feeding himself - always a messy proposition, but today was even worse with the sedatives still on board.  But he ate and then was mostly happy for the visit with Dr. B.  She had to call radiology to get the report, but came back to give me the good news that the tumor is continuing to get smaller!

Our next MRI was supposed to be in February, but she recently had a baby with neuroblastoma who had a recurrence after a year, so she's been leaning more towards doing an MRI every 4 months instead of every 6.  And since Finn has never been the usual case, she definitely wants to do that with him, so his next MRI will be in December.  This entire year, I've had it in my mind that once Finn made it to a year with a consistent decrease in the tumor size, the chance of recurrence would be tiny, but it turns out that Dr. B doesn't think that risk really drops until age two.

I have a feeling I'm going to be a basket case before the next MRI.

It's tempting now to get bogged down in the worry again.  I had a flash of absolute terror in the waiting room today when I started thinking about what might happen if the scan looked worse today and after 6 months of only minimal worry, it was awful.  For the most part I manage not to worry too much, but this change of plans has shaken me up just a little bit.  (Though it does reassure me that she mentioned this change of plans before she had the MRI results.) It's also tempting to feel sorry for myself and for Finn. Except that we were in an oncologist's office today and saw children that were much sicker than Finn has ever been.  Including once sweet boy with a tracheostomy and a round face suggestive of a lot of steroid treatments, who didn't talk, but came over to Finn and showed him some of the toys, and then showed off his presents he got from the Treasure Chest before he left with his mom.  He was clearly a sick little boy, but also sweet and kind.  And a reminder to me that I can worry all I want, but it's not going to change anything. So just need to enjoy my sweet and kind boy and let tomorrow take care of itself.  Easier said than done, but I'm going to try!

Finn and Bella (Nanny M's dog) yesterday afternoon

MRI Report #6

25lb boy, waiting at the oncologist's office

I'll start with the most important news first - the tumor has decreased in size again!  It's still there, but this time it measured 0.9 x 0.5 cm, which is pretty damn impressive compared to 2.4 x 2.3 cm in September.  Of course I started crying when I heard the news.

It was another long day, as all MRI days seem to be.  I slept horribly, thanks to the sense of dread I felt the entire night.  Our day started at 5:30, when Finn woke up crying inconsolably for no clear reason.  He finally calmed down, and seemed like he was going to fall back to sleep, so I cuddled in the bed with him until 6:30, when he suddenly woke up all the way and grinned at me.  We had to leave at 7:15, so I had to get ready in record time, and was so proud of myself when we were pulling out of the driveway at 7:15 exactly.

This time we started with his abdominal ultrasound first, and he did not like it at all.  I nursed him while he was getting his ultrasound the last time, but since they started with that today, he was still not allowed to eat or drink anything, so I had to entertain him with a sticker and singing, with variable success.  We then waited for a while before we were taken back to meet with Dr. Y, the anesthesiologist, one we've had many times before, and who seemed genuinely happy to see Finn.  (In fact, it was the same guy who said, "The baby with CANCER for the MRI?" back when Finn was first diagnosed.)  I think it was another 30 minutes before it was finally time for Finn to get his MRI.  Despite the fact that it was well past his breakfast time, Finn did great.  He was a little fussy, but easily distracted and very cuddly. Usually one of the nurses takes Finn from me, but this time Dr. Y carried Finn out of the room - Finn waved at me as he was carried out, and then I saw him smile around his pacifier at one of the techs who was following them into the MRI room.  That made me feel so much better, and amazingly I didn't cry. 

He was in MRI for almost an hour and a half, but was again flirting with the nurses when I went back into recovery to get him.  He had one single tear on his face from where he'd cried when they took his IV out, but waved to everyone when we left, and blew a kiss to his nurse, so it doesn't seem like it was that traumatic.

At the oncologist's office he had his blood count checked (which was all completely normal for the first time ever) and barely cried at all because he was busy being entertained by bubbles when the did the stick to get his blood.  Dr. B came in a little while later and said that the ultrasound continued to be normal, but the MRI hadn't been read yet.  I didn't get the results of that until I was almost at the office.  This is the first time I haven't had time to call anyone immediately with the news, or time to update here.  I talked to my sister, and texted a few friends and that was it.  I definitely did not tell my mom that I'd gotten the results an hour or so before I talked to her.

I had a headache and felt nauseated most of the day - the headache is finally easing off, but I still feel pretty rough.  This neuroblastoma diagnosis is like a dark cloud that's hanging over me, one I can ignore to some degree, but I never completely forget about it.  Some days, it threatens to overwhelm me, especially when I hear about bad things happening to other children.  The days before an MRI are always the worst, because I just can't ignore it, and all the fear I've ignored for the preceding few months kicks in and just about smothers me.  I think that cloud lifts just a little after every MRI, but as Dr. B said today, I'm going to be scared before every single MRI.  We aren't going to be free of this for another 6 years.  Yep, his last MRI is scheduled for right after he turns 7.  The oncology team is very optimistic, and says this is just to be on the safe side, but damn, it just sucks that we have to be doing this.  I wonder what the first year of a child's life would be like, not having to face a cancer diagnosis.  I really, really hope I get to find out sometime in the not too distant future with Baby #2.

I think that for his next MRI I'm going to take the entire day off.  I might even have Nanny M come in the afternoon and treat myself to massage or something once the results are in.  This going to work after a long, stressful morning thing is just stupid.

Meltdown

Brushing his teeth

As I was cleaning up downstairs last night, I heard Finn wake up and start crying.  At first I thought he could wait until I finished a few things, then I realized that this wasn't his "I woke up and you aren't here" cry, it was his "I'm in distress" cry.  I ran up the stairs, and found that he had half fallen out of the bed.  It looks like he'd wiggled around so much in the bed that he wiggled right around the bumpers and went head first over the edge - right between the bed and the bedside table.

He wasn't hurt, but he was very shaken, and I had to cuddle with him a long time before he calmed down enough to sleep.  And so, tonight, I decided to put him in his crib instead of in my bed.  It was a disaster.

He was definitely tired.  He half-heartedly nursed, and then I put him in the crib.  I sat on the floor next to the crib while he cried.  It wasn't 15 minutes before his cry sounded exactly like his cry last night when he was stuck on the bed.  Even though I was right there rubbing his head, patting his bottom, he sounded like he was terrified and miserable.  I caved and picked up him, planning to rock him to drowsy and try to put him back in the crib.  But he was pushing against me, refusing to even relax, and squirming all over.  I found myself getting irritated and then getting mad at him. So I put him down on the floor and let him crawl around, with tears still wet on his face.  He calmed down for a few minutes, then got fussy again, so it was off to bed for us.

He nursed once we got in the bed, but then was doing his whole "sit up and crawl around and try to take another header off the bed" routine.  Suddenly I lost it.  I turned my head down to the bed and just sobbed.  Finn stopped his fussing and crawling, reached out and patted my hand.  Then he leaned over, put his head down next to mine, pulled back my hair, took one look at my face and cracked up.  Full on giggles and snorts.  So of course I had to laugh, too.  A few slobbery kisses (from Finn) later, I was still tearful, but he settled down and finally fell asleep.

I never felt like cosleeping was the wrong thing for us, until he started getting more mobile and I worried about his safety.  After the last two nights, I really don't know what the right thing is anymore.   Going to sleep was already hard enough, and now that he's not completely safe in the bed, either?  What am I supposed to do?

To add to my anxiety and worry, his next MRI was just scheduled for May 2 (which was, coincidentally, his original due date).  I hadn't been too worried about it until last week when I mentioned to LB that it wasn't scheduled yet.  "Don't you want it to be after vacation, you know, in case...." She said another something like that this weekend, something along the lines of, "And even if the MRI shows something bad, you know you'll be able face it."  I've been so focused on thinking positive that it never even crossed my mind to contemplate the alternative.  Until now, anyway.  I know that this is just the way her mind works (the glass is always half empty, despite her attempts to pretend she thinks it's half full), but LB said very similar things after the first ultrasound with my first pregnancy, when she knew it didn't look great (but I didn't).  And so her saying those things has more power to make me anxious than if someone else said it.

I'd be the first to say that with my underlying level anxiety running so high, now is not the time to try to change our sleep routine.  But do I really have a choice?  Maybe last night was just a weird freak incident? Maybe Finn is ok and I just need a vacation?  (Four more days.  Four. more. days.)

Sadness

Joey died this morning.

There are things that aren't ever supposed to happen. A child dying is one of them.


I will never forget that moment on the phone, sitting in the hospital room rocking my little boy who was still out of sorts from the anesthesia, hearing that they had found a tumor. I could feel my heart pounding in my chest as my breath caught and my mind raced, imagining all the potentially horrible things to come.

Every night as I cuddle with Finn now, I'm filled with love for him, and thankfulness that he is managing to fight off this horrible disease, and that he's been able to do it so far without chemo or radiation treatments.  I am so unbelievably thankful.  I will always worry - not just the normal nebulous mommy worry that every mom has, but that specific fear of what might happen because of this tumor. The fear born out of the reality of hearing your son has cancer. And while I can't possibly begin to know what it's like to deal with the disease the way that Joey's parents have, I think I can come closer to imagining it now, having experienced that afternoon in August and the terrifying weeks that followed.

There is no way to make sense of this sort of thing.  I've said before that I used to think that "bad things happen for a reason." But what reason could there be for a little boy who loved Legos and Star Wars to die?  What reason is there for a 3 month old to be diagnosed with cancer?  What reason is there for a baby to be born still at 20 weeks?  Or for a woman to have miscarriage after miscarriage - or never be able to get pregnant at all?  There is no reason that is good enough to explain these things, or the other bad and horrible things that happen.  If only there were words that existed to make the hurt go away, to make things right when they go so horribly wrong.

Last week Joey's mom posted something on their Caring Bridge site that was beautiful and heartbreaking. I haven't been able to stop thinking of it this week, so I'm sharing it here, in memory of a beautiful little boy I only knew in passing, and in honor of his family.


Lullabies and a rocking chair have been a special part of our days together since we brought Joey home from the hospital in May of 2006.  Sitting in the glider, all sleep deprived and overwhelmed, I would cradle him in my arms and together we would fall fast into sweet sleep.  These last weeks have been deeply reminiscent of those early days as I hold him in my arms and rock, a familiar music playing in the background.  Just as he did nearly 7 years ago, Joey drifts into the land of little boy dreams while I stare and take in the face of my sweet boy. 


The days have started to meld together, each one mingling the familiar- a glimpse of his sweet smile, a short burst of energy- with the uncharted- increased pain and difficult conversations.  These are hard days.  These are treasured days.  These are days in which I cannot make sense of the pain and the heartache.  And these are days that are teaching my heart to trust in a new way.
  
Frankly, I hate where we are in this journey.  My mother’s heart longs to have Joey near for years piled upon years.  When I allow myself to imagine my days without him, I am overcome by heartbreak so strong I feel as though I am being swallowed up by darkness.  My faith in an eternal Hope is a Constant Companion and Friend but even during times of great sadness, companions and friends stand in the background and allow the grieving heart to do simply that, grieve. 

Cancer Sucks

When Finn was first diagnosed with neuroblastoma, my sister's neighbors reached out to her and offered to help me in any way they could.  Their 5 year old little boy, Joey, has been fighting neuroblastoma since he was 2.  He's been in multiple clinical trials, traveled to Sloan-Kettering in New York and Children's Hospital of Philadelphia, in between which he's a little boy who loves to play with my nephew D, goes to kindergarden and pesters his two older sisters.

He had over two years of clear scans, and then, in 2010, scans showed he'd relapsed.  This week, his parents learned that his cancer has progressed again, and were told that they could consider one more round of chemo, but it would only be prolonging the inevitable.

How can a parent face a decision like that?  And how does a parent explain this to their children, his friends, his sisters?

Children aren't supposed to die before their parents.  Even before becoming a parent, we all know that to be true.  I'm pretty sure that once becoming a parent, it's normal to feel the loss, or impending loss, of a child even more strongly.  But I cannot believe how much this has upset me.  I haven't cried like this since those first nights in the hospital last August, and I don't really know Joey or his parents.  I guess this just brings home that underlying fear that one of Finn's scans will show something bad.

Finn's cancer is totally different - they might as well be called different things, since the behavior of his cancer is/has been so different from that of someone who is older when diagnosed.  But they aren't called different things.  And so while I'm crying for Joey and his parents, I'm also crying for my own fear for Finn.

This week I got in the mail a schedule of all of Finn's planned MRIs.  He's going to get every 3 month MRIs through July, then it's going to go to every 6 months for a few years before changing to scans once a year until he's 7 years old.  Joey never made it out of the every 3 months schedule.  His cancer is that different.

Please say a little prayer for Joey and his family tonight.  I can't imagine how they're facing what they know is coming in the days ahead, and my heart breaks for them.

Post MRI Relief

This weekend was a perfect weekend.

Getting festive with a party hat

Wait, let me back up a bit.  I had thought that after the MRI in October that most of my worry and stress was gone, but judging from the degree of relief I felt after Friday's MRI, I think I was fooling myself.  I know I'll never stop worrying, but every single MRI is going to make me feel better.  And now, here we are, 5 months out and that tumor just keeps on getting smaller and less defined.  I have noticed since August that Finn's right hand is always cooler than his left. I've been worried that this meant something bad, but when I remembered to mention it to Dr. B on Friday, she thought that maybe it was because he was born with the tumor, and it might have been compressing one of the arteries to the arm.  During gestation he had plenty of time to grow more vessels to supply the arm, but because they don't come the normal route, that might be why his hand is cold.  I then went back and looked at all my notes from when he was in the hospital, and saw that the surgeon had mentioned the tumor wrapped around the subclavian artery. So her hypothesis makes sense - and since nothing new has shown up on the MRI,  I'm feeling less worried about that.

So the relief I felt over the weekend put me in a great mood.  And Finn was in a good mood, too.  Saturday we had plans to run errands, and ended up meeting my friend Liz and her older two daughters for lunch.  Finn smiled and giggled and loved Liz's daughter Erin.  We did some shopping, and Finn laughed his way through the grocery store, entertaining me and all the other shoppers while he did.  We played at home, he ate well, he napped well and was sweet and cuddly.  He even sat on the floor and played in the kitchen while I made dinner.

We had Lillian's first birthday party to attend yesterday, and aside from a bad moment with some birthday horns, he had a great time there, too.  I had a wonderful time, too.  It's hard to believe it was a year ago that I held little 4 pound Lillian on my pregnant belly while Finn kicked away like he was saying hi to her.

Lillian 1 year, Finn 8 months

But really, overall there was nothing amazingly special about this weekend.  But somehow everything worked so well, it was just perfect.

Too bad I had to go to work today and that ruined all my good energy from the weekend.  I hate coming home in a bad mood.  I'm going to have to find a way to avoid that in the future.

MRI #5!

We're finally home from the MRI, and everything looks great! 

This was a loooooong morning.  It started around 5:30 this morning when I got up to get ready. (Well, it really started at 3:30 when Finn woke up and stayed awake for over an hour - sigh.)  Finn was up (again) at 6:20, and I lucked out with collecting the urine specimen when he peed while I had the specimen cup in my hand - I caught it midstream and didn't have to mess with squeezing urine out of the cotton balls that had been stuffed in his diaper last night.  I felt like such a bad ass.  LOL

We got to the hospital at 7am, and for the first time had to wait because the anesthesiologist was caught up in another case.  It was after 8 before he went back - and while he didn't smile, he didn't cry, which was good.  He was smiling and flirting with the nurses again when I went back to get him in a recovery a few hours later, and was fairly happy (but hungry) during his abdominal ultrasound.  I fed him after his ultrasound and then we headed over to Dr. Bolen's office.

We didn't make it there until after 11, so we had a little wait, but he did great.  They had balloons in the waiting room, so he was well entertained, and when we went back to the exam room, there were bubbles and toys and a wonderful child life specialist that kept him entertained while they got his vitals and drew his blood.

Finally Dr. Bolen came in and gave us the good news - the tumor is the same size, but actually looks different.  It's less defined, like you would expect if the body was breaking it down.  She didn't see anything at all to be worried about, so we're free of scans for the next 3 months!  Yay!

Thanks again to you all for all your thoughts and prayers.  Lots of love from me and Finn!

The Amazing Goodness of Children

A few of you might remember Miss - she is a SMC who blogged for a short period of time while TTC (and is now the mom to a beautiful little boy!), and someone who I've corresponded with since our miscarriages in 2010.  Not long ago she sent me the most wonderful email, one that I have to share here.  I've been saving this story for my 200th blog post - and then almost forgot to even mention that this is my 200th blog post!  Ok, back to the story...

Miss is the aunt to some amazing children.  And by amazing, I mean A.MA.ZING.   Shortly after the earthquake in Haiti, her nephew Eric was watching a special about it, and asked his mom if they could send some money to help the children in Haiti.  When she said yes, he then asked if it would be alright if he asked for money for his birthday to donate to Haiti.  She thought he meant asking for money from the family, but what he meant was asking for donations from his friends instead of presents at his birthday party.  That started a tradition amongst the children in the family, with his sisters following in his footsteps.

This year Leah wasn't sure what she wanted her cause to be for her 7th birthday.  And then she heard Miss telling her mom about Finn and his cancer diagnosis, and decided she wanted to raise money to help Finn and children like him.  She sent out invitations for her birthday party with a note about Baby Finn and his fight against neuroblastoma, and asked for donations to benefit Alex's Lemonade Stand, an organization that not only funds cancer research, it also helps families with children who have cancer.

Here's what Miss said about the party:

The kids had a great time, and there was lots of applause after the cards were opened. The parents were also very interested in what Leah was doing, and many took the time to read the small info sheet we had set out and to comment on how blessed it made them feel - not only to have healthy children, but to be able to help others. One little girl has asked her Mom if she can pick a cause for her next birthday, and help someone else instead of getting gifts. Her Mom was very pleased to hear that :) Another little girl excitedly told her parents that with "so much money raised, Baby Finn will be all better in no time now!" It was sweet. 

Isn't she beautiful - inside and out!

For her 7th birthday Leah raised $465 for Alex's Lemonade Stand.  An amazing total, but even more amazing is the fact that she did this instead of asking for presents for her 7th birthday.  I honestly couldn't imagine anything good coming out of Finn's diagnosis, but Leah (and her siblings) generosity proved me wrong.

I'm going to make sure that Finn grows up knowing about Leah and her birthday party and I hope he learns to have the same giving spirit that she does.

Oh, in case you were wondering what's the latest with Finn's neuroblastoma, his next MRI is this Friday.  I'm hoping for nothing but more good news to share on Friday afternoon!