Mommy: A nice calm weekend (I think I remember these)

So the fam is gone this weekend to look for their new homes up in RI. This means Derek and I are home, with no doctors appointments, a happy energetic little girl, no Christmas shopping/decorating, and no major chores. *gasp* It's been super nice. :-)

Also, Cambria has been playing with the walker toy Derek and I got her for Christmas - and BONUS it's not only a tool to help stand up:

but it's ALSO a teether!

Now we have some tasty snacks prepared, and a Packer game to watch... GO PACK!

Mommy: Christmas!

Merry Christmas everyone!!!!!

Well, Cambria's first Christmas started off a little slow for her, but overall it was a GREAT day! Firstly, I'd like to say that Christmas with little kids is the absolute BEST THING EVAR!! Bohden and Wren were SO much fun that morning! Cambria got to partake a little bit, she actually ripped open the paper on some of her packages. Thing is, today was the day that the doctors had predicted her counts would be lowest, and they were clearly right. She slept from about 8pm Christmas Eve through until about 3pm Christmas Day. She woke up periodically for food, (thanks again to Cara for the breast milk!!!!) but I could just tell she wasn't feeling like her normal self.

Later on in the day, once Cambria was feeling like her normal self, Grandma Peggy had the idea of seeing what she thought of Wren's new piano... I think Cambria was intrigued:

Mommy: First round of post-chemo blood tests and first Echo/EKG

Well this week there was only one trip to children's instead of 4. (yay!!!) Cambria got her counts done, and her hemoglobin was 10.4, and there was another count they used to check her ability to fight off infection, and they said it was just over 1000, which 1500 is considered normal, so it's within a good range for post-chemo. So Cambria got full approval for Christmas Eve service tonight, and if she seems to be doing well we can skip the tests next week and just have them done Jan 7th for her next round of chemo. Then she was off to get her first EKG and Echocardiogram (she slept through half, and grinned through the next).

Last week was so hard, but this weekend and start to the week with the family have been so healing :-) God is so good! I'm so very thankful for everyone that has donated as well... without that I would have spent Saturday, Sunday, Monday and today at work. Spending this time with the family has done my heart such good, I really can't express my gratitude.

Especially when it means I get to capture great moments like this, where Cambria is playing with her big cousin :-)

Merry Christmas everyone!

Mommy: A day of anticipated arrivals

Today is the carrot after a long and scary week.  Firstly chemo is done until the new year YAY!!!!!!!!

Secondly, one of our dear friends, Cara, was SUPER sweet and offered to pump for Cambria... (yeah, wow!) As breastmilk is known to have all sorts of incredible properties (from being easier to digest, to immune system boosting, to all sorts of other healing abilities) we jumped on that offer like whoa. Today, a HUGE box of frozen milk arrived. So now we have something that will help to keep Cambria well and happy through this process. 

Thirdly, the other special arrival today is the rest of the Scholler clan. They have been driving across the country since Sunday, and they finally arrived today! After a grueling traffic filled trip around the beltway, 2 minivans containing Paz (Grandpa Scott), Aunt Whitney, Uncle Tannan, and cousins Bohden and Wren, pulled up to the very excited 4 of us waiting. Now Christmas will really begin!

Mommy: I'll get there, I swear!

OK, so I know I need to post about this crazy week of finalizing and then starting Cambria's treatment plan - but I was SO tired, and now I'm too busy being excited about family getting her in less than an hour!!!! So instead here's Cambria's 5 month pictures that we took this week (one before before and one after chemo - and I bet you can't tell which is which! God is good!)

Mommy: Last day of the first round of chemo

Yay!!!! At this point, after having been through the week of many tests, and then the chemo week... I was getting a bit done with being at the hospital. While we were there, Cambria got her first Christmas present. Apparently, one of the parents whose child is in remission comes by every year with presents for all the children going through treatment. Cambria got this sweet little dolly:

Luckily, this day was also a sort one. Just vitals, hook her up, and then 40 of Eto followed by a 20 minute flush. Emily had maneuvered to be her nurse again, so Cambria got some fun time playing with her, and her Maz (the name for her Grandma Gaye) got her this super adorable elf puppet. We have a super sweet video of her playing with it, but I don't have it on my stuff... so to be added later!

Again, she was a bit nauseous that night, but a little Zofran goes a long way!

Dad: My daughter is a bad ass

Sorry guys, the past few days have been a bit draining and neither me nor my wife got on the computer for a few days.  Anyway, our baby girl has taken 4 doses of chemo in 3 days.  This being the whole of round 1 of chemo.  This time was a little carbo and a bunch of ecto (for those of you that know your chemos).  Anyway the itenerary seems to be very routine.  They had print outs with the whole.  You're child ______ will be rescieving the follow treatement...bla bla bla.  Anyway, the impersonalness of it was surprisingly reassuring.  I don't want them to be trying things out with my baby girl.

Anyway,  tuesday was a long day.  Took a long time to get things started because they made a fresh batch for Cambria.  The concept of which strikes me as a bit weird.  I don't know where I thought chemo treatments came from....anyway.  After an hour in pod 2, which has since become a sort of home away from home, our baby passes out and proceeds to sleep for the next 3 hours A.K.A. all of both doses of chemo and most of the fluids that they gave her afterwards.  Thank you God.

She hasn't slept through a treatment since, but she has been a bad ass.  By that I mean to look at her you would never know anything was wrong.  She still giggles when you tickle her and smiles up when you smile down.  Meanwhile if our Moms weren't here helping out I think both me and my wife would have colapsed by now.  Well not colapsed, we would have gotten the medical stuff done, it's everything else that would've been ignored.  It'd be a shout out to my college days with a balanced diet of pop tarts and quesadillas.   All of that is to say I am not nearly as strong as a 5 month old baby whose going through cancer... go figure.

Anyway, tomorrow we've got two vans full of family that are going to come and stay with us through the holidays and that is going to be a whole lot of fun.

Our God is an awesome God.

Mommy: First round of chemo, Day 2

Wednesday was SO MUCH EASIER than either of the previous two days this week... like whoa. The chemo was already made from the day before, she was only getting the Eto, and there weren't the hydrating fluids afterwards... so we literally got there, took vitals, plugged her up, and then were out of there an hour or so later! i'm pretty sure we were in traffic for longer than we were at the hospital. Cambria didn't sleep through this round, but she was pretty amenable. In fact, she still was hungry *during* chemo:

One of Cambria's favorite parts of this day, was when she got to see one of the same nurses from the previous day; Emily. She is one of those very special nurses that are clearly called to their jobs. Which, for her, specifically is pediatric oncology. She is SO sweet, and has such an amazing heart for these kids. Cambria is totally in love with her, and I'm pretty sure it's mutual. in fact, she tracked us down on Thursday to be Cambria's nurse for day 3 as well.

We came home to a real treat this day... I don't know if I had mentioned previously, but Derek's Grandparents, Aunts, and Uncles all pitched in towards getting us a cleaning service  - so that there was one less thing we'd be having to deal with. Today was the first day they came. WOW what a difference a clean environment makes!!!!! I know it sounds silly, but I could feel my shoulders unknot a little when I came in. Now, the time they had to come was literally our appointment time, so thankfully, our friend Rene agreed to come and help wrangle the dogs and answer the cleaning crew's questions. This way, we literally left head down and shoulders set for chemo, were surprised by a super quick and easy day at the hospital, and came home to a clean house, with a friendly face waiting for us. WIN!!!!!!! Such a set of blessings!

Mommy: The first day of chemo

This was by far the longest day of the week. Cambria first had to be given the "all clear" to start chemo before the lab would "cook it up". While we were waiting, one of Dr. Meany's nurses went over this HUGE binder of information. It had info on the hospital, the oncology department, the solid tumor team, neuroblastomas in general, childhood cancers in general, and a very detailed roadmap of her specific treatment plan. While she as going through this, we actually had a quick visit from a very sweet mom named Andrea. She's friends with Derek's cousin Ashley (the same wonderful lady who started up the youCaring account and helped set up this blog). Andrea's daughter was being treated at the same hospital (small world, eh?) and she was sweet enough to bring some gift cards to the coffeehouse at Children's, a little stuffed moose, and Cambria's first ever balloon. Such a surprise! Cambria was sleeping at that point, but later on the balloon was a BIG deal!

After the binder, and another hour or so of waiting, the lab was finally done "cooking up" her chemo, and they hooked her up (which took so little time with the port, it was kind of a rush). She had the first drug, the carbo, for 40 minutes followed by saline for 20 minutes to clear the line and make sure all the medicine got in. Next up she had 40 minutes of the eto, followed by another 20 minutes to clear the line. Then finally we got to the 2 hours of hydrating fluids. Cambria actually slept through the first two hours of treatment, and the start of the fluids (big YAY!)

 but she was starting to get very bored of this place by the time the second hour of fluids came around.... This is where the balloon came in. Cambria was SO EXCITED!!! She was in absolute awe, and grabbing at it, and petting it, and trying to eat it of course (don't worry, we washed it first... washing a mylar baloon was an "interesting" activity) Then she was all unhooked and we were free and clear to go home. Overall, we got there about 9am, and left about 4pm. It was a LONG DAY.

She handled the carbo/eto combo fairly well... she was feeling nauseous and threw up a bit that night, and it was early for her next dose of Zofran so we called the on-call oncologist who gave approval to get the meds early. PHWEW! Thankfully we still had enough from the partial prescription that we had gotten the night before, although I had to pour it into a shot glass for the syringe to be able to reach the stuff. Oh man, the zofran is apparently as much of a miracle drug for Cambria as it was for me during morning sickness... a couple of minutes after she got her drops, she cried for, ate AND kept down a whole bottle! SCORE!!!! Once she was no longer nauseous or hungry, she was back to being her happy little self once more:

While all of the sick and throwing up was going on, poor Derek was at the pharmacy, because they were having "issues" getting the rest of the prescription to us. Which, FYI: telling a parent whose infant is currently throwing up from the chemo they just had, that the anti-nausea medication won't be ready for a few hours because they haven't gotten around to going through the delivery yet MAY not go well for the pharmacists... but I'll let Derek tell that tale.

Today was hard, but we're all doing OK. Cambria is incredible, and God is ever so faithful! I'll update the blog soon, but for now... sleep.

Dad: The Really Heavy Good News

I said "good news", really thats not fair.  It's great news. Amazing news.  We took a barrage of tests last week, and we got all of the results yesterday.  They all came back negative, as in her cancer has not spread to her lunges, her bone marrow, or anywhere else.  Thank the Good Lord for he is kind.

However, that was covered in the first 10 minutes of about an hour long consultation.  The very next thing that was covered was the 4 chemo therapy treatments that will be used on my 5 month old daughter (she just turned 5 months yesterday).   This will likely take 3 to 6 months and it will be atleast 4 two day sessions with a 3 week gap between them.

My wife being the researcher that she is had about six pages of research about these particular chemos, as they had been mentioned by Doctor Meany before.  Included on that list of chemos was a host of potential side effects. Granted the doses will be small and 3 weeks between sessions is very good, still she will be partaking of something called Doxo in January.  Doxo is by all accounts formidable, in both the good ways and the bad ones.  

So, I've been kind of focusing on the bleak this morning.  I'm in one of those moods where I want to put my shoulder down and push through as many obstacles as appear in my path.  However, yesterday wasn't all bleak.  The meeting started out yesterday with Doctor whatsherface (none of us can seem to remember her name).  She is currently in her fellowship with Children's hospital and seems to be training under Dr. Meany.  She seems to be very competent but a little stand off-ish next to Meany.  Anyway, Whatsherface was talking to us about the tests and such while Dr. Meany was down the hall dealing with one of the loudest children that I've seen since my nephew who is...impressive.  After about 10 minutes Meany pops in and starts covering the plan for chemo.  Another 15 minutes later an RN drops by and sort of stands in the corner for a while.  We though she was waiting to talk to one of the Doctors, but she was there to see us as well, she is Liz (ha, I remembered a name!) she will be around through chemo and wanted to say hi.  Then another RN pushed her way into the now crowded room, we are going to say her name is Jessica (which might be right...possibly).  She's kind of queen of the nurses and wanted to say hi as well.  Everyone seems to be very intelligent and kind, and when everyone is enough to pack out an examination room, it's a good feeling.

The appointment finished up with having her port accessed.  This basically involved poking a needle into a spot just below Cambria's right shoulder where she rescently had surgery.  She screamed her head off for about 15 minutes.  Now everyone thought that it was because of the needle that she was angry.  I know better, she was pissed about being woken up, and she doesn't like being held down.  Anyway, this was no fun and afterward I need a drink (Dogfish head's 60 minute in this case).

This has been a bit more of a serious post, and I wanted to finish with a few things that I'm thankful for:

Our Pediatrician who found this thing when it was so small that Dr. Meany and Dr. Whatsherface could barely find it when they new where it was.

Children’s, for whom we have had more confidence in with every interaction which is no small accomplishment, when I would very much like something tangible to be mad at right now.

You guys, this blog has now been accessed by 1,292 unique ip's in 10 different countries.  It is a huge blessing to know that we are not alone in this.

Also, through a website that was set up by my amazing cousin, Ashley, we have recieved $2,450 with this my wife has been able to stay home from work and attend appointments.  Thank you for my wife's sanity.

Our God is an awesome God

Mommy: The summit

This was the day we had our sit down with Cambria's oncologist about her test results and the road forward. As I posted the results came back showing only the initially found tumor. (SCORE!!!) This means Cambria has Stage 2, intermediate risk Neuroblastoma. We ended up meeting with most of the Solid Tumor team at Children's, (which included a couple of nurses, and a few doctors) where we got a LOT of questions answered, a few more forged, and a game plan set.

The plan is to go through a few rounds of chemo in groups of two until the tumor is down to 50% f it's size. From there, her body will continue to work on the cancer until it shrinks away, or the cells change permanently into normal, non-cancerous cells. (Meaning she'll possibly have a little lump where the tumor is now, but it would be safe.) Because she's only stage 2 intermediate risk, she's eligible for a very well established "low dose protocol" where the rounds of chemo are done in sets of 2, with the first round using . Carboplatin and Etoposide, and the second round uses Cyclophosphamide and Doxorubicin. This second set of chemo treatments *do* scare me, but thankfully the're at really low doses and their scary side effect probability is tied to lifetime cumulative exposure, so even at 4, 6, or 8 rounds, her chances of those side effects are still fairly remote. Here's to praying for only two rounds!!!!!

After the super long meeting with Cambria had to get some blood work done... so they accessed her port for the first time. This, unfortunately, was NOT something Cambria wanted to have happen.

It. was. awful.

There were many reasons why it went as bad as it did, so we're hoping to mitigate some of those in the future. Firstly, she was woken from a nap when she was still tired. Secondly, she wasn't allowed to suck her thumb. This was for two reasons, one her arm would be in the way, and two she had to wear a mask... .see this is a super sterile procedure, (as in, each latex glove is individually wrapped in sterile paper wrappings similar to how bandaids are kept) The mask was the third issue, as she's never had something covering her mouth and nose before and it was very scary. Also, to keep with the sterility of it all, Derek (who was holding her) had to wear a mask so she couldn't watch his mouth (another of the Cambria calming tools) . Fifthly (or however you say that) the mask meant there was no ability to use the ever calming bottle to distract her, and finally she had to be held still (being held down is never something Cambria is at peace with). So basically, she was a screaming baby in full meltdown mode (as in heart wrenching panicked shrieking of doom)  BEFORE they stick her with the needle and drew the sample. Since they had numbed the skin before doing all of this, I'm still pretty sure the needle didn't hurt at all, but boy was it an ordeal... in fact, it was so traumatic for everyone (including the parents and, I think, the nurses) we all agreed it would best to leave her port 'accessed'. Which means she a little tube with a yellow plastic piece that has a needle attached. This yellow plastic piece has a needle which goes into the implanted port under her skin, which has a central line going into a major artery. Yes, that is as freaky as it sounds.  It ends up looking like this:

With the goals of keeping Cambria from messing with this set up, as well as keeping everything clean and dry, we ended up putting that tube in a little Ziploc bag, and then using medical tape to adhere it to her skin, and then layering a series of bibs below and on top of the pajamas. This actually ended up working our really well all week, and on a later day a nurse actually stopped us to look at our system and she said she'd be recommending it to parents in the future. Now, even with it all taped down, we needed to make sure Cambria wasn't "playing' with the access for a variety of fairly obvious reasons. This meant that even though she had previously been sleeping in her own crib at night, in her own room, now we'd be back to taking turns sleeping in the recliner with her. (Much to her excitement) She sleeps so peacefully when she's with us, and we can monitor her hands. She's super pleased with this arrangement, we on the other hand are fairly sleep deprived. This also means we're going to have to break her of this treat, and redo all of those lovely nights teaching her to sleep on her own. Still worth it - we'll just be a bit bleary eyed when this is all over.

Finally we were back to our hometown about 5:30/6:00 pm, so we went to dinner. We chowed down at Uno's while Cambria slept, and then headed up to Once Upon a Child (LOVE that place!) and RiteAid to put in the prescription for her anti-nausea medication (Zofran). The plan was to give it to her before we left for her first chemo appointment the next day, and then as needed afterwards. The thing is, most pharmacies only have the tablet form, while we needed the liquid form. The nurses told us to try a 24 hour pharmacy as they tend to be the only ones with the liquid version on hand. Luckily our RiteAid (the only 24 hour pharmacy nearby) had the liquid, but unfortunately not enough for the full prescription. So they gave us 15 of the 100 mL and told us to come back the next evening for the rest. This meant we had plenty for Tuesday though, so we headed on home for some well earned sleep.

Quickie news

Ok... so today was *exhausting* a lot more so than we were expecting.... Derek and I will post soon, but the overall of news is:

• Cambria's bone marrow and lung CT scans came back CLEAR, and her MIBG only showed the known tumor - so it has NOT spread!!!!! 

• The oncologist is expecting a total of 4 rounds of chemo, ranging from 1-3 days long at a time, with 3 weeks in between. There's a chance that there will only be 2 rounds. 

• We start chemo tomorrow. The first round will be a combination of low doses of Carboplatin and Etoposide

SO blessed :-)

Also - the doctors had a resounding affirmation of how amazing it was that Cambria's pediatrician found the tumor at all - apparently during the marrow extraction, while Cambria was under sedation, the oncologist and her colleague did a manual exam attempting to feel the tumor, and while knowing what they were looking for could barely find it.... AMEN 

Mommy: Humbling thankfulness

So there's one topic I haven't really addressed... Just how incredibly giving so many of our family and friends have been. Not only have we had multiple folks bring us dinner, and Derek's aunts, uncles, and grandparents pitched in for a cleaning service to help out... But SO MANY of you have given us SO MUCH financially! It really is so touching... And such a big load off. With Derek being a full time Dad, and with me being so recently off maternity leave, I'm really only paid for the hours I'm at work, which just since Nov 20th I've missed  5 days, with missing 2 and a half more this week.... Your generosity has meant a major reduction in stress for us! We're still on a definite budget, but I'm no longer worried about cancer AND making rent. So thank you all from the bottom of my heart.

Mommy: Ding Dong this week is done!

I think the look on Derek's face here adequately describes the feeling of this week; exhausted.

The week of many tests is over! We kicked it off with a great conversation with our oncologist on Tuesday. Unfortunately, one of the topics covered in that conversation was why the surgical option wasn't an option for us. Both the higher risk of the placement of the tumor, and the fact that part of it is wrapped around a blood vessel that supplies the kidney. BUT the chemo should do the trick, and the doc is still *very* positive and hopeful that Cambria will handle this with minimal side effects.

This picture was from Wednesday, which was her surgical day. She got a portacath put in, and bone marrow taken from her left and right hips. At this point she was a rage filled child as there was no food to be had. Luckily, if we kept walking, she'd be a happy enough camper.

This surgery was easier than the biopsy in many ways... we knew she responded well with the anesthesia, we knew how the surgical center worked, we knew what it was we were dealing with (rather than this unnamed "mass" in her abdomen, all mysterious and alarming) and finally, there were a lot more positive cases surrounding us (like one little girl who was getting a lens transplant so she could see properly) versus the dire cases we were surrounded with the first time. It was harder, however, because it was SO MUCH LONGER. The doctor was a little late, so we got started about 30 minutes late (which would be fine, except that Happy-go-lucky Cambria minus her bottle is 'le rage baby') the REALLY hard part, was how long it was... That first time, the hour between handing off my little girl, and getting to see her in post op seemed an eternity. This time, it was a little more than an hour before the doctor came to tell us he had finished putting the port in, and now the oncology doctors were taking the marrow sample. Then we had to wait for the sample to be taken, and her oncologist came and told her it went well, and she was no longer intubated, but we still had to wait for the anesthesiologist to finish waking her up and taking her to recovery. (During which Derek and took turns pacing quite a bit, and hovering around the front desk every time the phone rang, and then slumping our shoulders each time she called for a different family to go back to recovery)

But, then we finally got called back and got to see this little angel sleeping away

MUCH calmer than last time, where the nurses were so very frantic! We actually had to wait a good 30 minutes or so for her to wake up before she could eat. (And boy did she eat!) She was a bit swollen in the face, and more groggy than last time, but before long (Many, many, many IV/pedialyte induced diapers and a good family nap time later) we had our happy little girl back again :-) Then, JUST as we were waking up, and starting to try and figure out what we were going to do for dinner, Uncle Jim called, saying he was in the area and wanted to bring us dinner (yay!) So we not *only* didn't have to worry about dinner... but we got to see Uncle Jim too! (Which came with nabbing this sweet shot:)

OK! So now we're onto Thursday, which thankfully was MUCH shorter - in fact, we were out of there before noon, and it was a 9am appointment! (Which, in itself left us MUCH brighter and bushier tailed than the 6am appointments:

Here we just got the CT of her lungs, and then headed back to nuclear medicine to get the injection for her MIBG the following day. This *should* have been much quicker than it was... But first, the folks there move a bit slower... you can tell they don't exactly get a rush... Then the nuclear radiologists enter. They were these two old men, who were kind of good cop bad cop, but Children's Hospital nerd edition. One was this vaguely codgery (which came off as super grumpster next to all the incredibly kind and positive folks at Children's) tall old black man, and the other was this super short, bubbly old indian man, and they really would need a sitcom if it weren't' for the fact that they're super nerds (and not in that funny cool way Big Bang Theory handles it)  And they had the *hardest* time getting one of poor Cambria's veins, so much so that they poked around in her right hand until Derek and I both were about ready to tell them to "back away from the baby!" But they didn't get it, so they busted out this cool vein finder thing, and successfully got it in her left hand. Thing is, Cambria didn't cry at all! You know why? She had a bottle. Yup, let two strange old men bruise her hand trying to find a vein, and then poke her again! She just gave one barely audible whine. Basically, our kid is ridiculous.

Finally, we were to Friday. (Phew!!!!!) Once again, she was on food restriction.... this time she did her grumping at the house before we got on the road. A good 45-60 minutes of screaming at us, and she sadly gave in with sort of a "this may be my last entry" vibe. But then after a nice nap while driving back into DC, we had this happy girl at the hospital (despite no bottle):

Somehow, we managed to beat the traffic in on Friday, so we were a good 45 minutes early.... which meant sitting in the waiting room trying to not watch Beyblades. Finally we were called back, and a really sweet RN explained that for this nursing sedation (rather than anesthesia sedation - which every time she said it threw me off, but she meant anesthesia department) Cambria would eat a fairly gross gel that would slowly convince her it was nap time. Then it took about an hour for them to actually get it and get her falling asleep (Again, the nuclear medicine department was kind of a ghost town, so no one was in a rush) The nurse was really sweet though, we've seen repeats of a few nurses and I hope we get to see her again.  Anywho, Cambria is finally getting more sleepy than hungry, and decides a nap is a rather good idea, so we wheel her back to this massive machine. she gets strapped into place with towels separating  her limbs so as to see clearly what's where. Then she gets set between these big readers, which is SUPER creepy!!! here's a picture of a much older child set between these things:

And they're moved so close, by remote! *shudder* Not our favorite scan :-( For me it was especially so, when the doc put it in place, and then set a program to go, where it would change position every 30 seconds or so around in a circle, and it kept adjusting within an inch of her tiny soft face. 

But once all that was over, we went back to the Radiology recovery rooms (much calmer than the post op ones) where we had the same nurse that we had on Wednesday, and she finally got her bottle and were released!

Here's the best part though - on the way out to the parking garage we ran into Cambria's oncologist! We were still waiting on the CT and MIBG, but we got the bone marrow results back, and she's clear!!!! Yay for cancer-free bones!!!!! 

We had a nice family nap for a good 2-3 hours, and had leftover lasagna (thanks again Jim!) and played cards :-) 

Now this weekend we get to do some more decorating and tidying for Christmas, and Cambria's first trip to see Santa!!!!!!

Dad: Medical Geeks have lairs too.

Today's Friday and we feel like we've been through finals or beaten up or something.  Well, we only have 1 test today and it doesn't take surgery.  Because of this we are all breathing a bit easier then we have for the past few days.  However, the one test that we are doing is the MIBG part 2.  This is where they take a massive machine and scan for the radioactive iodine that they injected into my 4 month and 3 week old baby.  Creepy...yes, but that's what it is.  Anyway, the department that does the scan is called Nuclear Radiology.  Which seems to be the home of the biggest geeks to ever call themselves doctors.  Keep in mind I can have a longer conversation about marvel super heros than is necessarily healthy.  I am proudly a card carrying member of the geek community (Literally, the computer programming competition in Socal gave me a card).  Anyway, as much as I do appreciate all the geeks out there, it does take you off guard to walk through a hospital and then go into a room where D&D would not be out of place.

Back on topic, we spent some time with a very nice nurse while our baby screamed at us over, again, starving her all morning.  After what seemed like about 3 years they brought in the drugs that would put her to sleep.  You would think that you would never be grateful to see drugs that will be used on your baby, but after an hour of screaming a little sedation seems very nice.  This is a light sedative and she drinks it and slowly drifts off, which sounds calming but for our baby girl that means occassional groggy/ loud bursts of screaming.

The scan itself is really rather disturbing.  To properly convey it I think we need to cover some proportions.  My baby girl is roughly 26 in X 8 in X 5 in.  The machine is two massive scanner looking things are about 3.5 ft X 3.5 ft X3.5 ft, and there is one above her and one beneith.  Both comming from a very large circular axis. The procedure goes as follows.

Step 1: place baby on slab

Step 2:  Roll slab between the two massive scanner things.

Step 3:  By means of eye balling it, slowly lower the top slap pneumatically until it is a fraction of an inch from Cambria's nose.  This creeped me right out.  I mean if his thumb slipped at the wrong moment then suddenly the dimensions I specified would no longer be accurate.

Step 4:  The nice geeky doctor pressed "play" and starts wandering around.  The machine proceeds to rotate a couple of degrees, adjusting the width between the two scanners slightly as to avoid crushing our child.  This part really creeped my wife out.  Apparently the software engineer has less faith in computers than I do.


After about an hour and minutes I expect some kind of dinging noise or something, but the geeky man just pulls the slab out and I head off to tell the Grandma's in the waiting room that it's finished (after about 2 hours of waiting they were freaking out a bit).  Then we all wheel over to radiological recovery which was A LOT more calming then surgical recovery.  They had a pretty cloud scene and it was quiet, and several nurses that we've meet during previous tests.  It's probably not a good thing when you know a bunch of people who work at a hospital... Anyway, on our way out of there we met another old friend, the ever nice Dr. Meany.  This was an unexpected random meeting at the elevator and gave us the exciting news that one test came back and her bone marrow is clear of cancer.

Yay!!!!!!!!!!!!!!!!!!!!!!!! Our God is an awesome God.

Dad: The gauntlet so far

I believe that we've already mentioned that our little girl has a list of tests this week.  I've meant to post about each of them in turn, but this is the first chance I've gotten, so...TA DA.  Anyway, here's the play by play:

Day 1 (tuesday):  The Beginning: I believe most of the eastern half of this great nation knows exactly what caused us problems on tuesday.  However, all we had scheduled for that day was a consultation with the ever nice Dr. Meany (our Oncologist).  She opted for a teleconference instead of having us drive through what must have been brutal traffic conditions to get into DC.

A meeting between any professional, my wife, and myself is always a lot of fun for me (excusing the subject matter of this particular meeting of course).  The reason for this is that my wife is one of those people that has spreadsheets for her spreadsheets.  So, in line with her character, she had 4 pages of questions ready to go.  It came very clear that we don't know the stage of the cancer, and the dangers that the stage represents, and that we won't until after the barrage of tests which are why we are heading to the hospital almost every day this week.  So that shortened the list but it was still amusing.  Anyway, Meany was very hopeful about the situation but very confident that CHEMO was the right way to go.  CHEMO is not an acronym, it just feels like the word should always be said with that loud deep forbodding voice.

Day 2 (wednesday):  The longest hour and a half of all time:  I say that, but having already done one surgery with our little girl and having her seemingly no worse for it comforted me greatly.  But still, an hour and a half is a long time to know that your baby is unconscious while they cut and whatever.  She had a port implanted just beneath the right side of her collar bone, and two samples of bone marrow taken from the hips.  Bone marrow is where blood is made...that ones for my uncle.

Anyway, the day started off with starving our child in a fashion that is becoming routine to all of us except for the hungry baby who seems convinced of our torturous motivations.  We had back up this time though, because my mom (who flew in a few days ago, incase I hadn't mentioned that part.)  Took the second shift with the kid, because my sick wife couldn't.  You know, I'm not sure if I mentioned the sick part either.  Let's just say, we're having a hell of a week.  Anyway, fast forwarding to my superman moment while we were waiting in pre-op.   Our little girl hadn't had any formula in about 8 and a half hours, we are still waiting because the surgeons is late, and I through sheer jedi powers mind you, put the crying child to sleep.  Yes, there were very quiet applause.  Anyway, afterwards it took her a while to wake up, but she did, and is just as happy and wriggly as every.


Day 2 part 2:  The worst thing someone could eat:  We have to give our little girl some drops of some weird kind of iodine to prepare her for the final test of the week, which is an MIBG scan (that one actually is an accronym).  It's not signyficant enough at this point to go into much detail, except to say that my daughter seems to think that it tastes like the worst thing you've ever tasted mixed together with old indian food and then left out in the sun for a week.  I don't know if her claims are valid....but there it is.


Day 3 (thursday):  A double header on double time:  We had a CT scan to do today and the first part of the MIBG scan and we got done in like and hour and a 45 min.  This was impressive in my opinion.  There wasn't any food restrictions, but we had her a bit hungry just in case she need sustenance soothing, which just so happens to be extremely effective.  It wasn't necessary for the CT.  We went in there, set her down, covered half of her and most of ourselves with led.  Except, nobodies heads...I’ve always thought a led helmet would come in handy for just such an occasion...anyway.  They took a few shots and we were off at a jog. directly over to the MIBG people, who seemed to be excited that someone was visiting them.  However, it was 2 doctors that administered the RADIOCTIVE IODINE (I need to figure out something other then capital letters to indicate dramatically creapy voice, because thats getting confusing).   Anyway, everyone says that it's harmless but I can't help but shake the feeling this was how the ninja turtles were made.  Well after a couple of attempts they found a vane (the nurses have never missed, I'm just saying).  And then we were on our merry way.

 Summary:  This was a long week, but the fact that we are doing this quickly means we are getting through it quickly.  Our God is an awesome God.

Mommy: Putting in the port and getting that marrow!

We're all awake (technically) and about to be called back for pre-op, and grandma snapped this great shot:

All done!!! Everything went right as rain! Her face is a little puffy & she's groggy, but she's her giggly self!

Dad: the weather before the storm

The world seems a lot more daunting right now.  Nothing has happened that doesn't happen a couple of times a year, but when you are facing down a week like ours it just seems more difficult for some reason.  Anyway, all I'm complaining about is a bit of a stomach bug on the part of my wife and the same snow that has hit the eastern half of our country.  All of that is the normal stuff, it's the 4 days of medical appointments that make it daunting.  Kinda makes you want to sing a song: 1 Doctoral consultation, 2 surgeries a cutting and 3 oncology scan related appointments, 4 days at childrens,  5 GOLDEN RINGS...so my creativity abviously begins to eb somewhere around there.  You guys could probably come up with a better ending.

Anyway, I had a bit of other news come in while I was writting that.  My cousin, who is also helping us with the styling of this website, put together a little donation page: https://www.youcaring.com/helpcambriacrushcancer.  There are a few financial difficulties that come through this process, and it is more amazing than I could express that the youcaring website has been up for something like 3 hours and we already hit $500.

I would like to say thank you for the generosity of everyone that has contributed, you guys are amazing.  Thank you Ashley, I am beyond words.  Thank you God, we don't deserve these blessings.

Our God is an awesome God.

Mommy: SNOW!!!!!

We had our first snow on Sunday (which I, unfortunately, was sick for... but we have another one today! This time with LOTS more snow, and (so far) less ice.

We still weren't excited about the drive into DC in the snow for our sit-down Q&A with our oncologist... but awesomeness: She called and is letting us do the appointment over the phone!!!!!! (SCORE! ) Now I'm home from a VERY early day at work (ie checking in around 4) and this afternoon we'll get to spend the day playing in the snow and cozying up in the house rather than fighting insane traffic in DC :-)

Mommy: On Deck... 4 days in a row at Children's

So, even though our appointments on Friday didn't exactly turn out as planned, we did come out of it with a much clearer image of the week to come:

Sunday (Tomorrow): SNOW DAY!!!!! I'm SUPER excited to hunker down, and have a day in with the family. This will be my 3rd day since the 17th of November where I wasn't at work or the hospital, and I'm SO ready! We'll be spending the day tidying, decorating, and baking while we watch the snow :-)

Monday: The only normal work day - except I have a bunch of stuff to do at my company after my normal project.

Tuesday: I get to go in for the first part of the day, but at 12:45 we have a sit-down appointment with the oncologist. I literally have 4 pages of questions all set and ready to ask about the diagnosis, classification, treatment, and long term effects of all of this.

Wednesday: We don't know the time yet, but Cambria will be back in the surgery clinic. She'll be under general anesthesia again, and this time she'll be getting a portacath put in so we don't have to keep putting IVs in her tiny little veins. While she's under, they'll also be taking a bone marrow sample. They'll call and tell us what time her appointment is Monday or Tuesday (they don't like to assign times to planned procedures like this as there's so many emergency and urgent cases that may take priority)

Thursday: At 10am we'll be at Children's once again, first she'll get the radiated iodine injection for her MIBG scan the following day, and then at 10:30 she'll get the CT scan of her lungs.

Friday: Finally we have the MIBG scan, which is the full body radiated iodine scan. We'll give her regular, non radioactive iodine drops before and after the scan to make sure her thyroid glands aren't tempted to suck up the radioactive stuff, where Neuroblastoma cells will be free to gobble it up. This will show if there are any other "hot spots" somewhere else in her body.

phwew!!!!! After all that I'm pretty sure we'll be ready for a nap!

Dad: The appointment that wasn't

Have you ever had one of those days where nothing seems to make sense until you put the events to the sound track of circus music?  I'm not saying that the nurses made any mistakes or that we made any mistakes.  I'm not sure how it happened but there seemed to be more miscommunications than you could shake a stick at.  Shaking a stick at a miscommunication actually sounds rather difficult... Anyway, we started off by not feeding our pour child after 3am, because the internet said thats how much time we need to give the kid before taking anaesthesia.  We tried to verify this with the pre-op nurse who scheduled the appointment (I hadn't thought to bring it up until my wife made the point), but for some reason couldn't get a hold of the right department, or the right Liz.  I talked to a couple different Liz's, but only to get the auditory version of a blank stare each time.

Anyway, back to the day of, this time we have a bunch of back up in the form of both grandmas, which is truly a combined force to be reckoned with.  Cambria does not successfully sleep through the car ride this time and proceeds to scream at us during half an hour of DC traffic.  The screaming continues off during our trip through the hospital and our time in the waiting room.  Finally after what seems like 2 months later (baby screams have a unique effect on time) the nurse calls us in to weigh her and check her blood pressure and proceeds to say that she does not have surgery today.  She has a pre-surgery screening and can eat at her leisure.  Cambria managed to make it quite clear that her leisure meant immediately and she consumed 4 oz before leaving the hallway, and then spit most of it on my clothes in what I believe was a gesture of protest.  Anyway, this screening brought to light a few things.  One when the lady on the phone said put in a central line, I did not understand quite how invasive that was going to be.  So this brought up a lot more questions than it answered.   So we headed up to the fourth floor because I somehow got the impression that we would also meet Meany again today.  After waiting for an hour we discovered that Meany is not in today.  So we finished the day with a small amount of waiting in the first waiting room again, to try to find out some more information about the central line, got a Doctor's e-mail address, and left.   This rounded up with around 5 hours to accomplish what probably could have been done with a couple of phone calls. Grumble grumble grumble.


Summation:  today wasn't quite as productive as we had hoped, but our God is an awesome God none the less.

Appointments!!!! ... Just Kidding....

We got another call and we're going down to Children's tomorrow morning to meet with the oncologist and get a "port" installed so that Cambria won't keep having to be poked for all the IVs.

Edit: Juuuust kidding - this was a series of miscommunications... all we did today was the pre-op appointment for getting the port put in.

MIBG and 2nd CT scheduled

Well, it looks like we'll be back down at Children's Thursday and Friday next week. Thursday she'll be getting the CT of her lungs (again, just to make absolutely sure it hasn't spread) and the radiated iodine injection. Then Friday, we'll be doing the MIBG scan to look for any other "hot spots".

Dad: The phone call

It's hard to talk about this.  I think my wife already said a lot of it.  Our baby girl has cancer.  The situation is about as hopeful as cancer could possible be.  If this wasn't discovered for another 6 months it's still probably that the prognosis would be very good.  While that makes it easier it's not easy.

Summation: This kind of stinks. A lot of people are praying for our baby girl.  Our God is an awesome God.

Mommy: It's official... Neuroblastoma - aka Holy Cow our baby has cancer

It was the day after the biopsy, and the day before Thanksgiving. Dr. Meany had told us not to expect results until Friday or Monday, so I was back at work and telling everyone that Cambria did great at the biopsy and we shouldn't know more for a few days. Towards the end of my day we got word that the rain was turning to sleet in some parts of the area, so it might be a good idea to head out a little early if you have the hours. Then I got the phone call.

Derek called saying that they had got the biopsy results, and it was cancer.

By this point it was what we expected, and after all of our prayers and having researched the disease, we were feeling OK about it… after all it had great success rates, and we had found it early, and blah blah blah… There’s still nothing OK about hearing that your baby has cancer. Nothing can *actually* prepare you for it. Then when I asked about treatment, the other shoe dropped. Dr. Meany had told Derek that while the images would be going to surgery and we’d get an assessment about surgically removing the tumor, in her experience with other patients having Neuroblastoma in the same place – the risk is generally higher for surgery than it would be for chemo. Chemo. That word echoed throughout me, and I only sort-of processed anything else said after that. Thinking about it now as I write this still gets me all teary. Apparently the chemo she has in mind is a “easier” chemo, and babies tend take chemo easier than adults overall. She might not even feel sick. Each treatment would take 2 days, and she was guessing there would be 2 or 3 treatments a couple of weeks apart. I still haven’t even processed the rest of it – it’s just guesses and I still haven’t been able to get past “chemo”. I’m still clinging to the hope that a surgeon will be happy to remove the tumor safely and we can just be done with this.

Now there’s discussion of the other tests that will happen all to confirm that it hasn't spread at all. Dr. Meany explained that there would be a CT of the lungs, a radiated iodine test called a MIBG, and a bone marrow test. The CT for the lungs is just because the lungs are a more difficult place to treat, and it can spread there, so we want to make absolutely sure she’s clear. The MIBG  test is a full body test. We give her drops of regular iodine in order to fill up her thyroids with normal, non harmful iodine, then the day before the scan is done she’s given radiated iodine, which is something some tumors, Neuroblastoma being one of them, attract. Then they’ll do a full body scan, seeing if there are any other “hot spots” where there might be more Neuroblastoma. Then we’ll continue to give her the regular iodine drops to keep her thyroids full and happy, and not trying to grab and hang on to the radiated stuff. The bone marrow test is because apparently Neuroblastoma can spread to the bones as well, and they just want to check and make sure she’s clear. 

Hanging up the phone, Cathy came rushing over as she could tell I got “the” call. I told her and Rich but honestly I was just sort of wide-eye and in shock. Linda came by, and I told her as well, then for the second time in a week my coworkers prayed with me. I needed this so bad. I decided between the weather and my newly desperate need to snuggle my family I decided it was time to leave. I told my bosses the cliff notes version as I was starting to cry and headed out. I drove home in a bit of a fog – thankfully the weather really wasn't an issue – a little rain, but my route was warm enough that there was zero ice to contend with.

Then Derek and I had to make a series of the hardest calls we've ever had to make. Thankfully we were all aware that cancer was a very likely possibility, but dealing with the realness of it along with this looming possibility of chemo was/is so hard. We talked a little about when and how we would tell everyone else, but it was honestly a daunting task and we just went to bed. What I've found is that talking with folks after they know, and giving them updates really isn't hard. But every time we tell someone that our little girl, our 4 month old baby has cancer… we experience the heartbreak, shock and grief all over again with them. At some points I tried to disassociate myself from it, and sort of ran off the stats and info like a script I had memorized. In fact, after reading over my first couple of posts, I think I was doing a bit of that on here. That led me to post a quick, reduced detail explanation on Facebook the next day. As much as it may  not seem like it, Thanksgiving was really the best day to share this news, as we have SO MUCH to be thankful for. This was found early, if you’re going to have cancer, this is really the one you want to have, Cambria is so young that she won’t have to remember anything from the weeks ahead,  we live close to, and Cambria is being treated at one of the best Children’s hospitals in the country, her oncologist is seriously well qualified , and Cambria is *STILL* not showing any symptoms… she’s a happy, growing, snuggly baby who has no clue what “cancer” is.  Not to mention all the amazing support our family and friends have already shown us. It’s *really* humbling and humbling.

And here's the picture of her on Thanksgiving, sitting on our couch and happy as a clam:

Dad: Biopsy Day

This one is even earlier and my mother in-law is joining us for the festivities.  After striking out for breakfast at Starbucks and Chick-Fil-A, we found ourselves partaking in a McDonald's experience so bad you almost want to applaud them.  Anyway, we got to the hospital and Cambria was still asleep (praise be to God).  She kept sleeping almost till they called her in.  This launched us on one of the longest hours of our lives.  This was for two reasons, first: I, as the stay at home dad, very rarely let her out of my sight.  When I do I know that her mom is with her.  At this moment I was standing next to her mom watching our baby girl disapeer into a door way and we know that they plan on screwering her torso with a long thick needle.  Thick enough to do the job at hand, which is to get samples of a tumor.  We are very thankful for the speed that things have moved to get us to this point.  However, it seems like we'ed need a little preamble or something to prepare for this.

I find myself incapable of merely watching the computer screen that merely displays "in surgery".  I both want more information and at the same time think the play by play would mess with my head.  So I wander a bit.  I went to the cafeteria to get a straw (Ronald forgot to give me one).  Basically, I'm finding excuses to move.  Finally the nurse calls us over and tells us that they got 5 samples and everything went perfectly.  She was waking up now and we would be able to see her in a few minutes.  We went in to find a swarm of nurses buzzing around trying to figure out what was wrong.  Clearly a baby crying that much is in pain.  They gave her some drugs while we fed her and declared that she took to narcotics quickly.

I went back to the waiting room to fill Cambria's grandma in on what's been going on and happened across Meany (still nice).  Who wanted to come in and say a few words.  She said the Cancer word a few more times, and told us about a study that she is a part of.  It will include something like 10k babies and they'd like Cambria to be a part of it.  This is another moment of seeing a blessing in the midst of hardship.  Our baby girl won't remember this, will most likely be cured completely, and will be part of something that will help give more information about a disease that kills babies.  It sucks for us in the meanwhile, but that is pretty neat.

The rest of the day seemed to go rather quickly after that.  We were told that with Thanksgiving coming in two days we would likely hear results the following Monday.

Mommy: Biopsy Day

It was yet another early morning drive into DC, but this time we brought my mom along with us. (And stopped at the worlds most inefficient McDonalds ever on the way, as both starbucks and chick-fil-a had yet to open.) This time we checked into the surgical center, which I have to admit was a lot fuller than I expected for 5:30am. They had a serious system down, complete with a big widescreen tv turned vertical displaying all the ORs, the case numbers scheduled for them, and which stage their at (This way all the anxious families on the waiting room can see when the child is brought into the OR, when the procedure has started, when the procedure has finished, and when the child was moved to recovery.)

Not long after they checked us in we were pulled back to a pre-op exam room where somehow Cambria was being super patient with everyone despite being denied food since midnight!!! (This is generally unheard of as food is by far her highest priority) Through a combination of passing her back and forth between Derek and I, rocking her in the chair, and bits of the first TV we've let her outright watch (a truly horrible episode of Mickey Mouse Clubhouse - seriously, Mickey YOU'RE the Mouse-ke-tool) The doctor, OR nurse, anesthesiologist, and anesthesiology nurse all came in and talked us through the details of the procedure and the post op. They weighed her again, now 14lbs 10 oz,  took a little blood sample and her temperature, and suddenly I was handing her over to the nurse. That happened way too fast for me... we were all talking about what was going to happen, but I somehow just wasn't prepared for her to put her arms out asking for her.

The next hour was the longest of our lives. The waiting room in the surgery center at Childrens' is also one of the most intense places I've been. If you're lucky like we were, and only there for a simple procedure you can't help but humbled and thankful. You are surrounded by people who are truly going through hell on earth. There was one family there who this surgery was their last hope... they had 5 other surgeons all over the country refuse to attempt this surgery, and this surgeon wasn't able to say just how it would go.

Finally the front desk nurse came and told us that the procedure had gone well, they had gotten all the samples they needed and we'd be able to see her soon. Then what seemed like an *eternity* later, the surgeon came back and told us that they had gotten 5 samples, and that the tumor looked homogeneous, (meaning the samples they got should be very telling of what was going on all over the mass) Another couple of minutes after that we were able to go back to post-op and see our little girl :-)

As we walked up, Cambria was screaming her little head off - beet red, crying and kicking SURROUNDED by nurses. There were 3 or 4 of them in this tiny post op room, rushing around, taking vitals, putting blankets on her and trying to soothe her. They were actually ordering pain meds for her as they thought she was in some kind of pain from the biopsy to have elicited such a response... nope! That's just what Cambria does when she's hungry. At 4 months old, she has perfected the Hangry. We popped a bottle in, and she was fine! So the nurses wandered off, dispersing among the rest of the post op bays. About 5 minutes later she was happy and back to sleep:

While she was sleeping off the last bits of anesthesia, her oncologist came down to talk with us. She said that while they don't know if it *is* Neuroblastoma or not, it looks an awful lot like it, and she asked us if we were interested in sending any and all leftover samples from Cambria's treatment in to a national study on Neuroblastomas. So now, it won't change Cambria's treatment plan, but whatever tests are done for her will be sent along and may help another kiddo in the future :-)  The oncologist told us we should expect results Friday or Monday (because of the holiday) but she would call us as soon as she got word. After this, and a good 45 minute nap, it was time to be released and we had this happy little girl staring up at us:

Dad: The day Daddy lived on the phone

This is the day where daddy lived on the phone.  To put it in perspective the four month check up happened on tuesday, the CT scan on Wednesday, now it's Friday.  You will all have to live with the disappointment of not knowing what went on on Thursday.  We were supposed to hear results from the pee test today and we were a little anxious.  Around ten am I got a call from Lisa, a scheduling person for Childrens.  I tried to play it cool like I understood why my daughter needed a operation thinking that the details would come out in time.  In reality I was slightly caught off guard.  After a short conversation we work out a time on the following Tuesday for a biopsy of the tumor.  Only the second time the word tumor had been used, and once I returned to breathing I asked many questions.  I won't bother you with all the details, but the main points are that some level of anesthesia would be used and it was happening in the morning.   She didn't seem to know too much though, she kept the books, but she did assure me that she would put a request in for the surgeon to call me so that I could find out what was going on.  After a quick call to my wife, which scared the crap out of her, I returned to the dishes.

Two hours later I got a call from a pre-op nurse who told me about the things that we needed to do before a surgery which involved general anesthesia.  After another barrage of questions she also assured me that a request would be put in for some Doctor to contact me.  I again called my wife at work and scared the crap out of her.

Another couple of hours passed and Doctor Meany (she is still nice) called telling me that a radiologist had looked at the CT scan and that we were going to have to biopsy the tumor to find out exactly what we are dealing with.  I asked many questions and finally I got many answers.  The Biopsy is not going to be nearly as invasive as we were fearing, and that they could schedule it as soon as next week.  I kind of laughed at her at that point...that might not have been very nice.

Another hour later a very hassled Surgeon called me because of the many requests that had been made for more information.  He described the situation with roughly the candour of: So your kid has Neuroblastoma and we are gonna take a couple pieces of it. 

We have an appointment for a biopsy 1 week after the mass was discovered, our God is an awesome God.

Mommy: The first day of many phone calls

We were hoping to hear back from one of the doctors at Children’s that Friday… the urine test was due to be finished by then even if they hadn’t processed the CT. Derek got a call that morning scheduling a biopsy for the following Tuesday morning. They were going to be able to do a minimally invasive needle biopsy, but she would have to be put under general anesthesia. For some reason they didn’t want to give too many details about time and pre-op instructions, so Derek kept calling back and leaving a variety of messages. The next call he got was Dr. Meany, the oncologist (yes, we see the irony of a pediatric oncologist having the last name of “Meany”). She was surprised that pre-op had already called to make the appointment, I guess she was all prepared to break the news that it would be necessary. She proceeded to have a long talk with Derek and explained that the urine test was inconclusive as the sample had dried up before it could be tested (doh!) but the CT had given them enough justification to go ahead with the biopsy. She said they still didn’t know what the mass was, but the biopsy should tell us a lot more. *gulp* we were so hoping that they would just write all of this off saying “oh it’s just a cyst” or some such… now there would be a biopsy and general anesthesia… 36 hours before we were just on our way to a regular 4 month checkup.
 

So as Derek was calling our parents and his sister updating them all with the news, and meanwhile I was still at work trying to focus, somehow, on code. Luckily, my current team is full of believers, and Cathy, and Linda especially were being seriously supportive. I decided to talk to Steve, who had unfortunately recently lost his wife to a long battle with cancer. I knew it would be hard, but he was the only one at work who had recent experience with biopsies and I had a few questions for him. So I asked him if he would be OK to talk about some of his experiences through his wife’s treatment process, and he agreed. When I told him what was going on he stopped and just started to pray with me. (LOVE this team!) I was hoping to find out timeframes on processing the biopsy information. His wife had 2, one that took 2 days and one that took 3 weeks. So I was hoping for the 2 days, as I am *not* a patient woman, and waiting 3 weeks to find out what was going on with my little girl would be torture.

Finally Derek got one last call – this one was from the surgeon performing the biopsy. He was clearly confused as to why he was needing to be on that phone call as he wasn’t an anesthesiologist so he didn’t know the type of anesthesia, and it was a fairly routine procedure. He *did* tell Derek though, that they were “fairly confident” that the mass *was* Neuroblastoma, and the biopsy was pretty much just there to confirm. This was a hard sentence. I was driving home when Derek told me. We spent most of that phone call not even talking – just periodic thoughts. As much as there were hints that this may be it… hearing that the doctors were pretty sure your infant has cancer will slap you in the face. Finally I was home and able to snuggle my little girl and my husband. Next we had the round of phone calls to make letting folks know. Thankfully by this point, there was already a growing number of people praying for our little girl and us, because somehow we were managing to keep functioning. One big factor is just how happy and thriving Cambria is… it’s almost impossible to look at this child and think “sick.”

Thankfully, my boss had approved for me to frontload a few of my hours so I started working weekends in order to not have to take PTO for her appointments. That weekend I worked both Saturday and Sunday, but only a total of 9 hours… it was really hard to leave her and go in, so I kept cutting it short.

Dad: Our First Trip to Children's

So we are driving to the Children's National Hospital at like 4:30 am.  As much as the time is not...preferable, I give my wife credit, because she took care of the midnight feeding (midnight was the last time the baby girl would be able to eat before the exam at 7:30).  It's been roughly 12 hours since we found out that there is an unidentified mass just above our daughter's kidney.  Armed with Starbucks we charge the mechanized armies that make up DC's traffic.  45 minutes and one lap around the hospital we figure out where to park and wheel our still sleeping (thank God) child up to the surgery waiting room.

Skipping past the next hour and a half where our hungry oscillated between screaming and sleeping.  We were led to a little room where we were to give Cambria some contrast slowly over the course of an hour.  Cambria ate and fussed, but due to the combination of holding, rocking, singing and talking we were able to keep the little ball of angry at a perpetual simmer.  The nurse however did not have the perspective of just how bad Cambria is when she isn't getting what she wants and frets about it every few minutes.  He proceeds to reduce her wait time by 5 minute increments until it rested at 40 minutes.  We were amused to hear the tech's complain about this breach of protocal, but the test went well despite it.  Cambria slept as if she were on my shoulder (praise be).

Once all was said and done the nurse told us to go home and wait a few days for results.  However, hearing this our pediatirician bristled (we like our pediatrician) and we got a call 45 minutes later by another Doctor I hadn't heard of telling us to meet her in some waiting room for an unofficial discussion of Cambria's results.  After a bit of an adventure negotiating the complicated halls of that particular hospital which seems to have similar rules of directions that might be employed on the Tardis.  Ok we found the department and you have to take a moment when you realize that your about to walk your baby into a room that has an arrow pointed at it with the words "Cancer Center".   After me and my wife managed to breath again we went and they told us two wait for what was being labled as tests.  This whole thing felt like the medical version of meeting in an abandoned garage, and I mean that in the fondest possible way.  A short wait later one Doctor Meany (I swear she's very nice) comes in and has us follow her as she looks around for an empty room.  She then explains that she glanced at our CT scan and that the mass in Cambria's stomach greatly resembles a Cancer called Neuroblastoma.  She proceeds to explain in admirable detail (considering this was completely off schedule and she has a very busy profession) that this is a very treatable form of Cancer and that she has a bunch of experience with it.  She said a great many encouraging things, however the same four words kept replaying in my wife's head and mine: "your daughter has Cancer".

In summation:  Over the course of 24 hours we have had a checkup, sonogram, CT scan, and meet with a specialist.  Our God is an awesome God.

Mommy: Our first trip to Children's

The next morning we fought our way through DC traffic and got to Children's National, which is HUGE by the way! It makes sense as it's one of the best pediatric hospitals in the country. Cambria did really well with drinking the contrast:

 and even did pretty good getting the IV...the only thing that really upset her was the lack of formula. The contrast calmed her enough that she was able to sleep through the CT, which made any sedation unnecessary. Then she was allowed her formula and all was right in her little world. The radiology folks tried to send us along our way, but we hadn't heard more from our pediatrician, so we called her, and she said to “hangout for a little while, she was working on something” So we took a stroll around the hospital, which Cambria thought was a BLAST as there were lots of strangers to coo at her and tell her how adorable she was (her favorite activity next to eating)

Then we got a call telling us to meet someone up in *gulp* oncology. Now, this wasn't a formal appointment, it was just something our pediatrician was able to rig... but this really sweet doctor named Dr. Meany came out, and had us follow her back where she was able to wrangle a room for us to talk in. There she told us that she only got a "quick glance" at the CT so far, and it could be a number of things, but worst case, if it *was* cancer, it had a lot in common with something called Neuroblastoma, which luckily is super treatable and they can make it "gone for good." She also did a quick exam, and she told us that it was "shocking and impressive" that our pediatrician had noticed the mass in such a happy baby with no symptoms. Now, as much as everyone was saying "we don't know what this is", the fact that the only possibility they named was cancer had definitely freaked us out.  

While we were there, she also wanted to start a urine test... which for a 4 month old is a pretty funny process. You literally put an absorbent pad in her diaper and hope you have good timing. That's it. (Very complicated and technical procedure!)

The only thing for us to do at this point, was to go home and wait for the doctors to look at the CT and get the urine results. 

Dad: Cambria's 4 month Checkup

So I realize that everyone knows what a check up is, but I'm going to describe it anyway just to point out my perspective going into my daughter's check-up on November 20th.  You go see the nice doctor with peeling Disney characters on the walls, she tells you that everyone is healthy and sends you on your marry way.  If it wasn't for the immunizations it be a bit of a waste of time.

Anyway, we go to her 4 month appointment, Cambria decided that she wanted to eat right before, so I'm running a bit late...whatever.  The nice nurse weighs her and, shocker, she's massive.  I don't mean like sumo baby, but large none the less.  The nurse leaves and her pediatrician (Dr. Anlage) pops in and does the usual routine.  We love our pediatrician, because she's amazing. ((Ok, side note, I have ADD and as a result you might find some of my writings slightly...scattered.))  So, she pokes around Cambria saying the usual: "heart beat sounds good", "yeah your a happy little girl" which is mainly cause she giggles a lot "what's this?".   At which point me and my wife do a triple take, because that last one wasn't on the expected list.  She spends the next minute or two identifying each organ in turn in the area and recognizing the fact that there seems to be something new...what? new? what?  She gives us the this is probably nothing spiel but we should get a look at it with a sonogram.

So after Cambria got a couple of immunization shots we left the office and called the sonogram people. Before leaving the building we gave a call to the sonogram place (which happens to be 5 doors down the hall).  I told the nice lady that we needed a sonogram, and we were in the area if they had a moment.  I was rather shocked to find out that they did, so we headed over and less then an hour after my baby girl's examination we were preping her for a sonogram (praise The Good Lord).   I go back and forth from freaking out and figuring that this is nothing really significant just some i's to dot and t's to cross.  However, when we looked at the sonograms computer interface and seeing that they took almost twice as many pictures of Cambria's stomach than they had the other clients of that day.   So after Cambria freaked the nice tech's out because of how...angry...she gets when she's hungry (they confessed to thinking that they were torturing her), we headed back and saw our pediatrician.

I know this is long winded, but it was a long 2 hours. Anyway, the nurse put us in the Cars room and we waited for what I'm pretty sure was an eternity (maybe 10 minutes) for Anlage to come back and tell us what the sonogram discovered.  She tells us that they found it, it is weird and we need to go to Children's National in DC for more tests.  Which is, again, not what a parent wants to hear.  Anlage calls, gets us an appointment for a TC scan for 18 hours later.  It's simultaneously scary and comforting when Doctors move quickly.

In summation: Our Doctor found a very small thing inside a very small girl with nothing but the use of her thumb.  We got a sonogram and scheduled a CT scan in less than 2 hours.  Today our God is an awesome God because he gave us Doctor Anlage.

Mommy: Cambria's 4 month Checkup

This all started at her 4 month checkup on November 19th, when her pediatrician noticed something 'odd' in her abdomen during the normal exam. She gave us an order for an abdominal sonogram and told us to make and appointment. There happened to be a radiology lab in the same complex, and when we called we mentioned that we were in the building in case they had availability then. It just so happened,they had a bit of time between patients and they would see us immediately. They took quite a few images, and then sent us back to our pediatrician. This was where Derek and I started to get a bit nervous. We went back into one of the exam rooms, and a few minutes later Dr. Anlage popped in and explained that the sonogram showed that there was a mass about 6 cm long on her left side. She said there was no way to know yet what it was, and that she was on the phone with Children's National Medical Center in DC "working her way up to the boss" to get us a CT appointment for the next day. After she got through she told us that we may be there for an hour or two, or we may end up seeing specialist after specialist so we should be prepared to be there all day.

Also, Cambria has gotten SUPER interactive by now, so this video was literally taken at this appointment, after the nurse came in to weigh her, but before we saw her pediatrician:

How You Can Help

We are still working out the logistics of how this whole thing works. For now, here's how you can help:

First of all, pray. We know the Lord loves Cambria even more than we do, which feels almost impossible and seriously comforting.

Secondly, head over HERE to our YouCaring page  and donate (or donate below). At just 4 months old, Cambria is sure to amass serious medical bills. We are not exactly sure of how much everything will cost after health insurance, but we know there will be a financial burden on the family. We will also have to be out of work through some of her treatment and there are standard bills that will still need to be covered.

There's no other way to say it, this sucks. But her parents have been blessed beyond understanding with all the things that have happened that increase Cambria's chances of being done with this as soon as possible, with as little pain as possible.

Our Story

Cambria was a normal, happy 4 month old going to her 4 month checkup when our world changed.

This was not a story we expected to be a part of. When this all started we still thought pediatric cancer was something rare - something from books and TV. 

We didn't even realize babies could have cancer.

What Cambria has is called a “Neuroblastoma”, the most common infantile cancer. I'm updating this page now that Cambria is done with treatment, and approaching one year of clear scans. We have been SO blessed!

Throughout this process, we (her mom and dad) have kept this blog. For most events we have kept record of from both of our perspectives. To see how this unfolded for us, here are the first few entries for each of us:

Mommy's Perspective:

1. 4 Month Checkup
2. Our First Trip To Children's
3. The First Day Of Many Phone Calls
4. Biopsy Day
5. It's Official... Neuroblastoma - aka Holy Cow Our Baby Has Cancer 

Daddy's Perspective:

1. Cambria's 4 Month Checkup 
2. Our First Trip to Children's 
3. The Day Daddy Lived on the Phone 
4. Biopsy Day
5. The Phone Call