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".