The Best Celebration We Could Think Of

Big News.....

In honor of Cambria being ONE YEAR CANCER FREE (boy do I love typing that!) we're hosting an Alex's Lemonade Stand at our local Giant grocery store!

For those of you who aren't familiar with Alex's Lemonade Stand, they're one of the best charities for pediatric cancer research. One of the ways they raise money (and awareness) is that people all over the country volunteer to sell lemonade, and then we send in our proceeds. You can find out more about ALSF here!

On Saturday March 28th, 2015 (exactly one year from hearing that her scans were clear) we'll be at the Bowie Giant on Annapolis Rd from noon to 4pm. Please come by to show your support, (and tell your friends)

If you want to donate to the cause without having to come all the way to Bowie, or to find out more about your event, you can check out our event page at:

http://www.alexslemonade.org/mypage/1121726

9 Month Scans... AND SHE'S STILL CLEAR!!!!!

We had a great day at Children's last week! Cambria got to see a bunch of her old nurses, and they all met her little sister Aurora. Cambria is still growing and learning and showing no side effects from chemo! The residual mass hasn't changed much, but that's expected at this point. Those inactive cells will probably stay there for the rest of her life... they just won't be cancerous!

Here's a bonus pic of Cambria with her little sis:

6 Month Scans are CLEAR!!!!!!

The residual mass has shrunk even further!!!! Her oncologists are SO encouraged by her response to treatment!! Especially as she's still growing like mad and is showing no side effects to the chemo!

God has been SO gracious to our family!

The Delay

So I know Derek and I are *very* behind on our updates. We have the whole week of tests to cover, as well as Cambria's AWESOME results, and the plan forward. And while Derek and I have both started posts (many times actually) neither of us have gotten there. We talked about it, and I thought I'd share.

We have been SO excited to not have cancer be a part of every day moment that we've sent it away.

We've simply been revelling in not thinking about cancer.

Thing is, we've found the blog really helps us process, and we want to have a record of all of this - including all of the emotions and thoughts at the time, so we need to get there, and we will. But for now, we're going to snuggle our little girl, and take her to meet family for Easter. For one more weekend, she'll just be a kid, and us just be parents.

Thank  you all for reading, and encouraging, and praying for us. It's really made all the difference.

TODAY IS THE DAY!!!!!!!!

Details will come soon... but for now:

Dad: Awesome but draining

It is, at the moment, difficult to focus on any of the events of the last week other than just the feeling of relief to have the last treatments of chemo behind us.  The excited outcry from our friends and family has been amazing.  As much as that does sort of encompass someones perspective the next bit is gonna focus on the negative a bit.  There were reasons to fear the Doxo and the last week has been difficult.  Basically, both the carbo and the doxo mess with her stomach.  So we gave her Sofran on a regular basis, which is the miracle drug that got Debra through her first trimester.  Anyway, she seems mostly better now.  She finally pooped after a 72 hours of not (I vaguely remember a time in my life when bowl movements wasn't appropriate for polite conversation).  She's still not quite back to her usual schedule and she's not eating as much as normal, but each day is better.

On to next steps.  Next week is more of the wondrous Filgrastim on Monday to boost her counts again.  The week after is just some blood work.  In a month we have what promises to be the last long week of this whole thing.   Three appointments first being an MRI, and the second two are the MIBG (that big freaky machine with all the radioactive iodine).  So yeah...fun.
 
The most important part of this is that this cancer is done and so is the chemo.  Oh yeah, and we are planning to visit GA on Easter to see family, and that is awesome too.  Chemo's done our God is an Awesome God.

Dad: One more time, Loud as you can, How does it go?

It's a weird feeling of excitment and apprehension to be so close to the end and at the same time be staring down the hardest chemo session yet.  Kinda like the final boss in a video game.  The reason why we were more worried about this session then others was because it includes the carbo, which messes with baby girl's stomach, and doxo, which REALLY messes with her stomach, and etopo which is actually not hard but it is a three day thing, so we have to keep going back.  Anyway, the day wasn't so bad yesterday.  Only took about 9 and a half hours.  That may sound like a lot but every other time the long day has been more like 14.  Anyway, started off with a trip to dunkin' donuts.  We wanted to celebrate having this be her final session with a gift to the nurses and let me tell you, those skinny little nurses can eat.  Anyway, after waiting for a few hours for the pharmacists to brew up a steaming batch of chemo we finally got started.  We had several nurses come in just to say hi.  I think bribing them with donuts and bagels inspired some of their patronage,  the 18 lbs. 4oz. (that's right kids, she's a giant baby) of undeniable cuteness didn't hurt.  On that particular ADHD distraction: during the check-up portion of the days festivities we found out that she is now 28 in. long.  She keeps getting confused for a kinda quiet 1 year old.  It used to be a kind dumb 1 year old, but she's playing with talking-esk sounds again, so that helps.

Anyway, back on topic: we didn't have to do the pre-chemo fluids, and we only needed to do about 2 hours of post fluids. So that mostly accounts for the shorter time.  So, during the 8 hours during which we hung out in the Pod here is a description of the tom foolery that ensued.  First off we were in Pod 1 which is the one that they've made space themed through some rather well done artwork.  Yeah, they went old school and used paint instead of fat heads.  They also hid their little bear symbol in the decorations periodically.  The pod is divided into 4 smaller rooms where the patients hang out and a central area for the nurses.  The central area has 2 hidden bears.  Our room and two of the other room have 2 bears in each.  The fourth and final room only has 1.  What are you guys trying to do to me.  I probably spent 45 minutes staring at the walls like an idiot trying to find the second bear in their.  Seriously making my OCD twitch. grumble grumble grumble.

In other news, we also played a new card game as sponsored by my sister and brother in law called love letters.  Which I very much enjoyed, although Debra slaughtered me and mom.  I have also dubbed my mother the Great and Powerful Maz.  umm... i think that's all the stories of tom foolery.

We got home and Cambria wasn't feeling well.  This was as expecting but that doesn't make it any easier.  She did better then during session 3.  A couple of little throw ups, but you could see that she's a bit older and smarter then she had been, because she opted to skip dinner and go straight to bed.  Previously there was nothing in the world so important as to convince her to skip dinner.  Anyway, at about 7 we gave her her second dose of Ondenestrum (probably spelled that wrong, but thats her queasy stomach meds).  She then told us it was bed time (via practically passing out down stairs), but gave me hell for the next hour and a half.  I'm pretty sure I fell asleep before she did.  Debra had to poke me in the face for several minutes to get me to wake up and put her down.

That is the last long day of chemo, she will, God willing, never again recieve doxo, carbo, or cyclo.  Our God is an awesome God.

Dad: Four more weeks of winter

So, for those boys and girls that have been following along you know that we had a really difficult time deciding whether or not to continue with the chemo.  So yeah, lots more has happened on that score since last time you heard from me.  First thing was that we decided to go ahead with the third chemo, with the hope of convincing Meany to let us do a scan or something and stopping there.  We also wanted to stop giving Cambria a medication on the weekends that supposed to prevent a certain kind of disease that chemo makes you susceptible to.  We wanted to stop because it seems to make it harder for Cambria to sleep.  We were shot down on both counts.  There just isn't the research out there to give us an idea of what would happen if we stopped the chemo on an odd number.  That seemed like a weird reason to me given that it would have been reasonable to stop at 2 sessions, but it seems when dying from cancer is what's at stack when you're in for a penny you're in for a pound.  On the second score apparently the other preventative medication are just not nearly as effective.

This was a bit of a rough start to the week, but what are ya gonna do.  However, the Good Lord has given me peace on continuing this treatment.  Not that that means I think I know what's going to happen next, I just think this is what He wants to have happen.   My aunt Tami helped with that by being able to be here to help when my mom got sick.  Anyway, my daughter is a trooper, day one was a 10 hour day O' fun and she took it in stride.  Towards the end of the day we had a virtual parade of nurses coming in to see her.  Can't blame them, she's kind of awesome.  It's weird just how tired you get after this considering we, the parents, do actually very little during this process.  I did a couple of hours of hanging out with my wife, mother and law, and aunt, and played on my phone.  Afterwards it feels like I just took a massive test or something.

Anyway, difficulties aside we have two big things to be thankful for this week.  First, my daughter went through three days of chemo, the second 2 were short ones, she didn't even require fluids, and on Friday she successfully slept from 11:30 to 6:30.   This was really a huge answer to prayer, and we were praying.  Then, last night, she did one better and slept from 9 to 5:30.  and the crowds cheer and champagne falls from the heavens (but she doesn't get any...cuz she's a baby).  Awesome thing number 2:  people are so generous I really don't even know how to react.  Thank you.

We probably only have one session of chemo left, she's getting better at sleeping though the night she's moving toward crawling, and people are amazing.  Our God is an Awesome God.

Ok, a decision has been reached

So the decision that we had to make this weekend, was in regards to Cambria's treatment from this point onward. We each wrote blog entries on the night we found out that we had to decide what to do, and we'll post those public later today. The long and the short of it is that while Cambria's MRI came back showing she was responding really well to treatment, it wasn't clear whether or not it was enough to stop treatment. Dr. Meany said she was leaning towards another 2 round of treatment, but stopping entirely and watching it was also a viable option. If you measured her tumor in 2 dimensions, it had not shrunk enough to stop treatment, but if you measured by volume it had shrunk just over 50%. So we had the decision of risking relapse, but getting to stop chemo, or risking possible unnecessary chemo (and its side effects) but being sure the cancer will be eradicated. We've asked the doctor a number of questions, and we've decided that we'll do one more round of chemo, and then do another scan. This isn't how this treatment is normally done, but until they can explain a good reason why these chemotherapy rounds are normally done in rounds of 2, we'll not be subjecting Cambria to the 4th round. (Keep in mind, they may still do this, and we may have another chemo in her future, but we're praying we won't!)

Here's our little girl. We got this shirt awhile ago, but haven't been able to quite face having her wear it until seeing the end of this tunnel:

Dad and Mommy posting together to ask for prayer

We each are writing more in depth entries that we'll post later... but for now we're both writing an update/request for prayers.

Today Cambria had her MRI to assess how well she's responding to treatment, and to see what our plans are moving forward. We went in to today expecting to get a clear "Do A" or "Do B" thing is, our options are a bit more complicated than that.

First off: she IS responding to treatment!! not just responding, but responding well! Her oncologist is very pleased. This is our first prayer request... a prayer of thanksgiving. God has been SO gracious.

Secondly: We have some big decisions to make over the next couple of days. We have her oncologists "suggestion" but she told us both options are more than legitimate. She even specified a couple of small factors that she said would have made her suggest the other course. Thing is, for such a close decision, there are major consequences on both sides. We're not going into details because we aren't looking for advice, input, or even leading questions....however, our second prayer request is for discernment and confidence in our decision.

We thank you guys so much for being there for us in all the ways great and small.

Just for funsies here's a picture of our little girl trying to figure out this whole "crawling" thing:

Dad: Yay!...No?...wait I'm confused

This is a hard post to write.  Then again it's a hard place to be, so I guess we can expect that.  Today we did the scan, which was a bit of a long story, and I might get to that later, but it's hard to focus on that when we got the results unprecedentedly quickly.  The doc is supposed to be on her day off today, but she called us in with the results anyway.

Backstory: she's doing chemo (duh) to reduce the size of her tumor (duh).  If her tumour decreases in size to 50 percent we get to stop the slightly toxic cure and I'm betting there would be much dancing.  Anyway, the doc called back and gave us the good news: it is making great progress, it has shrunk to just shy of the mark.  But wait, their are two ways of measuring size and it has shrunk over 50% in one sense and not quite in the other.  But wait, 50 percent is kind of an arbitrary line anyway.  There are a few more details as well, but the end synopsis is that a very nice lady with a PH.D. two prestigious fellowships and some 14 years of experience in the field came to us and basically told us there were two acceptable paths forward.  Wow, that was a run on sentence... Anyway, so yeah, a highly trained professional told me that she had a "suggestion" about what to do next.

Now, to be clear, I don't want it to sound like I'm focusing on the bad here.  Let's take a moment and gain a little perspective.  Cambria has done 2 sessions out of an 8 session itinerary.  This wasn't created for Cambria, this is a tried and true series.  However, it unfortunately doesn't always get the treated tumors where they need to go.  A lot of kids in similar scenarios have to go on to more harsh treatments and even to some of the clinical trials they are doing in Australia.  Sometimes that doesn't even get the job done.  Out of that long and brutal series of treatments our daughter has barely anteed up and we are already debating on whether she's done or not.  Seriously praise the good Lord.

So yeah, back to the confusing.  We have been given two options.  give our daughter two more rounds of chemo, which are a tid bit more difficult then the last two.  This of course has the risk of side effects, blah blah, we all know to fear the word Chemo.  Down the second path is more of the wait and see tribe.  This of course runs the risk of having the cancer strikes back be the sequel to our little drama.  Of course, no one wants that.

What do you do when both the disease and the cure make you want to hide?  Up until this point everything has been clear set and defined.  Of course we go to Children's, of course we get whatever scan they ask for, of course we do chemo if surgery isn't an option.  I guess we got a little used to the comfort of those of course's.

I would like to ask something of all of you guys and gals reading this.  What I'm asking for is prayer.  Prayer for confidence, and prayer for peace in the decision, and prayer in thanksgiving for all the progress that has been made in such a short time.

It's shrunk a whole bunch, Our God is an awesome God.


P.S. in other news my daughter has made a flying leap in the field of communication.  She has developed a way to convay that she is undergoing the action of defecating.  Just to describe this scenario when my daughter poops she sounds like a pterodactyl in a fight, or what I imagine that would sound like.

Special Delivery for Cambria!

Our family is kind of awesome.  So yeah, we've posted on here before how everything from assistance that we get around the house, to the donations site, to this very blog are gifts from the wonderful people that make up our family.

We got a new piece of awesomeness in the mail yesterday.  It, however, takes a bit of back story.  Something like 14 years ago my Aunt Gwen went through her own bout of cancer and it nearly took her life.  This was a very difficult time for obvious reasons, but she is one tough cookie and she persevered.

While she was battling her cancer, my Paw Paw (translation: Grandpa) gave her a stuffed elephant, because how do you eat an elephant? One bite at a time!

Yesterday, we received a package that contained a present for Cambria, and this note:

 

So yeah, our family is kind of awesome.  Anyway, we're going to leave you guys with a little piece of adorable that is our daughter and her elephant.

Dad: Quarantine supersized

So her numbers were up, which was awesome.  We did chemo round 2, which was less awesome, but you can't complain too much when we are talking about the cure to cancer.  For a couple of days after that we lifted the quarantine a little.  Now that was nice.  We had a couple of friends over for dinner and generally slept a little easier.  I know it's weird to say that we slept easier immediately after having given our daughter this brutal chemo that will result in cardiovascular check ups for the rest of her life...but her numbers were up.

Then we went in to check her numbers this past wednesday.  Which is beginning to be a very "Cheers"-esk experience.  And by that I don't mean that it was the place where everyone knows my name.  No, it's the place where everyone knows Cambria's name.  This time she got her blood drawn with a small crowd of nurses cooing at her...and one playing a guitar.  Considering my daughter has two passions in her life and music is one of them, the guitar was so much more interesting then the needle and she barely noticed the blood draw.

Afterwards we met with Dr. Meany and Dr. Weaver met up with us and, after 5 minutes of doting over her cuteness (cuz she is) they told us that cambria's ANC was 10.  Just for a frame of reference, a baby of her age is normally 1k to 9k.  Before we started chemo numbero uno, she was 1,500.  This means that with the slightest fever we drive straight to the hospital for a 24 to 48 hour stay, because she literally cannot fight off any infection.

Thus and therefore the super quarantine.  Sooo yeah, no more guests, no more trips to the store.  If either me or my wife develops a slight fever we are banished from the house until it's gone.  Luckily this hasn't happened yet.  But we would appreciate prayer that we keep well through this process.

Anyway, enough of the trudge and on to the good news.  Next thursday is kind of a big deal.  We take a peek at Cambria's little piece of Cancer and see how it's doing.  We got to choose, MRI or CTscan (lucky us, right) we're going with MRI.  The reason why this is such a big deal is, if the little wayward piece of nerve endings (her tumor) were to have reduced to 50 percent of it's largest recorded size or smaller, Cambria wins.  By that I mean Chemo is done. The docs think that we are going to need 2 more sessions before this happens, but maybe, just maybe, we will find out that it's done now.  Yeah, we are kinda excited.

No one's sick, and no one's been sick this whole time, and maybe, just maybe, we're done with the hard part of all of this.  Our God is an awesome God.

Dad: Round 2 DING

Again, sorry for being slow, the past few days have been exhausting.  We'll get to that.  So wednesday was chemo session two attempt number two.  We were dreading it a bit more this time then we were last week, because we knew more about what we were facing.  So here's the run down.  The appointment was at 8. 

Step 1: they check her vitals (she grew another cm since last week YAY).  Then a nurse comes in and accesses her port, draws some blood, and starts running fluids through her port for 2 hours.  We did all of this fun during session 1 and yeah, dull but no biggy.  It was only frustrating because they didn't have us in the pod yet so we couldn't unpack all of the crap we brought with us. 

Step 2: they cook up a fresh batch of chemo via backlit doctors around a cauldron.  Somewhere around this point we found out that her ANC count was about 1,000 which is a huge answer to prayer.  For the sense of scale normal person has a count of 1,500 and 750 or more means we can cure cancer today.  ANC has something to do with white blood cell count...I probably should remember more than that...oops.

Step 3: IT BEGINS.  Dr. Meany drops by to say hi and some small talk.  An impressive thing considering she was scheduled to work the inpatient area that day and it was really just small talk.  But then again all accounts say that our daughter is becoming a bit of a local favorite.  Of course that’s only because she's the best one.  Anyway, then we start off with an hour of cyclofsdkf(cough).  She slept through most of this which was good.  That was followed by an hour of carboplaten (so yeah, I'm pretty proud of remembering one of the names) which we amusingly enough thought that the doctors was just giving her more fluids during that time.  And 15 minutes of doxodkjf(cough) a.k.a. the ugly red one.  Then 3 hours of more fluids which was a great time for Canasta (I'm pretty sure Debra cheated, lol). 

We got done around 5:30 rounding out rather long day.

Cambria could, potentially, be done with chemo and there are hundreds of people actively praying all over the world for that to be the case.  Our God is an awesome God.

Dad: Happy Half Birthday to Cambria

Well, these updates are a bit out of date.  Sorry for being slow.  First off that big bad appointment that I was dreading last week didn't happen.  All of that build up and she didn't make counts.  This was frustrating and relieving for me.  The procrastinator in all of us was excited, but at the same time putting it off doesn't change what needed to be done.  Also, despite finding things frustrating I didn't foresee the scary factor, and it scared the crap out of my wife.  She put us all on quarantine.  While this was not the response that I had I have to admit finding out that her count of white blood cells was 210 when a baby her age would normally have a 1500...yeah, that’s understandable.  So things were postponed for 8 days.

Anyway, fun baby updates happened over the intervening time.  She sits up now.  She kind of sat before, but now she can sit up like it's not even hard....until she gets bored.  She seems to think that face planting is a good way to spice things up when there are no more toys to throw.  Don't judge it till you've tried it.  Also we started give her real food.  Every time we give her something new it seems to rock her world a little but she is quite eager.  So far we've tried avocado and squash.  Squash seemed to make her pass out, but sleep eating is funny to watch.

What else...she's in size 3 drapers now.  That's not terrible eventful, but it happened.  Oh, but that does mean that the super useful blue line that indicates when she has and has not peed isn't on this size.  Darn you diaper people!


Umm...yeah, she's awesome (and her counts did come back eventually) and our God is an awesome God.

Dad: Long time no see!

Well, it's been a month.  How ya been?  Yeah, I overate as well.  I started a few posts in the intervening weeks, but this is the first time I've finished one.  Then again this is only 3 lines in, so... wish me luck I guess.

Christmas was great.  We had all of my family over during a sort of long lay over in the middle of their cross country move (they are headed to Rhode Island).   It was a lot of fun spending 2 weeks with my nephew and niece in particular.  Although my 18 month old niece may have "acquired" several souvenirs.  Christmas is so much more special with little ones around then I could have ever guessed.  I'm so excited for Cambria to be old enough to be an active participant.  She does love watching chaos, so 6 adults, an 18 month old and a 4 year old, a big dog and a little scrappy dog.   All of that equalled some high quality entertainment in her view.  Anyway, it was fun...moving on.

As we sit her, enjoying a fake fire playing on the TV we can start to hear the darth vader theme song playing as we get closer and closer to tomorrow.  Tomorrow is the beginning of chemo round 2: the attack of Doxo.  Doxoclyofphohdrene (I think I spelled that right) is the scariest chemo in her regiment.  It's the one that can result in having your heart go out of wack 5 to 100 years after.  So yeah... fun.

Anyway, tomorrow is going to start off with accessing her port and doing a blood draw.  I have hope for this going better then it did last time, which is good, cuz last time it involved a baby screaming for 10 solid minutes.  I'm serious I don't think she breathed during that time.  No fun.  Anyway, that's past and hopefully won't happen quite the same.  After that we will adjourn to one of the pods to hang out with one of the nicest nurses I've yet met Emily. After about an hour we will have the results of the blood draw (to make sure that her numbers are up) and the batched of chemo will be cooked up.  Not to digress, but I always picture a bunch of doctors cackling as the walk in circles around a bubbling glowing cauldron of chemo when I think about someone making it.  Maybe that's just me.  So yeah after that we get to start the chemo.  We will have to bring many bottles.  Well, I hate to be all down side about the plan but that's always the way it goes when your staring down something like this.  In reality we have so much to be thankful for including an amazing Christmas.

Christmas was great and there are people, literally, all over the world praying for my daughter tomorrow.  Our God is an Awesome God.

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.

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

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 

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.