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!

Mommy: And what a year it's been...

I know we haven't been updating. Our girl has definitely been keeping us on our toes!!!!!!

She's now 1 year old. She's vivacious and silly and meeting all her milestones. We're so proud of her!
Here are her 1 year pictures:

 Also... our family has some other news that has been keeping us *very* busy....

CAMBRIA IS GETTING A BABY SISTER!!!!!

Apparently things can't be "normal" in our house for too long! She will be almost 17 months old when he arrives this December. We are SO excited, and Cambria is in for a whole new world!

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:

Mommy: Huh... well that was unexpected...

Today has gone a bit differently than we expected. First of all, despite not getting a very good night's sleep last night, Cambria didn't want to go down for her first nap (she's been in a schedule of 3 naps per day) So instead of  "Breakfast" and "Lunch" naps, she took a "Brunch" nap. Thankfully it was a good long 2 hour nap... because she didn't nap again until we were on our way to get her blood work done.

The other weird thing about this nap, was that when Derek went to get her, she had a bit of a shiner... now, random bruises and cuts are a fairly normal thing for Derek and I, and Cambria *does* like to play a bit rough (especially with the rungs of her crib) but with the chemo, "platelets" are instantly on your worry list. Otherwise she's been her normal, playful self... (other than a few extra rounds of diapers for poor Derek, and an extra large lunch of pureed chicken afterwards) Anywho, we were glad that she was already scheduled to get her blood work checked. 

So we left the house a couple of minutes before 2, and got to Children's about 2:30 (Yay for mid day traffic!) We got to see our nurse buddies, and luckily for Cambria, the waiting room was FULL of well kiddos playing and running around while their siblings were treated. Which, I also noticed a LOT of the temporary badges, and today was a Allergy clinic day (the allergy clinic shares the waiting room with the hemotology & oncology clinics) so it was a pretty cheerful room. Cambria had a BLAST watching the other kiddos... like highlight of the week!!! We're SO excited to take her to play groups, and swim classes, and story time at the library!!!!! 

But, first we had to get her blood work done. So we went back, and had our first surprise at the hospital. Cambria straight up screamed bloody murder at the poor lab tech. Thing is, she started crying before he even brought out the needle.... so at first we assumed that she's gotten old enough that she remembers what it means when someone starts poking at your arm... but then Derek pointed out that the lab tech was a man without facial hair!!!! Since sometime in October/November, the only men she's interacted with that didn't have facial hair, she cried at! Yes, the whole being tired of being poked with needles thing makes way more sense... but you never know... 0.o

So we headed back to the waiting room to wait again. See... we had thought this was a lab work appointment and a meeting with the doctor. It turns out, all we had on the books was a lab work appointment.... but when the nurse came out to tell us that we could go and they'd call us with the results, we pointed out the bruise, and then the nurse asked if we had seen any red little dots, and we showed the couple we saw on her face as well. So she agreed it would be good to wait, and she let the lab and her oncologist know we'd be waiting. 

Here's a pic of the little girl hanging out in the waiting room, complete with sad eyebrow bruise, and if you can squint real close you can see a few of the little red dots (the one on the nose is just her scratching herself):

So at about 3:45 or so, a nurse came out saying most of the counts were in, but the platelets said "pending" which means the automated counts came back low, so the technicians were doing it by hand. By this point, I had found a few more of these little red dots (which now I know are called petechiae) on her legs, so I showed these to the nurse as well.  She said that those, especially with the bruise, were pretty good signs that her platelets were low... we just don't know how low yet. So we (sort of) patiently waited until about 5:15 when Cambria's oncologist and nurse practitioner both came out to let us know the results:

1. her ANC is a wonderful 1540, so they gave permission for quarantine to be lifted!!
2. her hemoglobin was borderline... (7.0) they asked us if she had been extra sleepy or had a lowered appetite, or less active in her play, and since she was normal and/or exuberant on all of those subjects they decided against giving her a transplant, and just having us watch her for a drop in energy, appetite, playfulness and/or interest. If any of these occur, we'll take her back for another blood test.
3. her platelets were low. 20,000. (which is their line for whether or not they automatically give platelets... like 20,000 is both the line, and her count) As she had the bruise, and a growing number of red spots (seriously, more showed up while we were waiting - it was really freaky) her oncologist ordered the platelets. 

*sigh* She was so close. To be quite clear, it is NORMAL for children on this protocol to get multiple transfusions and/or platelets. The fact that Cambria hasn't needed any blood products OR overnight stays is a HUGE blessing!!!!! Also, the fact that today was already scheduled  for her bloodwork was a gift. (Traditionally, this would have been a Wednesday appointment) But, as her platelets and hemoglobin have been good this whole time, we just weren't prepared for it.

So, once again we had to get Cambria accessed (which, as she was woken up from a nap to do it, and we didn't have the seahorse to distract her, she was in full meltdown mode during the procedure) then we were off to wait in a pod for some more bloodwork to come back so they could match the platelets with her blood type. Oh, and we got her vitals done... she's now 70cm long and 19lbs 2 oz. (Still growing like a weed!) 

Here's our girl waiting in the pod (not sure if it shows up or not, but she definitely had more spots by this point)

Finally, the platelets arrived, and we got her hooked up. Surprisingly the infusion itself only took about 15 minutes.... but then as we got her deaccessed, she took a long time to clot :-/ This made me especially heartbroken for her, as well as incredibly grateful her doctor made the call to get the platelets. Normally clotting from deacessing the port takes 2 or 3 seconds. This time it took 2 or 3 minutes. 

*sigh*

 So all in all, a very LONG day. We're SO glad her ANC is up though! And that her team at Children's were attentive and made sure she got what she needed!

Now it's time for us all to get some sleep. Hopefully Cambria sleeps better tonight and tomorrow than she did last night or yesterday!

Mommy: A quick THANK YOU!

Thanks to all of you who have donated, I did something pretty great this afternoon... I just payed all of Cambria's medical bills that we have received so far! Mind you, they haven't billed us for 2014 at all yet, but seriously - we would be in a much different situation right now without all of your support!

Mommy: Ding dong, the chemo's done!

Wooo Hooo!!!

You know, not like we're excited or anything... Yesterday was a good day :-) Cambria was feeling better, she ate not quite as much as usual, but she was eating a lot more than she did Thursday. And she was just generally happier. It was so strange to see her be in a bad mood all day, because that's just not her temperament. She wasn't even smiling at the nurses, she was just deadpan. Yesterday she was still a bit off, but she also had a lot of fun. She's been learning how to make "click" noises with her tongue, and yesterday Julia (one of her favorite nurses) came by to say "hi" and Cambria picked right up on how to make "smack" noises with her lips! It was neat :-) 

 She wasn't wanting to play very much when we first got there, but she let me take this sweet picture of her:

 Then we went back for her last bit of chemo (prayerfully for forever)!! She was tired, but didnt' want to nap, so it was a bit of a challenge getting her happy (especially as they have to take her blood pressure every 15 minutes during the etoposide) but she finally fell asleep :-) We had them give her another hour of fluids as it helped her so much the day before, so when she woke up about 20 minutes after the chemo she still had more time there. It was then that Julia stopped by, and I actually *shared* Cambria, so she got to sit on her Maz's lap awhile. Maz was playing this super interesting game on her phone, which Cambria was studying with such EPIC concentration!

And here she is, all unhooked and done with chemo!

And again, playing away once we got home: 

Love this girl!

Now, for what's next.... We go back on Monday for her Neulasta shot. (That's the insanely expensive one that makes her ache from her bones, BUT it also made her counts totally recover 2 weeks after chemo.. so  totally worth it!) Then we'll go back during the week of the  10th for bloodwork and checkup, and then our (hopefully) last long week at the hospital will be the week of the 24th. We go in on the 26th for her MRI, the 17th for the injection for her MIBG scan, and the 18th for the MIBG scan itself. Assuming those tests show what her oncologists are expecting, we'll have her port removed either the following week or the week of April 7th. (Just in time for her Grandma's birthday!)

Also, we just found out that some old BAE employee stock I have from forever ago is worth about 1000 dollars! (which, considering I was hoping for 200-300, we were SO excited!) So we've decided to use that surprise money to fly down to Georgia for Easter so Cambria can meet all of the family that lives there.

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.

Mommy: Day 2 of the last round

Today was hard... little girl has *not* been feeling well. She has actually been refusing food... OUR daughter, not wanting to eat... not a good sign. She was trying to play and stuff, but you could tell she just felt crappy and it was really getting to me.

When we got to children's though, Cambria had a nice little surprise! Someone had dropped off another volley of toys as a donation, so we got to pick one out for her! The youngest one was this neat little doctor playset... it's a bit too old for her, but she's happy to gnaw on the blood pressure cuff for a bit:

Oh! And we think Cambria may be developing a distaste for men who shave!!! The only guy she's known with a bald chin is her Grandpa Jerry, who she hasn't seen since she was 8 weeks old, and she had a guy nurse today who she clearly was not so sure about. (She decided in the end that he was alright) But in talking about it, we realized all the other guys she's met have some level of facial hair! Funny how times change... when I was little it was common for kids to distrust men *with* facial hair!

Thankfully she was a sleepy girl, and napped through treatment again, although, this time she slept with her eyes partially open (which was super creepy because he eyes tracked my movements in her sleep).

Since she hasn't been eating, and she has been throwing up part of what she does eat, we talked with the nurses and they gave her an extra hour of fluids after the chemo. This made a BIG difference. She was playing, and she ate a full bottle before bed, and just seemed much better off. She still hasn't dropped a duce since Tuesday though, so we're trying to watch that (as awkward as that is)

The other thing we've been concerned with, is the drives to and from the hospital. Last time she had the doxorubicin she got carsick even 2 days later. So it's been one of the things we've been praying about, and little girl has slept the ride home each day (Amen!) Today, she had her guitar in her clutches, and if you tried to move it she'd wake up and look at you like "what's wrong with you? zzzz"

Totally Silly Aside

So this is a silly thing, but I've been seeing these ads for Fischer Price's giggle contest for a week our two... and we thought the one of Cambria literally giggling her way through chemo would be a good candidate. Please click this link and vote on her video :-)

http://www.fisher-price.com/en_US/baby/fpbaby/ShareTheJoy/index.html?x=us-en_babies_33701_

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.

Mommy:Last long day of chemo!!!!!!!!!

She did it! She is totally done with Carboplatin and Doxorubicin!!!!!!

Before I talk much about yesterday, I have to start with this gift: This is our daughter this morning (yes, about 14 hours after she finished chemotherapy, and about 10 minutes after she threw up)

Yesterday started off with it snowing. I had been complaining about how for every first day of each round it was either icy or snowing, and then my coworker Rich said something that was pretty neat. He said that Snow, like all precipitation, but especially snow, is cleansing. It pulls the impurities out of the air, and is a brilliant symbol of cleaning away and getting a fresh start. Seems fitting for getting our little girl cured :-) Now, this doesn't mean that I was excited for driving in DC during the snow... this crazy thing happens in maryland where precipitation seems to make the dear people here to entirely forget what all these controls in front of them (brake, gas, steering wheel, blinkers, etc) do, and go careening off everywhere. BUT we made it there just fine. We did have a rather ridiculous experience at Dunkin Donuts as we were attempting to get us breakfast (which we threw out most of) and the Nurses some bagels and donuts (because, quite frankly, they're incredible)  but I won't go into details because I'm in a great mood at the moment!

First we got her port accessed, and we got to talk with her oncologists about the "what's next" plan. As we are planning on this being the last round of treatment, we will wait 26 days to do her MRI and MIBG scans. Assuming those come back as desired, we'll be getting Cambria's port out 1-2 weeks after. At that point we'll go in every 3 months for MRI's for the first year, and then modify it to every 6 months and then just be done! We'll be able to do some lifting of the quarantine after her counts recover from this round of treatment, and she'll be able to play with other kiddos and be totally normal once her port is removed. So we're planning on having some sort of shindig celebrating return to normal kid life when we get that port out of her (no more cyborg baby!)

Her ANC had dropped quite a bit from last week, but it was still *great*! Her hemoglobin and platelets were low, but totally passable, so we were off to the pods for her last long day of chemo!

Thankfully, we got all set up in the pod not long before Cambria's first nap time (oh! That's one glorious development of the last few weeks - Cambria is on a consistent schedule! There are certain times where we know she will be tired and hungry - WIN!!!!) So while we waited for the chemo to be made Cambria was passed OUT (and a rocking a little Freddie Mercury style)

Then Gaye and I switched so Cambria napped on her Maz for awhile while Derek and I played cards.

Finally the Carboplatin was all ready for her, so I snatched up our little girl and we got started! She napped through that first hour, but around the start of the Etoposide little girl woke up and was ready for a bottle and some playtime :-)

Thankfully, once it was time for the doxorubicin (the nasty stuff) it was time for another nap. She slept right on through, and woke up during the 2 hours of fluids that follows. We were out of there by 3:30! That's the earliest we've been done on one of the long days throughout this process! 

Then it was time to face the ride home (which the last 2 times was where she started to feel sick from the chemo, so we were nervous) She started crying when we got into the neighborhood and gagging a little, but we got this lightup mirror thing for Christmas, and it totally distracted her enough to be happy when we got home. (As an aside, this has saved us from quite a few meltdowns - Magic Mirror)

Cambria was clearly not feeling too well, but she wasn't being violently ill either, so we tried to get her to sleep until 7 (when she could take her next dose of anti-nausea medicine). Once we finally got her out, I noticed that she had fallen asleep reaching for and holding onto my hand... so sweet!!!!

She made it until 6:15, which was pretty good... but she did get sick a few times. When she first woke up though, she was a super happy kiddo:

We call this one chemo schmemo

The rest of the evening was a bit rough, as she had to keep laying back to keep from being sick, but she was really tired of being held, and she wanted to go play... so the night consisted of us holding up a variety of her toys and letting her play while she was laying down - thing is she got sick of each of them very quickly as this was *way* less fun than just letting her play on her own.

Finally it was bed time. She was really fighting sleep, but she was so very tired. She didn't eat any of her bottle, so she was hungry but too nauseous to want any. It took a good 30 minutes, but Derek was able to get her to fall asleep, and then sleeping in her room, on her mattress, by herself. So Mommy and Daddy got to sleep in our own bed that night. Unfortunately Derek didn't sleep well... but Cambria slept the whole night through, from 8:30 until 5:30. WAHOOO!!!!! And she woke up SO happy this morning! She smiled and did full body wiggles when I came into her room to get her. She got her medicine and a diaper change, and actually cried for more after her first 4 ounces this morning... then after she drank the next 2 she was so happy, I decided to take a picture:

thing is, while I was checking to see if the picture came out, little girl projectile vomited a good 3 ounces of her breakfast back at me. :-/

But even then, she was in a really good mood! It was right after this that I took the video at the start of this entry. She is only now starting to get hungry again, so we'll see how much she keeps down. Then this afternoon we're off to day 2 - but thankfully that's only the Etoposide (which she usually isn't sick after) 

The only thing is that the Doxo effected her for a few days last time (especially in the car) so please pray that she can keep her food down and stay hydrated!

Mommy: While I'm catching up... 7 months!

On Sunday our little girl turned 7 months old!

Mommy: Another special delivery

So I had meant to post this as well... but one of the great things that Aunt Tami did, was she brought Cambria this *amazing* blanket that the family made for her:

It has her name, and Psalms 139:14 embroidered on it: "I am fearfully and wonderfully made" And then all of her family (that were at Helen for Christmas) signed it for her :-) So special!

Mom blog fail!

 So last week I was really working on catching up with the blog.... and I only got so far as the day before her 3rd round of chemo... As she's about to start her 4th and final round next week... I think I need to just call it a day and post what I have. Thankfully Derek did his duties and posted. I'll throw in a bunch of pictures at the end of the post.

It’s been quite a month so far… and I think I’ve processed enough to share it all.

Things started going a little off plan on Sunday the 2^nd (and no, I don’t mean we ran out of chips for the Super Bowl) Gaye called up and let us know that Bohden (our nephew) was sick and as they were staying together she had been exposed. As she was scheduled to fly down the next day, this was a bit of a hiccup. But Gaye already had a few contingency plans in mind for just this sort of thing, so she called in reinforcements! Aunt Tami lives relatively close (a 5 hour drive… but it doesn’t require a plane, so we’ll call it close). Normally, Tami both spends a lot of time with her young nephews, and works with childcare for BSF, so she’s typically quite the carrier monkey. However, due to TWO snow storms, and a few other things, she had been kept out of both for over a week. We’ve been praying for discernment and confirmation about Cambria’s treatment, and here we saw that God had been preparing Tami to be ready and able since before we knew there was a choice to make. Anywho, so as Aunt Tami is awesome and willing to drop everything to hurry up to us and help us through a week of chemo, she was all set and ready to head up Monday morning. Next up, Cambria was set to get her Bactrim medicine again (groan) so far both of the weekends we had given it to her, she immediately got super grumpy after taking it (she only takes it twice a week to prevent her from catching a specific disease). I was sure it wasn’t making her feel too good, so we called the on call oncologist (say that 10 times fast) and asked if there was something we could have her take instead. She said we could skip the second dose, and she would email Dr. Meany.  The third thing that happened Sunday, was that we got a call giving us an appointment reminder for Wednesday morning… We had Tuesday written down everywhere… Thing is, as amazing as all the staff that we interact with has been at Children’s, the automated appointment service has been… we’ll just say “less than reliable” so we thought we’d call in the morning and get it changed. Next up Derek’s phone went kaput (which was especially a pain because I can’t bring mine in to work) BUT we did find a great vet who kennels cats super nearby our house, so Puck was able to stay with them during Tami’s stay as she’ssuper allergic, and Puck is a LOT of cat. (Thank you Gaye for the idea!) Oh, and there was talk of snow and ice for Monday afternoon (fun!) After all that we watched the stomping that was the football game and went to bed!

Monday morning came around, and guess what – the chemo WAS supposed to start on Wednesday! So we rushed poor Tami up early… but at least I had another day of work that week, and we got to have some nice visiting time with her before the treatment got started. Sprint gave Derek a crazy runaround with his phone (not even going to go there) but thankfully Beth came to the rescue (cue the trumpets) and gave us an old Sprint phone that we were able to activate. So we’ll still need to address the whole phone situation… but not yet >.<

Tuesday Derek thought he was getting sick, but thankfully wasn’t (just really dehydrated)… although he *really* needed sleep and non-taking-care-of-baby time, so it was a really neat perk of having Tami there early, as she was able to take care of little girl while Derek slept it off.

Wow… I feel like I’ve written a full post, and I haven’t even gotten to the hospital yet!


During fluids she was having a lot of fun playing with those ever elusive feet:

But she got to sleeping pretty good :

Since we have started to accept that she'll be immuno-compromised for a longer period of time with the 4th round going to happen... we decided she needed more floor time to work on crawling and just more independence... so we built.....  baby cage!

I *do* share her sometimes during treatment... but only with her dad :-p 

Thankfully the last 2 days are short, easy to get her to sleep right on through them.

Here's what her chemo pole and machinery look like:

 Meanwhile, she's been enjoying her nighttime routine, mostly because of the books :-)

She's also started playing peek-a-boo with us:

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.

Mommy: Wanting to protect against the cancer and the cure

There's an additional post about the forever MRI from this morning. This post is purely about the call we just received from Cambria's oncologist. The line for stopping treatment was that if the tumor had shrunk 50% or more, we could stop. Well going into today, we were hoping we'd get that 50% success and no more chemo would be needed for our little girl. We thought we were reaching for the stars with that hope, especially with how many gifts we've already been given in this journey. But when it's your child, of COURSE that's what you're wanting. And hey, god says prayer can move mountains... so why not pray for this mountain?

We went in to today with this major anticipation, because we would know one way or the other about the next two rounds of chemotherapy. 

Well Dr. Meany just told us that first, the tumor *is* responding to treatment! AMEN!!!!! Not just that, but she was really pleased with her progress! If you measure the tumor in 2 dimensions, the tumor has not shrunk enough to stop treatment, but it's close (AMEN!). However, if you measure the tumor by volume, it *has* shrunk enough to stop treatment (YAY!!!!!!!!!!!!!!!!!!)  This is great news. Remember, the possibility of stopping at 2 rounds was the distinct minority... like barely worth a mention. In fact, I'm pretty sure that originally, the possibility was only mentioned because we asked why an MRI was a part of the protocol after 2 rounds. Oh, and this "protocol" that I keep referring to is an established treatment plan for intermediate risk neuroblastoma patients that is followed all over the world. this established plan is 8 rounds in total. Cambria is only eligible for the 4 (or possibly 2) round options are because she has a combination of like 5 really favorable markers. This has already been a HUGE answer to prayer!

Thing is, now we have a decision to make. Dr. Meany said her recommendation was to do the next 2 rounds just to make sure. That either course of action is a reasonable treatment plan... but the additional rounds was the more conservative while the stopping was the newer thought process on treating this disease, but not well tested. Part of the hesitation, is that apparently they were unable to process a couple of the histologic and genetic markers from the biopsy. Almost all of them were, and it's why they considered it a very successful biopsy and pathology study... but apparently you don't always get it all. With that little bit of uncertainty, is one of the reasons Dr. Meany suggested going through the additional two rounds to make sure Cambria wouldn't relapse. She also said that the fact that Cambria is handling treatment so well is one of the reasons she recommends pressing on as well. No transfusions, no hospital stays, no prolonged sickness, and she's still growing and developing so well. But how many times do we want to beat those odds? Also, she said that if Cambria hadn't been doing so well, she might be recommending stopping treatment. THAT's how close of a decision this is... 

This is mostly really amazing news... but now Derek and I are at a crossroads. Do we give Cambria 6 more days of chemotherapy (and the weeks of low counts, and days of being sick, and risk of all sorts of long term side effects) but ensure that the cancer is gone for good. Or do we wait and see, and watch the tumor, saving her from the increased risk of infection, pain, sickness, but then watch and worry about a relapse. If we do the chemo, and she's cured we'll always wonder if it was necessary. If we've increased her risk of infertility, heart disease, cognitive impairment, digestive issues, dental issues, other blood disorders, organ damage (the list goes on and on) even if the risk is just increased a little bit... did we expose her to that unnecessarily? However, if we didn't do the chemo and she relapsed, or heaven forbid it spread... how could we ever forgive ourselves?

The only scenario that involves zero second guessing is not doing the next rounds of chemo, and not having her relapse. But what a gamble. 

Either answer makes me feel like a coward, and either answer makes me feel like the most brazen and cocky fool...

This is crazy! I mean, this VERY prestigious, experienced pediatric oncologist (who currently has another pediatric oncologist doing a fellowship under her to study these types of pediatric solid tumor cancers) said she has a "suggestion" but both options are valid. We are not prepared to make this decision!

So tonight we're going to make a small public post, basically asking for folks to pray for discernment and confidence. No advice, no leading questions, just prayer for us during these few days.  We plan to post these in depth entries after we've made our decision. If we're going for the next round, we'll be there on Tuesday. 

Mommy: MRI #1

We went into this day expecting a much, much shorter day than it was... Originally I was considering going back into work... that was not an option! So we go there at 7:30 for a 9am starting time. Luckily, Cambria was being patient with her serious lack of breakfast,and preferred naps for the majority of the morning. Next we were taken back to check in, get vitals, and answer a bunch of repetitive questions about there being metal in her body, along with a bunch of others... (Hey, I'm glad their thorough, but some of the questions were funny... no our 6 month old *doesn't* have any tattoos, thank you for asking!)  Apparently Cambria was getting tired of the questions as well because she started realizing that she hasn't had breakfast yet, and this was a serious failure on our part. We got through that process and got another depressingly adorable infant-sized hospital gown.

Then the nurse told us it was usually about 45 minutes, but it may be more like an hour or an hour and a half because sometimes they have to retake images. Then she said we could pick up a little buzzer at the desk, and they'd let us know when she was all done. I was able to take her back because at this point because I had gotten Cambria back to by rocking her, so the anesthesiologist thought we'd keep her that way so she could give her less gas, and still get her under sedation. (The norm is to give the kiddo laughing gas and then the propofol via IV) So after I left her with the doctors, I grabbed the buzzer, which honestly was the same thing that you get at cheesecake factory when you're waiting forever for a table (seriously - why no reservations??) Anywho, so we went to start our wait. After a few minutes, we thought we'd go to the cafeteria and get some brunch (you know, if  3 people eating sushi, yogurt pretzels, half a granola bar, some eggs and grits count as brunch)  

We got back, and expected to be called back any moment.... we had left her at 9:02, and it was about 9:40 by the time we got back, so we thought we'd be called back any moment... then time kept ticking on. Eventually it was 10:35 (I was waiting until and hour and a half, as that was the outside number they had given us) So I went and asked what was going on... I mean hey, they had my baby back there under sedation... I was way on edge!!!! When I went back to ask, the first person I asked responded by asking me to spell Cambria's name, and clearly not up to date on her case... but luckily, there was a woman walking by that apparently runs the place. She knew Cambria's full name, as well as the details of the procedure, off the top of her head. Apparently the nurse had it wrong, while abdominal MRIs can just take 45 minutes, Cambria was in for an abdominal AND pelvic MRI, with 2 IV contrasts, so they had to set 2 IV's in a 6 month old whose had a few IV's in the past few months. This took them a bit more time than usual to get started, and then the procedure itself was more like a one and a half to two hour procedure normally. It made me feel a LOT better to know the boss had this on such lock off the top of her head. So I went back to the waiting room and was able to sit down instead of pacing. We waited another 40 minutes or so, and this time Derek went back to check in on her. This time he was told she was fine, they were just having to retake a few images... At this point it had been about 2 hours and 20 minutes. WAY longer than the 45 minutes we were initially told. I had taken to pacing again, I mean... I knew they would tell us if there was something wrong... but still. Another 20 minutes went by and this time my mom went back to ask. She was told they were having to retake a lot of pictures, and they  were having trouble reading some of the vitals automatically, which meant they had to stop everything and take them manually, and fix the automatic readers. Fun! Finally my table ready-buzzer went off and I did my awkward little speedwalk back to my kiddo. (Basically it's my "I'm not running, what are you talking about" now patented at Childrens's)

 This is when the nurse explained what the issue was... apparently our squirmy worm was still a squirmy worm even under sedation!!! So between her wriggles that caused them to retake pictures, and her wriggles that knocked the pulse sensor off her tiny fingers (which, again, caused them to pull her out of the machine and check her, and then retake whatever picture they were working on) she was definitely a difficult patient. She also took longer to wake up and be herself after this than she was after the biopsy, port placement (with bone marrow sample) or MIBG scan.... I'm wondering if the anesthesiologist got tired of that fal-de-ral and upped the dosage a bit. Here's our little girl sleeping away:

Seriously? those lashes!!!

Anywho, she woke up, and normally after sedation, you have some pedialyte, and then some formula and you can go on home. Well, apparently with the introduction of new foods and tastes, Cambria has decided that both unflavored, and cherry pedialyte are no longer acceptable. She was so hungry she was crying and sad... and when she saw the bottle she'd get SO excited (like flailing limbs and panting) but then when she got the taste of pedialyte instead of formula, she'd spit it out and look at you like "why do you tease me so????" Eventually after a good 20 minutes of unsuccessful attempts at getting her to drink, the nurse allowed us to give her formula. She gave us a look like "Oh thank GOD!!!!" and proceeded to suck down 6 ounces like it was going out of style (holding the glass bottle herself, even all groggy) After she was done, we were allowed to get her dressed and go on home! (She was still a little sleepy though)

All that was left was waiting to hear about the results....

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.

Mommy: 1 week after round 2

We all just got back from Children's for Cambria's weekly check-in... her attitude and look are great. Her hemoglobin and platelets were both above transfusion level (amen!) However, her ANC was lowest yet. Again, normal is 1500, hers was 10. t-e-n. The lowest it's been previously was 210. Hopefully the filgrastim will kick in and help her build back up quickly!

Also, her doctors loved her onesie:

MRI next week!

Mommy: 6 months old!

So our little girl is finally back to being her normal self after a few days of feeling pretty punked. We got to go to church since we figure her numbers were still up (still fending off the grabby fingers of strange old ladies trying to touch her of course) but now we're getting ready to go back on quarantine until we get her counts each week.

As she's feeling better, we also decided to take her 6 month pictures (hey, we're only a little late...)

In other news, butternut squash is apparently a solvent for purple glittery tempura paint.

Mommy: Chemo round 2

Phwew!!! That was a LONG day!

We got all packed up and ready to go to face down what we hoped was going to be another long day at the hospital... After being turned away last week for Cambria's ANC being too low, we were really hoping she would have rallied and we could get on with the process of getting her well.
We left the house about 6:30 in the morning, (after a night of GREAT sleep in her crib! Yay!) and got to Children's about 7:30. We had a pretty long wait in the exam room this time.

But we did get her vitals, and she was up to 17lbs 11 oz, and she grew a centimeter from last week! (70 cm long now) We're starting to wonder if they're giving her "BabyGrow" instead of chemo (just kidding)

Finally they came in and got her port accessed, and once again the magic of the glowing seahorse did its job, and she didn't cry at all!

Oh, and this picture reminds me of how they measure babies height at Childrens: they lay the baby on the paper, draw along line across the top of their head, pull one foot down and mark their foot on the paper, then let the kid go and measure between the lines. simple sounding I know... but WAY easier than trying to get a baby sit still on a measuring tape! (Especially a baby as kicky as Cambria)

Anywho, once she was all hooked up they sent the bloodwork off to check her counts.. they keep telling us the counts take about 15-20 minutes to do... but every single time it's taken 40 minutes

or more ... I keep being like:

Anywho, one of Cambria's doctors came in and talked with us, and did a pre-chemo exam... and here's the really exciting thing:

She said she didn't feel the tumor!

Now, this doesn't mean it's for sure gone, it's a really hard to find tumor in the first place... BUT it means this is working, and it *does* increase the chances that when we go back in 2 weeks that the tumor could be gone! Please pray for this being the last chemo she'll have to go through!

After that super fun news we still had to wait and see if her counts were high enough for chemotherapy. Again, hemoglobin and platelets haven't fallen to much at any point, it's just her ANC we've been worried about... on the 23rd they were 1000, the 30th they were 210, and the 7th they were 340. We needed 750 or above to get treatment, and it was *drumroll* 1000!!!!!!!!!!! Yay!!! 

We decided to still do the shot on the 16th that's supposed to keep her counts from dropping as far, and help them rise faster... but that was music to this worried mamma's ears. 

We still were waiting quite a while in the exam room (which was OK as Cambria had been hooked up to fluids since she got her blood drawn) apparently it was a super busy day, and we were waiting for them to open up pod 1. Once they did we got pick of the quads (I guess that's a perk of being there all day? you get dibs?) So I just realized I haven't taken a picture of how the treatment and infusion rooms work there... Each "pod" has 1-2 nurses running it, and 4 little quadrants that have walls on most sides and a little curtain separating you from the nurses station in the middle. 2 of them have windows with this great deep sill that is *perfect* for changing a baby. They all have 2 comfy chairs, a little table,  a few other basic chairs, and a tv (which we haven't used yet) Here's a picture I found on the interwebs from our same pod, just a different quadrant:

And that IV pole on the right of the picture is what they use to deliver the chemo. 

anywho, we finished up with her fluids and started off on the drugs. First she had Cyclophosphamide , which is the one that makes the fluids before and after so important. It also makes them collect all of her pee... so every time we changed her, we let the nurses know and they took the diaper off to the lab. (Except for the mondo poop... that one we threw out, and they just didn't get that sample. About 15-20 minutes in, it became pretty clear that Cambria wasn't feeling so hot... so we convinced her that naptime was a pretty good idea. (oh, and the tube is still attached to her port on her chest, but we've found if we let it come out of the PJs by the crotch, she doesn't play with the tube)

After an hour of the cyclo, then she got an hour of the carbo, (which was delivered from that smaller box on the pole rather than a bag from the top, so we thought she was getting more fluids that whole second hour, when in fact it was the carbo!) Then the doxorubicin was last (this is the one that gave me the most heebie jeebies) but luckily, since she's on such a low dose protocol, she was only on it for 15 minutes! 

Phwew! At this point it was 2:30pm, and she had 3 chemos done!!!!! Then it was just time for 3 hours of fluids and we could go home! She woke up not long into the fluids, and so we changed a *very* wet diaper, and since she was so well rested, she was up for some really sweet play time with the puppet:

This giggling play time continued for quite a while (like, over 20 minutes) and we heard people stopping into the pod and listening and chuckling, and one woman called in "sounds like SOMEBODY'S sure having a good time in there! Her laugh just make's your heart glad, and I hope she gave a few people who needed to smile something to smile about, even if just for a brief moment.

We continued by playing cards (I whoooooped my mom and Derek and canasta... like wow whooped) and we picked out what we were going to have for dinner, because leaving the hospital in downtown DC at 5:30 would not leave us enough time to get home, preheat the oven, and bake the lasagna we had set aside. 

They gave her another dose of the Zofran in the last 10 minutes of her fluids, and we were all set to go home. We had a good drive home, Cambria played some and napped some, and we picked up some smokey bones for dinner (love that place!) we got home, and Cambria seemed really happy to be there! We put her in her pack n play with her stuffed blocks (pretty much best thing ever) and she started off sitting up and playing with them, and ended up laying on her back playing with them. Then, as always she lost control of the block shaking and threw her last one down by her feet. Then she did something fun; she used her foot to find the block, scoot it to between her legs, pick it up using both of her feet, and lifted it to her hands so she could shake it some more. It was so neat to watch her figure that out!!!!

Then we finished up dinner, my mom went home, and we started to get a little cozy. That is until Cambria started feeling bad...

It was awful.

When I say that, I don't mean she was throwing up really really bad or anything... she was only puking a little.. but seeing this happy little girl look so  miserable, and look up at you with these trusting, confused, and hurting eyes so clearly saying "Mommy, I feel so bad! Why?" She was moaning and gripping on to me and it was horrible.  I could barely stand it. I just kept holding her and rocking her, and willing the clock to move forward to the point where we could give her some more medicine. Derek was pacing and trying to find anything he could do (ideally wrestle a bear or something similar) it sucked. Finally, while I was praying, I was getting to the point where I just couldn't keep on with the same, and while I prayed the sentence "please Lord, just help this child sleep through this, or give me a sign that I should take her in" she instantly went from crying, fussing child, to a peaceful little girl with her thumb in her mouth, falling asleep. There are no words for the relief. I just sat there and cried a little while rocking my little girl. I felt so thankful, so helpless, so exhausted. 

  

Finally it was 9:30 and we could give her some more zofran. The pharmacy's label said every 8 hours, the oncology's doses said every 6 hours, but the oncology nurse said they regularly give it every 4 hours around the clock when a patient is ill.. so we did that. This helped her out at bit and we got set up for bed. And when I say bed, I mean, I was on the downstairs couch holding her ... because crib-shmib, I wanted my baby (with her laying on her back, because any pressure on her tummy made her sick) and Derek went to sleep in the guest bed because it's right near the couch. Gaye got to go up and enjoy the king size tempurpedic. (and when I say enjoy, I'm sure I mean toss and turn a bit) She did pretty well through the night, waking up once not feeling so well... but I did the math wrong at 2am thinking she couldn't get more medicine, but I was able to get her back asleep. And we both slept until morning. (Amen!)

Wednesday she still didn't feel too hot, but not nearly as bad as the night before. Her color was all wrong, and her veins were all dark, and she just looked pretty punked. Still moaning every so often, but also wanting to play. (Seriously, can't keep this little girl down... it both lights up your world a bit and breaks your heard a little too)

Wednesday afternoon we were due back at Children's to get the filgrastim shot (this shot given 24-48 hours after chemotherapy can help your ANC from dropping as low, and help it build back up faster) Thing is, it can make your bones ache because it's asking them to make soo many more blood cells... but it's better than the alternative. Cambria took it like a champ, and didn't cry from the shot at all. She took the shot, and then like 2 seconds later started to make the super sad face, but I picked her up and her daddy sang the first 2 lines to "Rudolph the Red-Nosed Reindeer" and she was super smiley kid again.

We were obviously too busy cheering her up to take a picture of her sad face, but it's really dramatic and in a sad sort of way funny... so I thought I'd google to see if I could find a kid who did it similarly. I can't, but also don't do a google image search for "sad faced baby" it's the most adorably sad thing!

Finally made it through a super trafficy ride home, and a disappointing curbside to-go (as once again, we got home way too late for the lasagna in the fridge) we were finally done, Cambria seemed to me herself again, and we were t-i-r-e-d.

Derek took Cambria to bed (where she slept for at least some of the night in her own crib- Yay!) and Gaye and I each slept super hard (sooooo necessary... by the end of last night I was drunk with exhaustion... there's no way I could have walked a line!)

Then this morning, we all got up, and I headed off to work. I was there for about an hour when Derek called saying that on the way to take Gaye to the airport, Cambria threw up a bunch... *ugh* so I rushed over to them (they had only gotten like 1/3 of the way) and Derek took his mom to the airport, and I took little girl home. She was back to feeling pretty sick. She's eaten, taken more anti nausea meds, and some tylenol (normally when going through chemo it's not allowed because it can mask a fever, but after the filgrastim shot, we get permission to give her tylenol after taking her temperature). This seemed to really help her get comfy enough to sleep, and she's been sleeping it off for most of the day. She was napping on her dad while I wrote 90% of this post, and she just woke up seeming to feel pretty close to her happy self:

Oh, and she turned 6 months old on Thursday... cute pics to come once we're all feeling better!