Thursday, February 27, 2014

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!




Thursday, February 20, 2014

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 2nd (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:

Sunday, February 9, 2014

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.

Sunday, February 2, 2014

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: