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....