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:
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.
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.
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....
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.
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.
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:
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.
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!
Again, sorry for being slow, the past few days have been exhausting. We'll get to that. So wednesday was chemo session two attempt number two. We were dreading it a bit more this time then we were last week, because we knew more about what we were facing. So here's the run down. The appointment was at 8.
Step 1: they check her vitals (she grew another cm since last week YAY). Then a nurse comes in and accesses her port, draws some blood, and starts running fluids through her port for 2 hours. We did all of this fun during session 1 and yeah, dull but no biggy. It was only frustrating because they didn't have us in the pod yet so we couldn't unpack all of the crap we brought with us.
Step 2: they cook up a fresh batch of chemo via backlit doctors around a cauldron. Somewhere around this point we found out that her ANC count was about 1,000 which is a huge answer to prayer. For the sense of scale normal person has a count of 1,500 and 750 or more means we can cure cancer today. ANC has something to do with white blood cell count...I probably should remember more than that...oops.
Step 3: IT BEGINS. Dr. Meany drops by to say hi and some small talk. An impressive thing considering she was scheduled to work the inpatient area that day and it was really just small talk. But then again all accounts say that our daughter is becoming a bit of a local favorite. Of course that’s only because she's the best one. Anyway, then we start off with an hour of cyclofsdkf(cough). She slept through most of this which was good. That was followed by an hour of carboplaten (so yeah, I'm pretty proud of remembering one of the names) which we amusingly enough thought that the doctors was just giving her more fluids during that time. And 15 minutes of doxodkjf(cough) a.k.a. the ugly red one. Then 3 hours of more fluids which was a great time for Canasta (I'm pretty sure Debra cheated, lol).
We got done around 5:30 rounding out rather long day.
Cambria could, potentially, be done with chemo and there are hundreds of people actively praying all over the world for that to be the case. Our God is an awesome God.
Well, these updates are a bit out of date. Sorry for being slow. First off that big bad appointment that I was dreading last week didn't happen. All of that build up and she didn't make counts. This was frustrating and relieving for me. The procrastinator in all of us was excited, but at the same time putting it off doesn't change what needed to be done. Also, despite finding things frustrating I didn't foresee the scary factor, and it scared the crap out of my wife. She put us all on quarantine. While this was not the response that I had I have to admit finding out that her count of white blood cells was 210 when a baby her age would normally have a 1500...yeah, that’s understandable. So things were postponed for 8 days.
Anyway, fun baby updates happened over the intervening time. She sits up now. She kind of sat before, but now she can sit up like it's not even hard....until she gets bored. She seems to think that face planting is a good way to spice things up when there are no more toys to throw. Don't judge it till you've tried it. Also we started give her real food. Every time we give her something new it seems to rock her world a little but she is quite eager. So far we've tried avocado and squash. Squash seemed to make her pass out, but sleep eating is funny to watch.
What else...she's in size 3 drapers now. That's not terrible eventful, but it happened. Oh, but that does mean that the super useful blue line that indicates when she has and has not peed isn't on this size. Darn you diaper people!
Umm...yeah, she's awesome (and her counts did come back eventually) and our God is an awesome God.
So, to do chemo, they require your counts be at certain levels... Her hemoglobin and platelets, while lowered a little, were passable. Her ANC however (which is a part of your white blood cells) was way too low. I mentioned last week that this was the thing that was super low and had me a bit worried, well it hadn't bounced back enough yet. Normally, ANC is 1500 and above. The 23rd it was just above 1000, so still totally normal. Then on the 30th, it was down at 210. (this is where I freaked out a little.) Now, it's improved to 340, which while better, is not ideal. Nor is it high enough to have chemo (750 or higher)
So, after getting up stupid early (the cold weather had me paranoid about ice on the roads and possible intense traffic) So we left at 6:20 for a 8:00am appointment. Then after a good bit of waiting around (during which we had time to take super cute pictures):
we got vitals (she's 17lbs 7.6oz and 27 inches so still growing like a weed!) Next up we both had a very long and informative discussion with her oncologist, and we got her port accessed. I'll get to the meeting in a second, but if you read the posts from the first port access - you'll now it was *horrible*! Total. Meltdown. So we were all really dreading it! Today it went *amazing*!!! Literally zero crying at all. She started off calm, and she was tired, but hadn't napped yet - she was just processing a nice big bottle and was in that happy food coma state. We laid her back and instead of looking at nothing fun and screaming, we had her watch this cool seahorse toy thing Grandpa Scott got her ( see below) and she was a totally happy camper! A little squirmy, but she never sits still (no comments from the peanut gallery!) How blessed are we??? They hooked her up to the fluids to get her ready while they processed the blood work too.
So then we got to talk with the doctor a long while. One cool thing is that this round of chemo is actually only one day! There's a second day of a supplemental treatment, but it's a shot, not through the port! So that means she doesn't have to come home with the needle still in at all this round! (yay!) The downside of this round, so that there's 3, yes THREE chemo drugs all in one day. So basically, next week we'll just move in to the hospital for a day. We start with getting bloodwork and a physical to make sure she's healthy enough for chemo, then it's two hours of hydrating fluids. Next up is an hour of cyclo, then an hour of doxo, then an hour of carbo, and then more fluids. So basically we'll be moving in to the hospital next Wednesday. They also expect her to be more nauseous after this next round... but the Zofran should keep it in line.
Then the bloodwork came back saying "not today"... so we were all a bit disappointed, but I guess it means the chemo is working, right? And we were also partially relieved - the procrastinator in you really is excited you won't be having to worry over a sick baby tonight. So they unhooked her from the saline... which she had for a good 45 min to an hour... so she'll pee fiercely tonight!!!
The really cool thing that the doctor said, was that while she was doing an exam, the mass was harder to find! Now, it was already really hard to find, and this time the baby was squirmy - but she seemed to think (while trying to not make us too hopeful) that it could mean the tumor is shrinking!!!!!
There's a shot next week *could* be the last week of treatment!!!!! Prayers for that PLEASE! (And of course that her numbers will be high enough next week so she can get what she needs to kick cancer's butt!) Seriously, how blessed are we????
Well, it's been a month. How ya been? Yeah, I overate as well. I started a few posts in the intervening weeks, but this is the first time I've finished one. Then again this is only 3 lines in, so... wish me luck I guess.
Christmas was great. We had all of my family over during a sort of long lay over in the middle of their cross country move (they are headed to Rhode Island). It was a lot of fun spending 2 weeks with my nephew and niece in particular. Although my 18 month old niece may have "acquired" several souvenirs. Christmas is so much more special with little ones around then I could have ever guessed. I'm so excited for Cambria to be old enough to be an active participant. She does love watching chaos, so 6 adults, an 18 month old and a 4 year old, a big dog and a little scrappy dog. All of that equalled some high quality entertainment in her view. Anyway, it was fun...moving on.
As we sit her, enjoying a fake fire playing on the TV we can start to hear the darth vader theme song playing as we get closer and closer to tomorrow. Tomorrow is the beginning of chemo round 2: the attack of Doxo. Doxoclyofphohdrene (I think I spelled that right) is the scariest chemo in her regiment. It's the one that can result in having your heart go out of wack 5 to 100 years after. So yeah... fun.
Anyway, tomorrow is going to start off with accessing her port and doing a blood draw. I have hope for this going better then it did last time, which is good, cuz last time it involved a baby screaming for 10 solid minutes. I'm serious I don't think she breathed during that time. No fun. Anyway, that's past and hopefully won't happen quite the same. After that we will adjourn to one of the pods to hang out with one of the nicest nurses I've yet met Emily. After about an hour we will have the results of the blood draw (to make sure that her numbers are up) and the batched of chemo will be cooked up. Not to digress, but I always picture a bunch of doctors cackling as the walk in circles around a bubbling glowing cauldron of chemo when I think about someone making it. Maybe that's just me. So yeah after that we get to start the chemo. We will have to bring many bottles. Well, I hate to be all down side about the plan but that's always the way it goes when your staring down something like this. In reality we have so much to be thankful for including an amazing Christmas.
Christmas was great and there are people, literally, all over the world praying for my daughter tomorrow. Our God is an Awesome God.
Well, we got news that Cambria's counts had fallen quite a bit on New Years Eve... her hemoglobin is still fine, but her platelets and white blood cells are both low (but as expected with the chemo) So we're all staying in and being super extra careful about hand washing and everything being clean.
BUT we *did* have a nice new year, we lit fireworks in the back yard with all the kids, and had appetizers and drinks for dinner. Once the kids were in bed, we played cards until midnight all cozy in our PJs. Today, we've been playing wii and decorating ginger bread houses, still in the same pjs as we're not going anywhere. :-)
Also - we were being a bit on the frugal side, so we bought what ended up being about half as many Christmas cards as we needed... so here's the digital version:
.JPG)
