So I know Derek and I are *very* behind on our updates. We have the whole week of tests to cover, as well as Cambria's AWESOME results, and the plan forward. And while Derek and I have both started posts (many times actually) neither of us have gotten there. We talked about it, and I thought I'd share.
We have been SO excited to not have cancer be a part of every day moment that we've sent it away.
We've simply been revelling in notthinking about cancer.
Thing is, we've found the blog really helps us process, and we want to have a record of all of this - including all of the emotions and thoughts at the time, so we need to get there, and we will. But for now, we're going to snuggle our little girl, and take her to meet family for Easter. For one more weekend, she'll just be a kid, and us just be parents.
Thank you all for reading, and encouraging, and praying for us. It's really made all the difference.
Today has gone a bit differently than we expected. First of all, despite not getting a very good night's sleep last night, Cambria didn't want to go down for her first nap (she's been in a schedule of 3 naps per day) So instead of "Breakfast" and "Lunch" naps, she took a "Brunch" nap. Thankfully it was a good long 2 hour nap... because she didn't nap again until we were on our way to get her blood work done.
The other weird thing about this nap, was that when Derek went to get her, she had a bit of a shiner... now, random bruises and cuts are a fairly normal thing for Derek and I, and Cambria *does* like to play a bit rough (especially with the rungs of her crib) but with the chemo, "platelets" are instantly on your worry list. Otherwise she's been her normal, playful self... (other than a few extra rounds of diapers for poor Derek, and an extra large lunch of pureed chicken afterwards) Anywho, we were glad that she was already scheduled to get her blood work checked.
So we left the house a couple of minutes before 2, and got to Children's about 2:30 (Yay for mid day traffic!) We got to see our nurse buddies, and luckily for Cambria, the waiting room was FULL of well kiddos playing and running around while their siblings were treated. Which, I also noticed a LOT of the temporary badges, and today was a Allergy clinic day (the allergy clinic shares the waiting room with the hemotology & oncology clinics) so it was a pretty cheerful room. Cambria had a BLAST watching the other kiddos... like highlight of the week!!! We're SO excited to take her to play groups, and swim classes, and story time at the library!!!!!
But, first we had to get her blood work done. So we went back, and had our first surprise at the hospital. Cambria straight up screamed bloody murder at the poor lab tech. Thing is, she started crying before he even brought out the needle.... so at first we assumed that she's gotten old enough that she remembers what it means when someone starts poking at your arm... but then Derek pointed out that the lab tech was a man without facial hair!!!! Since sometime in October/November, the only men she's interacted with that didn't have facial hair, she cried at! Yes, the whole being tired of being poked with needles thing makes way more sense... but you never know... 0.o
So we headed back to the waiting room to wait again. See... we had thought this was a lab work appointment and a meeting with the doctor. It turns out, all we had on the books was a lab work appointment.... but when the nurse came out to tell us that we could go and they'd call us with the results, we pointed out the bruise, and then the nurse asked if we had seen any red little dots, and we showed the couple we saw on her face as well. So she agreed it would be good to wait, and she let the lab and her oncologist know we'd be waiting.
Here's a pic of the little girl hanging out in the waiting room, complete with sad eyebrow bruise, and if you can squint real close you can see a few of the little red dots (the one on the nose is just her scratching herself):
So at about 3:45 or so, a nurse came out saying most of the counts were in, but the platelets said "pending" which means the automated counts came back low, so the technicians were doing it by hand. By this point, I had found a few more of these little red dots (which now I know are called petechiae) on her legs, so I showed these to the nurse as well. She said that those, especially with the bruise, were pretty good signs that her platelets were low... we just don't know how low yet. So we (sort of) patiently waited until about 5:15 when Cambria's oncologist and nurse practitioner both came out to let us know the results:
her ANC is a wonderful 1540, so they gave permission for quarantine to be lifted!!
her hemoglobin was borderline... (7.0) they asked us if she had been extra sleepy or had a lowered appetite, or less active in her play, and since she was normal and/or exuberant on all of those subjects they decided against giving her a transplant, and just having us watch her for a drop in energy, appetite, playfulness and/or interest. If any of these occur, we'll take her back for another blood test.
her platelets were low. 20,000. (which is their line for whether or not they automatically give platelets... like 20,000 is both the line, and her count) As she had the bruise, and a growing number of red spots (seriously, more showed up while we were waiting - it was really freaky) her oncologist ordered the platelets.
*sigh* She was so close. To be quite clear, it is NORMAL for children on this protocol to get multiple transfusions and/or platelets. The fact that Cambria hasn't needed any blood products OR overnight stays is a HUGE blessing!!!!! Also, the fact that today was alreadyscheduled for her bloodwork was a gift. (Traditionally, this would have been a Wednesday appointment) But, as her platelets and hemoglobin have been good this whole time, we just weren't prepared for it.
So, once again we had to get Cambria accessed (which, as she was woken up from a nap to do it, and we didn't have the seahorse to distract her, she was in full meltdown mode during the procedure) then we were off to wait in a pod for some more bloodwork to come back so they could match the platelets with her blood type. Oh, and we got her vitals done... she's now 70cm long and 19lbs 2 oz. (Still growing like a weed!)
Here's our girl waiting in the pod (not sure if it shows up or not, but she definitely had more spots by this point)
Finally, the platelets arrived, and we got her hooked up. Surprisingly the infusion itself only took about 15 minutes.... but then as we got her deaccessed, she took a long time to clot :-/ This made me especially heartbroken for her, as well as incredibly grateful her doctor made the call to get the platelets. Normally clotting from deacessing the port takes 2 or 3 seconds. This time it took 2 or 3 minutes.
*sigh*
So all in all, a very LONG day. We're SO glad her ANC is up though! And that her team at Children's were attentive and made sure she got what she needed!
Now it's time for us all to get some sleep. Hopefully Cambria sleeps better tonight and tomorrow than she did last night or yesterday!
Thanks to all of you who have donated, I did something pretty great this afternoon... I just payed all of Cambria's medical bills that we have received so far! Mind you, they haven't billed us for 2014 at all yet, but seriously - we would be in a much different situation right now without all of your support!
You know, not like we're excited or anything... Yesterday was a good day :-) Cambria was feeling better, she ate not quite as much as usual, but she was eating a lot more than she did Thursday. And she was just generally happier. It was so strange to see her be in a bad mood all day, because that's just not her temperament. She wasn't even smiling at the nurses, she was just deadpan. Yesterday she was still a bit off, but she also had a lot of fun. She's been learning how to make "click" noises with her tongue, and yesterday Julia (one of her favorite nurses) came by to say "hi" and Cambria picked right up on how to make "smack" noises with her lips! It was neat :-)
She wasn't wanting to play very much when we first got there, but she let me take this sweet picture of her:
Then we went back for her last bit of chemo (prayerfully for forever)!! She was tired, but didnt' want to nap, so it was a bit of a challenge getting her happy (especially as they have to take her blood pressure every 15 minutes during the etoposide) but she finally fell asleep :-) We had them give her another hour of fluids as it helped her so much the day before, so when she woke up about 20 minutes after the chemo she still had more time there. It was then that Julia stopped by, and I actually *shared* Cambria, so she got to sit on her Maz's lap awhile. Maz was playing this super interesting game on her phone, which Cambria was studying with such EPIC concentration!
And here she is, all unhooked and done with chemo!
And again, playing away once we got home:
Love this girl!
Now, for what's next.... We go back on Monday for her Neulasta shot. (That's the insanely expensive one that makes her ache from her bones, BUT it also made her counts totally recover 2 weeks after chemo.. so totally worth it!) Then we'll go back during the week of the 10th for bloodwork and checkup, and then our (hopefully) last long week at the hospital will be the week of the 24th. We go in on the 26th for her MRI, the 17th for the injection for her MIBG scan, and the 18th for the MIBG scan itself. Assuming those tests show what her oncologists are expecting, we'll have her port removed either the following week or the week of April 7th. (Just in time for her Grandma's birthday!)
Also, we just found out that some old BAE employee stock I have from forever ago is worth about 1000 dollars! (which, considering I was hoping for 200-300, we were SO excited!) So we've decided to use that surprise money to fly down to Georgia for Easter so Cambria can meet all of the family that lives there.
It is, at the moment, difficult to focus on any of the events of the last week other than just the feeling of relief to have the last treatments of chemo behind us. The excited outcry from our friends and family has been amazing. As much as that does sort of encompass someones perspective the next bit is gonna focus on the negative a bit. There were reasons to fear the Doxo and the last week has been difficult. Basically, both the carbo and the doxo mess with her stomach. So we gave her Sofran on a regular basis, which is the miracle drug that got Debra through her first trimester. Anyway, she seems mostly better now. She finally pooped after a 72 hours of not (I vaguely remember a time in my life when bowl movements wasn't appropriate for polite conversation). She's still not quite back to her usual schedule and she's not eating as much as normal, but each day is better.
On to next steps. Next week is more of the wondrous Filgrastim on Monday to boost her counts again. The week after is just some blood work. In a month we have what promises to be the last long week of this whole thing. Three appointments first being an MRI, and the second two are the MIBG (that big freaky machine with all the radioactive iodine). So yeah...fun.
The most important part of this is that this cancer is done and so is the chemo. Oh yeah, and we are planning to visit GA on Easter to see family, and that is awesome too. Chemo's done our God is an Awesome God.
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"
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 :-)
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.
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!
