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.
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.
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.
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!
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