The plan is to go through a few rounds of chemo in groups of two until the tumor is down to 50% f it's size. From there, her body will continue to work on the cancer until it shrinks away, or the cells change permanently into normal, non-cancerous cells. (Meaning she'll possibly have a little lump where the tumor is now, but it would be safe.) Because she's only stage 2 intermediate risk, she's eligible for a very well established "low dose protocol" where the rounds of chemo are done in sets of 2, with the first round using . Carboplatin and Etoposide, and the second round uses Cyclophosphamide and Doxorubicin. This second set of chemo treatments *do* scare me, but thankfully the're at really low doses and their scary side effect probability is tied to lifetime cumulative exposure, so even at 4, 6, or 8 rounds, her chances of those side effects are still fairly remote. Here's to praying for only two rounds!!!!!
After the super long meeting with Cambria had to get some blood work done... so they accessed her port for the first time. This, unfortunately, was NOT something Cambria wanted to have happen.
It. was. awful.
There were many reasons why it went as bad as it did, so we're hoping to mitigate some of those in the future. Firstly, she was woken from a nap when she was still tired. Secondly, she wasn't allowed to suck her thumb. This was for two reasons, one her arm would be in the way, and two she had to wear a mask... .see this is a super sterile procedure, (as in, each latex glove is individually wrapped in sterile paper wrappings similar to how bandaids are kept) The mask was the third issue, as she's never had something covering her mouth and nose before and it was very scary. Also, to keep with the sterility of it all, Derek (who was holding her) had to wear a mask so she couldn't watch his mouth (another of the Cambria calming tools) . Fifthly (or however you say that) the mask meant there was no ability to use the ever calming bottle to distract her, and finally she had to be held still (being held down is never something Cambria is at peace with). So basically, she was a screaming baby in full meltdown mode (as in heart wrenching panicked shrieking of doom) BEFORE they stick her with the needle and drew the sample. Since they had numbed the skin before doing all of this, I'm still pretty sure the needle didn't hurt at all, but boy was it an ordeal... in fact, it was so traumatic for everyone (including the parents and, I think, the nurses) we all agreed it would best to leave her port 'accessed'. Which means she a little tube with a yellow plastic piece that has a needle attached. This yellow plastic piece has a needle which goes into the implanted port under her skin, which has a central line going into a major artery. Yes, that is as freaky as it sounds. It ends up looking like this:
With the goals of keeping Cambria from messing with this set up, as well as keeping everything clean and dry, we ended up putting that tube in a little Ziploc bag, and then using medical tape to adhere it to her skin, and then layering a series of bibs below and on top of the pajamas. This actually ended up working our really well all week, and on a later day a nurse actually stopped us to look at our system and she said she'd be recommending it to parents in the future. Now, even with it all taped down, we needed to make sure Cambria wasn't "playing' with the access for a variety of fairly obvious reasons. This meant that even though she had previously been sleeping in her own crib at night, in her own room, now we'd be back to taking turns sleeping in the recliner with her. (Much to her excitement) She sleeps so peacefully when she's with us, and we can monitor her hands. She's super pleased with this arrangement, we on the other hand are fairly sleep deprived. This also means we're going to have to break her of this treat, and redo all of those lovely nights teaching her to sleep on her own. Still worth it - we'll just be a bit bleary eyed when this is all over.
Finally we were back to our hometown about 5:30/6:00 pm, so we went to dinner. We chowed down at Uno's while Cambria slept, and then headed up to Once Upon a Child (LOVE that place!) and RiteAid to put in the prescription for her anti-nausea medication (Zofran). The plan was to give it to her before we left for her first chemo appointment the next day, and then as needed afterwards. The thing is, most pharmacies only have the tablet form, while we needed the liquid form. The nurses told us to try a 24 hour pharmacy as they tend to be the only ones with the liquid version on hand. Luckily our RiteAid (the only 24 hour pharmacy nearby) had the liquid, but unfortunately not enough for the full prescription. So they gave us 15 of the 100 mL and told us to come back the next evening for the rest. This meant we had plenty for Tuesday though, so we headed on home for some well earned sleep.
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