Please read this post. Its not by me. Its by another mother. Explaining why her daughter has to have showers in the middle of the night.
Read this post and really let it absorb.. think about what this agent must be doing to her insides .. This isn’t rare.. this isn’t a unique case. In childhood cancer.. this just IS.. but it doesn’t have to be. It shouldn’t be.
We aren’t just in pursuit for a cure. .. we are in pursuit for better treatment options.
Imagine this was a child you love. Please.. read this post republished here from elaynagrace.com.
Fight for our kids.. Let sweet strong Elayna be your her… Let’s make the future different. …
I’m getting a lot of questions about this last high dose chemo and the showers and realizing that it’s hard to understand why it’s such a big deal. It would be a huge disservice to Elayna and all kids going through this kind of treatment not to explain. This is at the core of why we need less harmful treatment for our children who have cancer. I feel like maybe this is bringing home in a small way how harsh this treatment is.
Thiotepa is the last of Elayna’s three high dose chemo agents. It is a very toxic chemotherapy agent. So much so that we aren’t supposed to have snuggly skin-on-skin contact. It is constantly excreted through her skin/pores and remains toxic as it exits. If we do not keep her clean and dry she will get chemical burns. Truly. It can be bad. So we shower her every 6 hours for about 3 days (the two days she gets chemo and the one after) to protect her skin.
The process takes about an hour and is done even in the middle of the night. That means we get five hours between showers.
Problem is, these are not normal showers.
She has to strip down in the room and wait to be covered strategically with press and seal over the Hickman line site and her tubes. She can’t be disconnected so the pump keeps on working and comes with us. It takes two adults to shower her, which means Jake or a nurse has to “be the tape” that we can’t use, and try desperately to keep water out of her surgical site by pressing on that press and seal. Infection would be very bad for us, so it has to stay dry.
This means she can’t stand directly in the water (and we can’t close a curtain- there are three people and a pole in there). She is freezing.
I scrub every single inch of her and rinse well to remove the chemical that could burn her skin. Then she has to wait patiently while we dry her thoroughly and remove all of the plastic covering from her tubes and body. It’s not quick.
Next is the dressing change. Dressing changes are uncomfortable at best on a new line. We have to move it around to clean with cold sterile water and it pulls. She can’t get dressed until this is complete, so she’s freezing still (even with a heated blanket on her lap).
We can’t use anything tight or sticky so she also doesn’t have her regular, more comfortable dressing on over her new surgically placed Hickman line. She just has gauze sitting on the site and a stretchy mesh shirt to hold it in place.
We have to switch all clothing and bedding at that time to keep all clean. She doesn’t wear her regular clothes because they would get contaminated. This is why you aren’t seeing her beloved blankets and friends in bed with her, too. She hates this part the very most and has shed by far the most tears over it.
That’s because this means she can’t hold HoneyBear as she always has for comfort. He is sealed in a plastic bag for his protection. She is determined to protect him from the bad chemicals. If she touched him, we would have to wash him like everything else- and she won’t let him out of her sight. She is sleeping at night with her alternate “Mama HoneyBear,” who gets washed each day at the Ronald McDonald House, but when I say its not the same to her that’s such an understatement. Even if Mama HB looks similar to us, she isn’t to Elayna, who has had her beloved HB every step of this fight. The tears last night were absolutely heartbreaking. She wants to hold him, but wants to protect him. So she put Mama HB to her face, but as she fell asleep I noticed that both hands were still holding her true love HB in the plastic bag. A small piece of my heart died seeing this last night.
You guys… this just shouldn’t be happening.
I don’t tell you all of this to make you feel sorry for us. I tell you this so you understand. So that maybe you get mad with me. This chemo is so, SO toxic. Our children should have better options.
Scientists are ready and waiting to find us better options. Less toxic options. Less traumatizing options. Smarter options.
If this moves you, please consider donating in Elayna’s honor to fund research. She has her own fundraising page now with Unravel Pediatric Cancer and she is happy when I tell her that someone has donated.
Please check it out.
#teamelayna #elaynabrave #elaynastrong