Hey all you avid followers... it's day +1.
What does that mean you say? Valid question, and one that I will give an explanation to... but let's kinda get you all up to speed here first...
It's stem cell terminology really, well as we know it anyhow. We arrived here on the 18th, last Thursday night. Friday was the start of her chemo... and with it she can add to the list of toxins that have been administered to her... Thiotepa. She was given that for three days and given Cyclophosphamide for four, the third day of the Thiotepa was also the first day of the Cyclophosphamide... Sunday was a buy one chemo agent, get one free day here at CMH. It was six days of high dose chemo in all. The first full day, Friday the 19th, was day -7.
One of the side effects of Thiotepa is she will look like she has a tan/sun burn. Thiotepa gets excreted through the skin... so she has some temporary winter color. As part of the treatment and dealing with the fallout from the Thiotepa she had to get three baths a day... making up for all those times when she didn't want to take a shower. Every time she went for a bath, they changed the sheets and she had to change her clothes. Then 24 hours after the last Thiotepa ended, she was started on a skincare regement. The skincare will continue for a little while longer... though now it's only one bath per day, but the lotioning up is still three times a day. Just as well though, it's a touch bit dry in here... like if you were to hit me like you hit a rug to get the dust out, there's the potential for a dry skin flake explosion. I know... not a pretty image.
I won't go into detail about all the preventative meds she's receiving, let's just say there's plenty.
So...
Day -7 was the Thiotepa and the baths and the changing, she was still eating.
Day -6 more of the same... but not so much interest in eating.
Day -5 more of the same and no eating and the vomiting had begun, but now the cyclophosphamide is also started, and a catheter is inserted... commonly referred to as a Foley, named in honor of Dr. Frederick Foley who designed it back in the 30's. Anyway... one of the side effects of the cyclophosphamide is bladder irritation and to ensure that nothing is sitting around in there, they insert a Foley. She is also given another medication called mesna, that's supposed to help stem bladder problems as well... she only gets it while getting the cyclophosphamide. Another side effect of cyclophosphamide is mouth sores... so she was started on a mouthcare regiment too... four times a day she has to rinse with one of the magic mouthwashes.
Day -4 and Day -3 no real change, no eating and more vomiting, more baths, lotion, more mouthwash.
Day -2 same, but today is the last day of chemo and after getting her last mesna at around midnight she got the Foley taken out.
One of the risks of inserting a Foley is that you can get a UTI... urinary tract infection, so they took a sample and sent off to the lab because a preliminary dip showed something to merit getting it sent to the lab for a full culture.
Day -1 no chemo, no Foley, no eating, less vomiting and it's moving day... to isolation. The white noise of the room is quite loud... it sounds like you're in a blower or something... anyway, it does a fine job of shutting out any other noise... like explosions outside... it's quiet and loud all at the same time. Oh, the UTI results showed a slight infection... so another med is to be given, at least until it clears up.
And that takes us to yesterday... day zero... stem cell rescue/transfusion day.
Day 0 today is the day that she gets her cells back. They started pre medicating around 10:30 in the morning preparing the transfusion to begin around 11. By 11:35, the transfusion was done and Emmah was not feeling well at all. She started to vomit like two minutes into the beginning of the transfusion. What made her sick was the smell of a preservative they add to the cells to keep them... um... fresh? Maybe that's kept alive through the freezing process... anyway, it (this preservative) smelled like a mix of souring milk and cream corn, leaning more toward the corn smell if you ask me... not totally disgusting, but at the same time, not totally pleasant either. Once the transfusion was done, that feeling started to subside, but not enough for Emmah's liking, she requested something for the nausea. The rest of the day was rather uneventful... just sleeping. So... the cells are in, and now it's waiting until they sprout roots and praying for no whammies... mostly no fever.
And with that, it brings us up right to Day +1... she spent most of her day watching TV. The mouth sores aren't there, but the throat is sore. The whole lining there gets affected and so it's going to be a bit of time before things start to get better... I guess as long as things don't get any worse. She's been put on Total Parenteral Nutrition... TPN... and that was started last evening. She will remain on that until she can eat on her own again. It's not the nausea so much, but the throat that's stopping her. She's lost some weight, as you might expect, but overall she looks good. She's tired and that's to be expected too, her body has been assaulted and is busy trying to regroup. The magic starts to happen when we see her white count coming up, well that's when we see the results of the magic taking place now. I say magic because somehow these cells are pre-programed and know where to go, what to do and then go there and start doing it.
I will try and post her counts (on her blog page) on a daily basis, so you at home can keep track right along with us... kinda like you're here in the room with us. Yeah... right. Anyway... First lemme tell you what the normal range is, then you can see where she's at and how far she has to go. Normal white blood count WBC (4.5-13.5) Hemoglobin RBC (11.5-15.5) and Platelets PLT (150-450). Then there's the ANC... Absolute Neutrophil Count... and that's a measurement of well, lemme go and see exactly how it calculated... be right back. Okay... decided to do this instead... gonna put up a couple of links and you can go there if you want to know more. Link 1 is a bit more technical, and link 2 is a bit of a basic overview. I will also post her weight just cuz I can since they will be doing a daily weigh in. They can, and will, give her transfusions to help with the RBC and PLT's, the other stuff (WBC, WT and ANC) has to recover on it's own. The one's to watch are the WBC and the ANC... those are the ones to indicate a recovery.
Day 0
WBC - o.18
RBC - 9.0
PLT - 52
ANC - they didn't give me a number, so until they do I will assume it's zero.
WT - 33.6 kg... before starting chemo back in August she was about 37 kg, or 81 lbs... she was about 35 kg when we got here on the 18th.
Day +1
WBC - <0.1
RBC - 9.2
PLT - 36
ANC - 0
WT - 33.2
KUIYTAP
At times unwanted, but often are we uncomfortably thrust into living with it. To borrow part of a line from the movie Heartbreak Ridge, "You adapt, you overcome"...
In memory of Emmah ~ KEIYH
A small request... please
I have a small request and it won't take up much of your time.
Now that Emmah's spirit has left her physical body behind and has completed it's journey "home" I would very much like if you could all take a moment and reflect on Emmah... whether you knew her personally or not. Let us know how she touched/affected or made a difference in your life.
I especially would like to hear from those of you who know/knew her, what your fondest memory or memories of her are. Funny stories and what you remember her likes and dislikes to be (no matter what they are) and what word/words you would use to describe her.
In order to keep all of those thoughts in one place, please, please use this link only for this purpose only.
Thank-you
KEIYH
KEIYH
26 January, 2007
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1 comment:
Thanks for the update.....hope all the #'s go up quickly..Love Mom
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