It's day 5 because it's the 5th day of induction (the first round of treatment chemo). However it has actually been 6 days since we heard the words, "Your daughter has leukemia."
When I actually heard her doctor say those words I literally could not hear anything else. I heard "Your daughter has leukemia, we know this for a fact, we do not know what kind, but there are very effective treatments for this." Then that's it.
I heard Chris choking on a sob.
I saw Susie's face get red.
I felt my eyes sting.
But I did not really hear anything else. I don't even know if I asked any questions (like I usually do).
The other thing I remember is this medical student yawning. I wanted to stand up, slap them in the face, and leave.
I refrained. But I made a mental note to NEVER be so inconsiderate.
I noticed the lack of eye contact from the medical students. I felt sorry for them.
Anyway that was Day -1. I am glad we never ever have to go back to that day. I am grateful we are on Day 5. I am glad to be here.
I feel that is worth repeating.
I am glad to be here.
I am glad to be surrounded by such brilliant physicians who have such a talent for blending the science and art of medicine. I am glad to be here with nurses who are not only compassionate and caring, but also competent. I am glad that my daughter was diagnosed and started on treatment in less than 24 hours. I am grateful I work with some amazing women and men; and that I am able to be here with my daughter - and I know my own patients are well cared for.
So since today is Saturday the unit is quiet and there is not much to update on.
Some changes to her plan:
1. On Monday, Day 7, she will get her Day 8 chemo and LP. A day early so that we may get to go home on Tuesday earlier. However the rest of the treatments for the month will remain on Tuesdays.
2. Her leg, hip, back, thoracic pain is all gone. This is reassuring that the chemo is working and her leukemic cells are reducing!
3. Her jaw and mouth are hurting. This is a known side effect of one of her chemo drugs. It's pretty severe. She is using her pain pills (scheduled and PRN), ice packs, and magic mouthwash to help.
4. Her IV fluids were stopped but she was supposed to drink 2.5 L of fluid today, and because her mouth hurts, I fear she has not and will not get to goal. I hate that she is hooked up to an IV, and I want her to start to feel more "normal" again. But without the fluids, I also worry about her kidneys. It's the mom vs. nurse battle, always.
5. She hates taking pills. HATES it. She will need daily prednisone (helps the chemo work), ranitidine (protects her stomach from the prednisone), senekot (one of her chemo meds causes constipation). On weekends we will add antibiotics to prevent lung infections. If anyone has suggestions, or things I can say to her to help her take her pills, I am all ears. Please offer advice.
6. Her doctor came over with more consents to sign for the clinical study. She told me that the cytogenics are back and while she could not remember the specific translocation of her B-Cell ALL, she did know that is was nothing that would change her treatment plan. Nothing "bad"... but isn't that fucked up? Isn't it already bad?
7. Her labs for anyone who cares:
WBC 0.6
Hgb 12.7 (YAY!!!)
Hct 36
Platelet 11 (she will soon get another transfusion, the cut off is 10)
ANC - this is not on the lab report they gave me, but she is still neutropenic. She will be considered neutropenic until her ANC comes up to 500. She is in the low 100s.
Her electrolytes and kidney function are all good, her uric acid remains low. Everything looks very good.
Today was another Pet Pal day and she went to see the dogs. She only lasted about 5 mins before she asked me to go back to her room due to lightheadedness. Our goal was 4 short walks in the hall. We have only done 2. She sat up in the chair for a couple hours though. I ordered her a pizza from Domino's and she was in HEAVEN, rolling her eyes back in her head with enjoyment of "outside world food." We discussed what she wants me to cook when we get home. She had a friend visit and that was helpful for her spirits. I had a friend visit and that was helpful for my spirits. (I also got a much needed toe nail polish.)
A close friend recently told me to try to think about how this is an opportunity to make lifetime memories with my kids. I am grateful for that. I am glad to be here; glad that my kids and I can experience this. I know we will look back and see this was another drop of glue holding us together.
Saturday, July 30, 2016
Family Game Night
While Chris got some needed alone time with her, I played Life with them. It was fun, and a little taste of our normal life. We play games, cards, etc. often. I think it was a nice way to show her younger siblings that some things are the same while other things are different.
A more medical based update will follow later today.
My heart feels softer today and yet also stronger.
XO
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