Hello Internet,
Before we start, I want to reiterate an important point: I am not a healthcare professional. Most days, I’m barely even a professional. When it comes to anything I share on here, it is expressed in a way that I understand it. I could be and very likely am wrong. At this point, this is catharsis. With that in mind, be graceful when I say that as I understand it, leukemia is a cancer of the bones and the blood.
Monkey has ALL, the most common and most treatable version of childhood leukemia. Right now, we’re in-clinic waiting on her labs to come back so that we can find out if she can have her bone marrow extracted. This is because, so far, she has responded well to her chemo. The cancer is gone from her blood, as it is supposed to be, and now they’re looking at her bones to see if it has moved into there.
At this point in her treatment, her blood should be clear. If it is, then we have five to seven months of treatment left before she should enter maintenance and then, hopefully, remission. If she can last three years after that without the cancer coming back, she has a 98% chance of being cancer free for life.
As of right now, they have taken her temperature, and so far she has no fever. That is good news for us. Hopefully, we will not have to stay for longer than a few hours. Once they are done taking a look at her blood, they will put her out and extract some marrow and do a spinal tap. So far, she has not had any cancer show up in her spinal fluid, which is a good sign. With the cancer retreated out of her blood and into her marrow, they can decide the next stage of treatment for her.
It is strange to say, but this is a problem more of convenience than existence for everyone involved. That is not to say that there is not a threat here, but the threat comes more from her own body than from the cancer inside of it. With the chemo coursing through her, her immune system is weakened and unable to fight back against even simple sicknesses. Fevers are suddenly life or death and antibiotics are the rule. To come home, we were dosed with an antibiotic, and to go to the dentist she will need another. Before that, she was dosed on a previous antibiotic, which could land her on three antibiotics simultaneously since she has no proper immune system to speak of.
Even this is more inconvenience than anything else, an inconvenience of costs in money and in time. While Monkey’s health is an obvious concern, it is not a constant concern. We are vigilant but, in all, she appears to be a healthy little girl with more-than-average limitations. We have to avoid large groups, and we have to be extra careful about washing our hands as we come and go. She is on a steady stream of antibiotics, and we have to take fevers more seriously than most, but that aside, she is fine.
The cost is in comfort and time. We spend a lot of time in the hospital with weekly visits. I mentioned in my big mistake post how I had spent something like fourteen days in the hospital with her, trading off with Noodle after twenty-four and later forty-eight hour shifts, of some twenty-odd days of the month to that point. In that time, we had food go bad, fruit flies move in on a watermelon that went bad, and emotional and physical exhaustion as we struggled to keep consistency for both small ladies.
Even without a baby coming, that is a lot. With a baby coming, it has been beyond demanding. It is strange because I have an easier time writing at the hospital. After her bedtime, there is nothing to do but write for hours, and even during the day there is quite a bit of downtime even as we force her to go on walks to keep her active and try to engage her in reading and mathematics.
The financial price is something beyond our scope, but the emotional and temporal price is only growing, and we’ve come to recognize that there is no steady. We’ve started keeping a bag ready for our visits, and that makes two now, with the hospital bag ready. We buy easy meals, and we don’t worry about recycling and eco-friendly options as much because we simply don’t have the time to consider the world like we used to with our little girl sick.
I mentioned in a past post the exhaustion that came with it. I was put on a new med for ADHD during the last visit and have since taken myself off because I wasn’t sleeping, at the hospital or at home. I’ve started sleeping again, which has been good, but the exhaustion is still there like a hovering specter sapping my spirit. It is something we all feel, deep in us, directly to our bones.
Sincerely,
RWS
P.S.
-Short Rest-
Books
Tower: The Giver by Lois Lowry
0. One Piece Vol. 98, Ch. 990: “Army of One”—994 50% (6—10)
1. Sun: Fullmetal Alchemist Vol. 1, Ch. 1: “”—?? 0% (?—?)
2. Mon: One-Punch Man Vol. 10, Punch 54: “Pumped Up”-54.1 80% (9—10)
3. Tue: Kingdom Hearts Vol. 1, Ch. 1: “”—? 0% (?—??)
4. Wed: My Hero Academia Vol. 10, No. 84: “From Ida to Midoriya”—89 33% (4—9)
My Hero Academia: Vigilantes Vol. 4, Ep. 32: “The Job”—35 56% (6—9)
5. Thu: Soul Eater Vol. 1, Ch. 1: “”—? 0% (?—??)
6. Fri: Samurai 8: The Tale of Hachimaru Vol. 1, Ch. 4: “Family Argument”—6 50% (4—6)
Boruto: The Next Generation Vol.??
7. Sat: Books
-Fiction: Pyramids by Terry Pratchett
-Library: Trans Medicine: The Emergence and Practice of Treating Gender by Stef M. Shuster
-YA: The Giver by Lois Lowry
-Fan Fiction: Final Fantasy: Fated to Ch. 50 by tinygaia Ch. 46—50, 90%
-Nonfiction: Salt, Fat, Acid, Heat by Samin Nosrat 0% (?—??)
View from the Cheap Seats by Neil Gaiman 26% (130—502)
-DnD5e: Player’s Hand Book by Wizards of the Coast 0% (?—??)
-Reread
Squirrel: The Chronicles of Narnia: The Last Battle/One Piece Vol. 17 154—155
Games
Tower: .hack//MUTATION
1. JRPG: Final Fantasy X-2 39% (20/52hrs)
Tales of Legendia 0% (?/??)
2. Backlog: Digital Devil Saga ??% (??/42hrs)
3. Replay: Persona 5: Royal
4. Multiples: Fable: Anniversary Good 0% (0/21hrs)
5. Completion: Dragon Age: Origins Kallian Tabris 14% (10/74hrs)
6. Series: .hack//MUTATION 74% (44/50hrs(17/23hrs))
7. Free: God of War ??% (??/33hrs)
8. Handheld: Persona Q: Shadow of the Labyrinth P3 ??% (??/80hrs)
Stardew Valley
Shows
Tower: Batman: The Animated Series
1. Critical Role Exandria Unlimited Ep 1: “The Nameless One”—8 0%
Dimension 20 Unsleeping City Ep. 1: “Starting Spreading the News”—17 0%
2. Anime: FLCL 33% (3—6)
Digimon: Adventure Myotismon Arc 25% (23—28(3—8))
3. Online/Owned: Archer Season 2 15% (3—13)
4. Netflix: Moving Pictures Season 3 67% (5—6)
Seven Deadly Sins Season 1 8% (3—24)
5. Disney+: X-Men Season 1 8% (2—13)
6. HBO: Teen Titans Season 1 15% (3—13)
7. Movies: Firefly 21% (4—14)
Moon Knight 33% (3—6)
X-Men
Promare
Castle in the Sky
Solo: A Star Wars Story
Dumbo
Starship Troopers
No comments:
Post a Comment