Victory L.
"I'm not writing a piece about today. It was a slow day here. I'm going to relay the story of how we ended up here since it seems I've repeated it innumerable times, and telling the same story gets dreadfully old unless you are a traveling bard with skills for embellishment. My embellishment skills would be wasted here, so I'm just going to stick the facts.
Three weeks ago now, Vee went to our co-op group, when she came home she was complaining of shoulder pain. I thought she strained it on the playground so I gave her tylenol and sent her to bed. The next morning when she got up, the place where her neck meets her shoulder was swollen in a strange way. I took her to the walk in clinic.
They couldn't find anything definite so they told me to make an appointment with an Ear, Nose and throat doctor. We had to wait a week for the appointment. The ENT said the likelyhood was for infection so they prescribed antibiotics. From the day after the first night on the antibiotics her face got progressively swollen, the veins in her neck started to protrude and she took on a whistle in her breath when she got upset.
The following Thursday morning she woke herself early for co-op, made her lunch, and insisted that she was going to co-op. By this point her breathing was off a little bit, you could see the vein locks in her neck, and her face was so swollen it looked like she had hayfever. While she was at co-op I reread the package insert for the antibiotic and it said that normal side effects may include swelling and wheezing. I also ran it by the doctor's office that prescribed the medication. The nurse on call said, "wheezing and swelling is serious take her to the ER."
When she got home she wanted to work on some crafts. We took her to the hospital down the street from our house. They did an x-ray, found the mass and sent us to the local children's hospital. At no point did she seem especially I'll until that last day. They told us that her windpipe was so closed off when they started treatment that they couldn't fit a plastic straw down there. They also told us that this all could have grown in the two weeks she became symptomatic.
I'm not writing to scare anyone, but to praise God that we caught it in time”. Amanda Leidner.
April 29, 2020: Living Victoriously Day: 89-90 (3 months)
At the Popsicle Stand Day: 24-25
It's 2:30 am, and I just talked Vee out of another crying jag. She's sound asleep now. She is tired. She can't eat without feeling sick and being in so much pain she needs Morphine just to get up and walk to the bathroom. She misses, "my food," and she misses her people.
I am really really really bad at tears. I don't even do my own tears well. I am at a loss. That's hard when you are used to being able to come up with a lot of the answers.
I'm beginning to wonder things like, "How much more of me will be required before this is over? And will there be any of me left to immediately go back to the other five after this round of hospital stuff?" And I think things like, "Poor Billy, if he misses me as bad as I miss him, he is in a lot of pain. This is no way to keep a relationship."
It used to be that waking up to Saint licking my face off was endearing but so annoyingly messy. What I wouldn't give for the stink breath slobber of my place in the world right now.
This, it is this place. This late at night, lights-on dark emotional place that has driven me to the sincerest empathy for those of you in full quarantine. Because, at home, I never would have tasted this bitter cup in quite the same way. My crew is a built in community. We have one of each kind of person: Billy, the industrious one; Colleen, the well read/learned one; Rhema, the playful, sarcastic one; Esther, the artistic empathetic one; Kai, the energetic complicated one; David, the entertaining one who's still finding his way; and the puppies who break up the monotony with their antics. So, it is in this solitude that my heart goes out to you, because I dare not dwell or focus on my own homesickness.
I imagine in my heart that as Jesus walked up that hill, towards what would be the worst hour of his life, that he longingly recalled days at his mother's table enjoying her fellowship and food. I imagine Mary at a distance remembered fondly the joys of his childhood days past. I picture both of them feeling so lonely, so isolated, so ready to just be done with what was coming. Neither one knowing for sure that it would end in life.
This. This walking with Messiah through the hour of suffering. This is what WE, ALL of us are called to at this hour. Me in my way, Vee in her's, Billy in his, each of my other children in their's, and you in your's. Do not look away from your broken hearts and dreams. Hold them up before your Father God. Because the same God that ripped himself in half to put you back together, hasn't stopped restoring the broken, and a victory resurrection is coming!
Aslan is on the move. The stone table is broken.
Okay, just preached myself happy. Now on to business.
Happy walking!!! Love you guys!!!
#wehavethevictory
#livewithabandon
#shiftingperspective
#momentaryaffliction
Medical Stuff
1) There was a full series CAT scan from chest to pelvis.
2) It was determined from the images that Vee does not have pneumonia.
3) Her pancreatic enzyme numbers were trending up but the doctors were unsure why
4) The CAT scan revealed a pseudo cyst attached to her pancreas that is about the size of my fist.
5) The good news is, we aren't dealing with another layer of oncology as a result.
6) It is a fluid filled cyst.
7) The doctors are weighing out the options with draining it now.
8) She's running a little anemic and will likely receive Rhema's stored blood tomorrow
Praises
1) We are in a first world country with the finest medical care available.
2) We will be home sooner than later.
3) Our God is a miracle working God.
4) Everyone at home is well cared for.
5) Even in all of this I catch Vee singing praise songs.
6) My life led me to this place. I did not come unprepared.
7) I still live the greatest life ever!
8) Someone delivered groceries to my house
Update March 15, 2021:
Victory has reached maintenance therapy, which will continue until June 2022. Which means that we will have some of the same therapies like lumbar puncture and infusions but fewer and farther between, and chemo pills. She hates pills! But she takes them. She's loving life, jumping on the trampoline, going to her home school events, church, and hanging with her friends when our schedule, and her blood work permits. There are still times when her numbers dip, and she has to stay home and can't do anything physical but that's when she spends time focusing on her artwork, and taking trips to Starbucks and Chick-fil-a drive through with her older sisters.
I forgot to mention, in the downtime she spends a good deal of time in her butterfly garden, collecting caterpillars to hatch.
Update September 2022:
Victory gets her port removed!
