I am officially done with all my cancer treatments – in other words, I’m a survivor – cue Destiny’s Child song. Hopefully now that I’m done with treatment, I’ll be doing some more blog-worthy things, or doing anything at all, really… Still, I make no promises; I may have finished treatment, but I still get to enjoy more tests and therapy and periodic scans, and, of course, tapering off all my medications (likely accompanied by puking – oh joy). Anyways, as a general recap, I figured I would do a sort of calendar/hero bead summary to document the last year and a half or so.
Now, hero beads are something the hospital does so that kids can have some way to record everything they go through for treatment… got an x-ray? That’s one bone-shaped bead for you. Another x-ray? Another bone-shaped bead. So, I’ll start with my overall illness calendar.
August 7th, 2012 – Diagnosed with a brain tumor and admitted to Meriter Hospital
August 10th, 2012 – Surgery 1 to remove the tumor; lasts 18 hours; out for 4 days
August 23rd, 2012 – Surgery 2 to implant a VP shunt (to help drain CSF and control pressure)
September 4th, 2012 – Moved to room on 3North: in-patient therapy
September 9th, 2012 – Grandma dies
Results on tumor back – Diagnosed with medulloblastoma
September 20th, 2012 – Moved to UW Children’s Hospital to start radiation and chemo
September 21st, 2012 – Surgery 3 to implant an infusaport; notified of sister’s death
November, 2012 – Surgery to implant gastric tube
September–November 2012 – 6 weeks of 5x/week radiation (2 weeks of head, neck, and spine; 3 weeks of head and neck); weekly chemotherapy
November 2012 – November 2013 – Periodic chemotherapy, based off a generally accepted ‘roadmap’ of drugs and timing
Chemotherapy drugs included Cisplatin, Vincristine, and Cyclophosphamide
Periodic MRIs, nuclear medicine scans (to test kidney function), and audiograms
Late October 2013 – Kidney stones
November – December 2013 – Shingles on left eye and head
Vision permanently affected by shingles – hello glasses
Hero beads:
Red metallic ball – blood draw – 120+
Orange-yellow-red striped sphere – biopsy complete – 1
Gold balloons – birthday on treatment – 1
Maroon striped circle – blood culture – 5
Red heart – blood transfusion – 20+
Courage charm – central line surgically in – 1
Green wooden – course of chemo – 19
Cat – CT scan – 2
Decorated wood – day treatment – 18
Gold cancer ribbon – diagnosis – 1
Purple wooden ball – echocardiogram – 1
Girl dangle charm – end of treatment – 1
Smiling wood disc with bandana – hair loss – 1
Teddy bear- inpatient admission – 9
Orange-striped triangle – IV infusion – 5
Sun – MRI – 8
Gold ball – nuclear med scan – 6
Green butterfly – new oral med – 22
Blue with flower – OT/PT – 14
Green with white stripes – platelet transfusion – 20+
Circle with blue anchor – port access/IV placement – 36
Porcelain circle with sun – radiation – 30
Ceramic moon – sedation – 9
Blue Star – surgery – 2
Striped cube – tube insertion –1
Blue and white spotted glass cylinder – ultrasound – 4
Bone shaped – X-ray – 4
I’m sure these hero bead numbers aren’t entirely accurate, and they don’t include anything that happened at Meriter, but I think it certainly provides a sufficient picture… Clearly, my life was just full of excitement. And yet, it seems easy now that I’m faced with weaning off steroids, re-learning how to walk, and going back to school to take 18 credits – yikes! At least I have one more year of school to get through before I have to become a real adult. Abi and Alexa make it seem okay, but they’re too cool to really be trusted…
– Maddy
P.S. Shingles is really terrible, so I’m going to encourage everyone that had chicken pox to get vaccinated!
it's about argen-time! 