She’s Alive!

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 7^th, 2012 – Diagnosed with a brain tumor and admitted to Meriter Hospital

August 10^th, 2012 – Surgery 1 to remove the tumor; lasts 18 hours; out for 4 days

August 23^rd, 2012 – Surgery 2 to implant a VP shunt (to help drain CSF and control pressure)

September 4^th, 2012 – Moved to room on 3North: in-patient therapy

September 9^th, 2012 – Grandma dies

Results on tumor back – Diagnosed with medulloblastoma

September 20^th, 2012 – Moved to UW Children’s Hospital to start radiation and chemo

September 21^st, 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!