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 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!

7 thoughts on “She’s Alive!

  1. “Welcome back, Maddy” are words that have so much colour, shape, feeling, and delight from this blog enjoyer. “Heroically cool ” doesn’t seem to begin to describe all you’ve endured, suffered, grieved, faced, and come to terms with. Welcome back, Maddy. From Lisa, a friend of Abi’s

    • Thank you, Maddy. We have been on the sidelines cheering you on, but you are the one who has lived every day of this long journey. Your pleasant attitude and positive outlook has sustained the rest of us. Still “in your corner” all the way! Love, Aunt Julane

  2. Maddy, I am a friend of Alexa and her family and have been reading all of the posts from the beginning…although all were very well written, creative and informative, I would have to say this post from you provided the best life lesson, inspiration and motivation than any other. I wish you all the best.

  3. Amazing post from an amazing woman! Very inspiring. I love the thought of the heroic beads. I, too, wish you the best as you move forward. Jeanne, Abi’s mom.

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