Kileigh's MPN Medical Fund

On June 26th, my 19 year old daughter had a migraine that lasted until July 1. She's had migraines in the past, but never had one that lasted after resting. On July 1, Kileigh woke up with the worst migraine she had ever experienced. She ate food, relaxed in a dark quiet room, and got hungry again. She went to make food again with Devin (her boyfriend), was mid-way through cooking, when Kileigh started to overwhelmingly feel faint. Kileigh told Devin she felt like she was going to pass out, grabbed him and passed out.

Devin brought her back to consciousness, fed her, and she insisted on napping to get rid of her migraine. She took at least a 3 hour nap and Devin woke her up scared after not having seen Kileigh move while asleep. Kileigh woke up basically screaming in pain. She went to urgent care, where they had to draw her blood twice- as they thought they got an incorrect reading of her blood platelets. She had 1.7 million blood platelets. The normal range is from 100k-400k. The doctor treated Kileigh for her migraine and told her that there's about a 1% chance that this event could be linked to a condition called myeloproliferative neoplasm, but that it's extremely unlikely as it's something mostly only found in adults 60y+, and you know, 1% chance. The urgent care doctor told Kileigh, so she would take this event seriously and talk to her PCP.

Kileigh's PCP referred me to a hematologist/oncologist at the local City of Hope. She was seen, had to get every blood test done possible, and was scheduled for a bone marrow biopsy for July 26. Kileigh, being the stubborn hard-worker that she is, went to work on July 25, but had to leave after being at work for about 3 hours due to the second worst migraine she had ever experienced. The urgent care doctor said she had a full helmet lock migraine, a rare occurrence for people her age. They attempted to treat Kileigh's migraine, but neither the migraine medicine nor morphine was effective this time. Irregardless, urgent care can only do so much and she was discharged.

July 26th Kileigh woke up with the same migraine and dragged her feet heading into the bone marrow biopsy. Again, the WORST pain I've ever seen her in, only to be accompanied by a migraine.

This all leads to August 21, 2017. While the nation was excited and celebrating the eclipse, we were receiving the results of Kileigh's bone marrow biopsy. On August 21, my daughter was diagnosed with chronic myeloproliferative neoplasm- a rare blood/bone marrow cancer.

She's currently getting labs done every week until after she turns 20, is taking Hydroxyurea as chemo, and is getting new medications and reasons to see her doctors almost every 3 days.

August 26, while she was working at High Life, a migraine hit Kileigh and almost floored her. She immediately lost all focus and thoughts, was seeing double, and then nothing at all, she couldn't walk, Kileigh couldn't lift her head. Devin drove Kileigh to our local urgent care safely. The doctor told Kileigh that he didn't understand as to how she was speaking, understanding, had the ability to move both eyes, and legs. He told her that her platelets and vitals were so high, that she should've been having a stroke as he was talking to her. As of August 26, her platelets were over 2.2 million.

My daughter is someone who aims to put herself last. She's always taken care of everybody. She was 4 years old when she started being my "doctor". She's the smartest, most independent, thoughtful, resilient, and courageous young lady I know- but I'm her dad so I'm a bit biased.

Within 10 weeks, my daughter has gone from," I can do it myself, I'm fine," to," wait, I can't do this myself anymore, please help me." She can no longer work 40+ hours/week, much less 40 hours/ week - every week.

These last 10 weeks have brought countless unexpected expenses. She's on her third prescription of migraine medication, second prescription of polystyrene sodium sulfonate suspension (she has to drink 3 bottles each day that she needs this 'script), Hydroxyurea, anti- nausea meds, as well as antibiotics because her WBC is bouncing. She's 19, and prior to this, owed $0 of debt. Kileigh has accumulated over $900 already in medical expenses (with insurance covering most), and it's been less than 3 months. She may have to get a bone marrow transplant, but we won't be discussing that more so until after these first 6 months.

She needs help. We need help. She has to reduce as much stress as possible, and this is the fastest first-step in my opinion. Every donation of any kind helps. Thank you for taking the time to read about my daughters story.


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Kevin PodFather Shilling 
Rosamond, CA
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