Leah’s Story

Site created on March 15, 2013

We arrived from the little town of Wausaukee, WI to Milwaukee Children's Hospital with Miss Leah on the night of March 13, 2013. The following 48 hours were a blur of doctors and nurses.  We were hit with some very hard things to swallow.Leah is fighting Stage IV Neuroblastoma in true Princess of Power style.  Up til that winter, Leah had a hairline fracture in her wrist when she was 3 and the occasional cold.  That's been it.... She likes to ride horses, fish and play outside.  She's a tough little cookie and nothing slows her down. We noticed she was a little more "gimpy" over the winter.  Chalked it up to growing pains. She would say, "my hip hurts" and then run away and play......  Mid February Leah started running a fever.  With all the "stuff" going around school, we treated it like a normal fever.  The fever would break and come back, break and come back.  We thought, gosh, this fever won't go away..... We thought we finally had it after about 2 weeks.... We seeked out a second opinion March 13, 2013 because she was still walking like an "old lady" and she was having discomfort from what we thought was constipation.  Fever would come back but just barely..... I thought I was just being an overreacting Mama Bear when I made the appointment. Leah tested positive for strep but we decided to go ahead with the CT scan anyways.    Our standpoint being: At this point,  we would rather have it come back "clean" and know for sure there's nothing else going on.  She was a lot of pain and discomfort. 2 Doctors came in to give the results.  They said Leah had a mass on her stomach and that we need to go to Children's Hospital in Milwaukee that night.  A couple phone calls, Nellie and Jeffrey went to my parents and Patrick was on his way.  We met at Jackie's house.  She packed Leah some clothes and some toiletries for us.  Away we went. By Thursday her medical team was 99% sure she had Neuroblastoma, after a 3 hour surgery Friday they knew for sure on Monday.  Scans confirmed it is Stage IV. We went from thinking our 4 year old was having "normal" 4 year old stuff to the harsh reality that our little girl has Cancer.   The next year and a half was consumed by cycles of chemo, tumor removal, stem cell transplant, radiation, antibody therapy and many hills and valleys.  Through it all Leah did not and still doesn't let us forget she is a kid and needs to do kid stuff.   Leah is now 9 - showing no evidence of the Neuroblastoma beast and has continued with her Princess of Power attitude we have all come to love and appreciate. 

Newest Update

August 21, 2020

Journal entry by Jill Dunlap —


So much can happen in a year and so much to be grateful for.   I attached some pictures from 2013, 2016 and today.   A true Princess of Power if I have ever seen one.  
Yesterday was an appointment with a program called New Kids (cue favorite nkotb song) that works with kids to help them figure out what eating and exercise plan works best for their bodies.    Leah qualified for the program because her cholesterol levels were not the greatest and some of her other labs were in a sort of “Purgatory”. They were not within normal range but we’re not to the point where medication was needed.   
We have made a lot of changes at home and her lab results and numbers truly show all the hard work that she has done.   Her cholesterol is back to a normal range  and she is no longer trending toward being prediabetic.  We will continue to the new kids program going forward. 
Today Leah had a little bit more of a lineup.   Little woman could not eat or drink anything for her first two appointments this morning.  Let me tell you - she gets hangry real quick.  I found an old granola bar left my backpack from Peru and debated if I should try to sneak it but decided not to play with that fire. 
First was a liver ultrasound to monitor the nodules that gave gray last year.   Leahs fnh (focal nodular hyperplasia) is unchanged from last year - we like unchanged! 
The labs she had drawn have all come back......drum roll please..... normal range! 
Last was Next Steps Survivorship Clinic to meet and review things.   Got some good info regarding COVID and school.  We discussed risk, safety and what would be best for our household.  Leah will returning to regular classroom learning along with Nel and Jeffrey this fall.   She is actually excited about starting 6th grade. 
A spine xray did need to be added in due to some lower back pain Leah has been having the last few months.   We decided to try a nerve pain medication to help her be able to be more comfortable doing activities.   First consistent med she will be on since 2017ish - not too shabby. 
So, overall a great couple days! 




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