WylieRae's Continuing Journey

On September 6th of 2019, our world turned upside down.  On a checkup visit that we all thought would be routine, we were told that our daughter, WylieRae, has cancer at just six months old.  Within three days, Wylie went through two surgeries.  The first was emergency surgery to relieve the pressure in her head, and the second was to place a permanent shunt as well as perform a biopsy.  The tumor was inoperable.  We waited for a week as she recovered to find out what it was.  Dr. Giles Robinson from St Jude gave us a call and covered everything that would be our life for the next year and a half.  Wylie was diagnosed with SHH MBEN (sonic the hedgehog medulloblastoma with enhanced nodularity).

For the next year, Wylie underwent ten rounds of chemotherapy and two more surgeries.  The chemo was rough and she had hospital stays including one to the PICU almost every cycle.  Through it all though, she endured.  In April 2020, her tumor had shrunk to the point that it was finally operable.  We were on the downhill slide.  In September 2020, Wylie was able to finish the chemotherapy and had a disease-free MRI.  She would be getting follow-up scans for the rest of her life to make sure that the cancer was still at bay.  In January 2021, on her first post-chemotherapy scan, a small tumor was found in a different location on her cerebellum.  She had another surgery performed at LeBonheur, in Memphis.  We had hoped there would be great news; however, it was discovered that not all of the tumor was removed.  She now faces another battle through chemotherapy and possibly another surgery.

In the first fight, we were fortunate to mostly be at home and together.  This time, things have changed.  Our family is going to be separated for a while so that Wylie can get most of her treatment in Memphis at St Jude and if she needs another surgery, at Le Bonheur.  All of Wylie's medical expenses are covered.  There are, however, many items that we will need some help with.  Amanda will be flying back and forth when she can to visit as well as be here for any surgery she may have.  Covid precautions have also limited the number of family members present on campus and in housing at St Jude.  Currently, Wylie can only have one of us here at a time which would necessitate us to rent a place to stay if both of us need to be here.  There are also miscellaneous expenses not covered such as food, gas, toys, clothing, and comfort items.  The goal we set is arbitrary as we have no idea how much help we will end up needing.  It is a rough estimate that would provide for two trips for Amanda with the ability to rent somewhere and most expenses we may need if we are here for four to six months. 

As it stands now, her chemotherapy will start again on February 8th, 2021.  She will go through one full cycle (about four weeks) and her situation will be reevaluated.  We should know then if she will have another surgery.  At a minimum, she will be undergoing four to six rounds of chemotherapy.

We have been blessed to receive the best care possible and as a result, Wylie will get to see her second birthday later this month.  Our goal is to make things as comfortable for Wylie as possible, continue to let her know she is loved so much by so many, and help her in any way possible to finally beat this horrible disease that has consumed almost all of her life.

If anyone wants to follow along her continuing journey, we have a Facebook group, WylieRae's Love, https://www.facebook.com/groups/370951637189652.  Anyone is welcome to join and share any encouragement.  We named the group this as she almost always has a happy attitude, smile, and love for those around her.

The main picture was taken by our good friend Carrie Howland to help celebrate her upcoming second birthday.  It captures the essence of her personality better than anything we ever could do. 
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Nicholas Henson
Mooresville, NC

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