Casually Chaotic.

June 2020 We came back from camping and rolled right into June. We spent the first of June taking care of our little Celiac. She had her yearly check up with the gastroenterologist and looked so cute rocking her pigtails that were helping her mask stay on. She had to have bloodwork done and though […]

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5 > 4

May 2020 May was here! It was celiac awareness month, brain cancer awareness month, a month with DIPG awareness day, and our little superhero’s 5th birthday. I really think May will always be a weird month for us from now on. A month where we get to celebrate our son but also a month where we […]

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672 Days of Chemo.

APRIL 2020 April was an entire month of togetherness and a slow-paced quarantined life. Our family had so much to be thankful for during this weird time in our country. We took togetherness to a whole other level this month though, being as we don’t have family near us, it has been the four of […]

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Shutting Down Disney

March 2020 We had no idea March would turn out the way it did, but the month started out hopeful and exciting! We started with more roller skating, a beautiful day at the park with our Wild + Free group, and story time at the library! LJ’s glasses came in and he looked so grown […]

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RSV and Rollerskating!

LJ’s last scan showed his tumor increased by 13%. The time following news like that is always odd. A mix of pain because the monster just won’t get out of my baby’s head and joy because LJ is completely symptom free. Well kinda. For a week or so after the scan LJ was showing symptoms, […]

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But God,

There really is no easy way of explaining how I felt the weeks leading up to LJ’s two year post diagnosis mark. Sometimes I can only relate our life to being stuck on a rollercoaster that is making you sick but you never want the ride to stop.  We were coming off a “bad scan” so […]

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Happy New Year?

JANUARY 2020 After a whirlwind of a month in December I was really looking forward to some down time in January! Both our moms were coming to visit but other than that we didn’t have any major plans. We celebrated New Years Eve on the 1st because our kids lost their minds about 9pm waiting […]

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13%

We have been so lucky to spend the time surrounding LJ’s MRI’s at the Great Wolf Lodge. This time we were able to check in the night before giving us time to unwind before he had scans the next morning. I use the term unwind very lightly because regardless where you are in the world […]

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Christmastime Chaos

December 2019 December had finally arrived. “The most wonderful time of the year” was here and we were a solid party of four. Looking back on it I still can’t believe we have celebrated two holiday seasons with a DIPG diagnosis. When I tell people LJ was given 9-12 months they usually look at him […]

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Anxiety.

I written a lot about scananxiety that shows itself around cancer diagnosis related scans but what about all the time that isn’t around scans that is filled with anxiety?  I am a psychology major and very distinctively remember learning about panic and anxiety disorders. Truthfully, I thought these were “make believe” disorders, something a patient […]

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