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Malcolm's Medical Fund

$26,335 of $20,000 goal

Raised by 291 people in 5 months
Created November 26, 2018
Malcolm's Morale Team
on behalf of Brent Carpenter
In early October, our 6 year old niece, Malcolm started feeling extra snuggley with her mom, Katie and started falling asleep well before bedtime. Over the next couple weeks she grew more and more fatigued, complaining of headaches and nausea. Mac’s lack of energy is very uncharacteristic and Katie worked through the month documenting the symptoms and communicating with her pediatrician to try to figure out the cause. In November, Katie and Malcolm’s dad, Brent became increasingly concerned as Malcolm started feeling worse and worse.  She had an MRI which showed a tumor encased by a large cyst on her pituitary gland. She was flown to Colorado Children’s Hospital for brain surgery. She was diagnosed with Craniopharyngioma which impacts 1 out of 1 million people. The surgeons were able to drain the cyst and take a biopsy of the tumor, but full eradicating of the tumor will take at least 6 weeks of radiation therapy in Denver.

While we are overflowing with gratitude that the tumor was contained, it is  hard to know how to navigate our feelings about her difficult road to recovery moving forward & all of the unknowns without seeming like we are taking all the good news for granted. She developed chemical meningitis after the surgery, which is extremely painful for her. She also suffered a small stroke on her brain stem causing her to need a variety of rehabilitation. The goal now is to get her strong enough to undergo radiation.

We set up a Go Fund me account in case there are those of you who want to pitch in to help provide some financial support for Katie & Brent because medical care is so expensive and will be ongoing. Katie and Brent started their own business this year and this self employed family could really use a boost especially after the medical flight & in the face of relocating to Denver for 6 weeks of radiation.

Malcolm is so much more than this health condition. She brings the fun in every scenario. She writes in a gratitude journal at night. She loves to label and organize things. She actually watches entire football games and knows the teams and players. She has the talking voice of a comedian and the singing voice of an angel. Her favorite holiday is Thanksgiving & she thrives when planning surprises and making up new traditions. 

Mac and her family have had some big wins, but we won’t be able to take a deep breath for months…more accurately, years. Until then, please keep sharing your love with them in any form that you choose. They will feel it no matter how you do it & there are not words to thank you all enough. 

Love Mac's Aunts,
Lindy Nielsen & Jackie Minick (Katie's sisters)
Crystal Hansen (Brent's sister)
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Mac did so great yesterday! 8 hours of appointments, an IV placement, and a 75 min MRI. We were somewhat disappointed when we realized that these follow up visits are more for monitoring progress than for big pieces of positive information. After several follow up trips we will be able to take more of a deep breath. For now, here is what we know:

Tumor size and shape has not changed (for good or bad). This is apparently a good result at this point. We wanted them to say it was GONE but we are not quite there yet. Shunt appears to be working properly and ventricles look great!

Endocrinology labs show that several of her hormone systems are deficient as a result of radiation. All of them have medical treatments to intervene (synthetic replacements in pill form and injections). We are very discouraged for her having to go through more and have lifelong impacts from this, but grateful that there are solutions.

Radiation impacts will continue to be revealed as time goes on. We have a love/hate relationship with radiation.

It’s difficult for us to accept that “no bad news” is the new “good news”, but we are getting there. One of the specialists gave us the advice to try our best to LIVE in the 12 weeks between follow ups and try to take it one slice of time at a time. So, that’s what we will do!

Mac did an amazing job and we couldn’t be more proud of her and of Sully for their resilience and ability to make a tough situation fun! Everyone at Children’s Hospital Colorado was thrilled to see them again and we had several visitors throughout the day! Very nice to feel so much support and love there. She has a remarkable team in place right now! Here’s hoping for an uneventful next “slice” of time until her follow up in June!
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We are on our way to Denver for Mac’s first set of follow up labs and scans! Please send positive thoughts, prayers, and vibes her way. She feels nervous about the IV and MRI but is excited about a “big kid road trip”. We will update when we have information. Thank you for caring!
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We wanted to let everyone know that we arrived safely back to Billings and have spent the past couple days unpacking and getting settled back into a new version of normal for our family. The cold weather and snow was a bit of a shock to us, but has been a hidden blessing, allowing us to hunker down in our very missed house.
Thank you all so much for your support and continued prayers! We have never felt so grateful to be part of this community as we have in the past three months. We can’t say enough about how loved we feel!
We will travel back to Denver the first week of April for her first set of follow-up scans and labs. We are hoping for an uneventful 5 weeks until then...
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Throughout the last 6 weeks, Mac has chosen to listen to music during radiation each day. Every morning she sits on the floor with both of our phones, Alexa, iTunes music… Anything she can get her hands on, and picks out her songs. Then she writes them on a card for her DJs (radiation techs). It’s been a ritual throughout our family, all over the country, to stop and listen to her playlist (and focus on positivity, prayer, and hope) while she is in treatment.

Because today is her last official day, we wanted to invite all of you to join us! Whether you choose to rock out to Mac’s jams or not, thank you so much for your support during this stage of her treatment. We know there are still difficult days ahead, as we move into the next steps of this process, but we are happy to be able to celebrate this victory with her today. We can’t wait to watch her continued healing and success unfold!
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$26,335 of $20,000 goal

Raised by 291 people in 5 months
Created November 26, 2018
Malcolm's Morale Team
on behalf of Brent Carpenter
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