Dean's Fight

02/28/2026

DEAN UPDATE/VIDEO: February 28
I forgot to mention in my video it is Rare Disease Day

02/26/2026

Saturday is Rare Disease Day. As I have mentioned, Dean has several rare diseases, from Craniopharyngioma to primary adrenal insufficiency to diabetes insipidus, aka Arginine Vasopressin (AVP) to infantile epileptic spasms, just to name the major health conditions. The official colors of Rare Disease Day—blue, green, pink, and purple—symbolize hope, solidarity, and the diversity of the over 7,000 known rare diseases.

02/24/2026

Friends! We need your immediate help with a legislative issue that has a direct impact on Dean’s medical care, and his life. The news that Sunflower Health Plan intends to remove Children’s Mercy from its network effective May 31, 2026, is a major blow to families with medically complex children who rely on the specialized pediatric care only available there. Here is a link to more information on the Sunflower situation: https://www.youtube.com/watch?v=6UeLo0vGeX8

Please, we beg you to contact your legislators and the chairs of House Health and Human Services and Senate Public Health and Welfare and urge them to advocate and intervene for Dean and other children like him. We have made it easy to do so using the template found at this link: https://docs.google.com/document/d/19hDguKJ9irkkoDjR6LnJf0eNFlx2nhQ2/edit?usp=sharing&ouid=100555780326017249223&rtpof=true&sd=true . Open the link and copy the text into a new Word document or email.

Find your legislator’s information here: https://ksleglookup.org/ #/ .

Contacts for HHS & SPH
• Rep. Will Carpenter (Chair, House Health & Human Services) Room 352-S Will.Carpenter@house.ks.gov 785-296-7660
• Sen. Beverly Gossage (Chair, Senate Public Health & Welfare) Room 445-S Beverly.Gossage@senate.ks.gov 785-296-7382
• Rep. Daniel Hawkins (Speaker of the House) Room 368-W Dan.Hawkins@house.ks.gov 785-296-2302
• Sen. William Clifford (Vice-Chair, Senate Public Health) Room 441-E William.Clifford@senate.ks.gov 785-296-7694

• Tip: When emailing, CC the committee assistants: David.Long@house.ks.gov (House) and Public.Health.Welfare@senate.ks.gov (Senate). They are responsible for ensuring that communications are logged for committee review.

Thank you in advance for your prayers and advocacy on behalf of Dean. Please contact your legislators and share this post!

02/24/2026

It is Rare Disease Week, leading up to Rare Disease Day on Saturday, 2/28. Dean lives with more than one rare disease now, thanks to the rare brain tumor that caused all of them. He faces so many medical conditions, but a few of his rare diseases are:
Craniopharyngioma
Primary adrenal insufficiency
Diabetes insipidus, aka Arginine Vasopressin (AVP)
infantile epileptic spasms

02/24/2026

The post below is a post Tatum shared yesterday. Our world stopped on March 22, 2024. Our lives changed forever. I changed forever.

You do not have to make your reality smaller
just to make it easier for other people to hold.
You don’t have to soften your words,
water down your truth,
or wrap your pain in something more “palatable.”
You are allowed to say:
“This is hard”
You are allowed to say:
”This is unfair”
You are allowed to say:
“This isn’t what I imagined”
Without adding,
“but it could be worse.”
Without rushing to make everyone else feel okay about it.
Because somewhere along the way,
we were taught that honesty is too heavy,
that truth needs to be trimmed,
that our reality should only be shared in digestible pieces.
But your life is not a highlight reel.
And your pain is not a performance.
You are living something real,
something complex,
something that deserves to take up space without apology.
If your truth makes someone uncomfortable,
that discomfort is not yours to carry.
You don’t have to shrink so others don’t have to stretch.
Say it how it is.
Feel it how it comes.
And let your reality exist without editing it for someone else’s comfort.
Written by: Carla Moore from Payton's Path

Send a message to learn more

02/23/2026

Dean Update: Monday 2/23, written by Tatum
Radiation went good today. He normally would have had his weekly MRI this morning but it’s going to be tomorrow this week instead. We did see doctor Rotondo this morning. He said everything is going good except there is a little swelling with the tumor from radiation. He isn’t surprised this is happening. There’s also a 10%-30% chance of this happening. Doctor Rotondo said it’s not enough to where he’s had to adjust the point of treatment yet so that’s good. He also said they’re keeping an eye on his shunt and fluid spaces from his MRI’s and it’s all remained the same.

02/21/2026

It's just grandma & Dean this afternoon/tonight/tomorrow. I am giving Tatum a much needed break to go back home tonight. We are just hoping for a peaceful night. He's actually been a little warm, so hoping less blankets will cool him off. When we struggle with his temperature, most of the time it's too low, but it can occasionally go the other direction. I also got to hang out with Abigail for a few hours today too. ❤️
💙🩶

02/20/2026

UPDATE TO UPDATE #2: Tatum literally just recieved a message in Dean's Children's Mercy portal that they recieved approval for his Vigafyde! Thank you, God! That is one less stress...we still have plentry. Thank you everyone who shared the post & was brainstorming ideas that might be a solution. This was absolutely frightening because he really can not go without this medicine without detrimental effects on his already fragile brain. Thank you. 💙💙💙

02/19/2026

UPDATE TO THIS UPDATE: Tatum literally just recieved a message in Dean's Children's Mercy portal that they recieved approval for his Vigafyde! Thank you, God! That is one less stress...we still have plentry. Thank you everyone who shared the post & was brainstorming ideas that might be a solution. This was absolutely frightening because he really can not go without this medicine without detrimental effects on his already fragile brain. Thank you. 💙💙💙

DEAN UPDATE #2: Frustrated beyond words...🥲
Insurance has denied Dean's Vigafyde refills again. This is the medicine he must have for his epileptic spasms (infantile spasms) & without the med...I will just say it isn't good. Their reason is that Dean is now 3 years old. Epileptic spasms are rare & they usually occur in children under 2. We all know Dean's conditions are not "the usual". Children's Mercy sent an emergency appeal, that was denied by insurance. Children's Mercy has put in another appeal; however insurance has now told us this can take months & still can be denied. He cannot go without this med! Vigafyde is over $3,500 a BOTTLE. He has been receiving 4 bottles in the shipment each month. We are at a loss for what to do. We have been trying every avenue. This is just awesome news to receive on his birthday. We were told when they first put him on this medicine that without insurance, it is an impossible medicine to afford. They weren't exaggerating. Please share. Thank you.

Venmo: (last four digits if needed, 4524)
CashApp: $TatumMusick OR $ShannonFender9902
Go Fund Me https://gofund.me/87adee69

02/19/2026

DEAN UPDATE: Thursday, 2/19
It might be Dean's birthday, but he still had radiation this morning. The cancer center had a gift on his bed when we walked in the room this morning. He has done okay all week. Yesterday it took him longer to wake up from anesthesia. And today it is also taking longer. Today was his 13th radiation treatment. If you see a waffle pattern on his forehead, that is from his radiation mask. Also, his bald spots from radiation are increasing.

Venmo: (last four digits if needed, 4524)
CashApp: $TatumMusick OR $ShannonFender9902
Go Fund Me https://gofund.me/87adee69

02/19/2026

HAPPY 3rd BIRTHDAY, DEAN! My little grandson turns 3 years old today, everyone. The emotions I am feeling cannot be expressed through typing. I am so happy it is his special day. We can only pray that he gets another birthday for many, many years. He is amazing. He is precious. He is strong. We have to wait to celebrate him with family & friends until April, when he is about a month past radiation treatments. That's okay, I am spending the day with both Dean & Tatum. I so wish my mom & dad were here to hold him. That little boy is so special, so inspiring. He is my world. I love you, my little Dean. Happy birthday, bubby.
Venmo: (last four digits if needed, 4524)
CashApp: $TatumMusick OR $ShannonFender9902
Go Fund Me https://gofund.me/87adee69

02/18/2026

Countdown to 3 for Dean, Day 3. It's tough to choose just a few photos each day, because I want to share them all. We celebrate this amazing little boy every single day that we have him, but this week is extra special.
Venmo: (last four digits if needed, 4524)
CashApp: $TatumMusick OR $ShannonFender9902
Go Fund Me https://gofund.me/87adee69