Blogs

Transplant Prep: G-Tube

Everett and Tom and Haylee are back at Duke and ready to begin transplant preparations. Today, Everett goes in for surgery to have a g-tube implanted. The g-tube will assist with feeding, weight gain, and medication throughout the transplant process.

Donor Matched and Insurance Approved!

Everett got a cord blood donor match, and Tom and Haylee got insurance approval for the procedure! Everett will be admitted to Duke University Hospital on September 8th to begin the bone marrow (stem cell) transplant process.

Thank you for your continued well wishes and prayers throughout this challenging journey! Little Everett and Tom and Haylee need all the support they can get!

Happy Birthday, Little Warrior!

It's Everett's 1st birthday, and he had a wonderful time being back home with his big sisters!

And We're...ELIGIBLE!

Great news on our last day of preliminary testing...Everett is ELIGIBLE for the stem cell transplant!

Everett's overall health is great, which means the procedure is more likely to go smoothly if done as soon as possible, before too many PMD symptoms begin to take control of Everett's life. While very scary and risky, we are all so thankful that this opportunity is available. Now, we just need to pray that a donor match in the cord blood registry can be found quickly and that insurance will approve the procedure.

Tom and Haylee hope to be able to return to Duke in 2 to 3 weeks to begin the next step in this journey toward a better life for Everett. Thank you to everyone for your continued prayers!

Tests, Tests, and More Tests!

DAY 1 - August 3rd

Everett's first day at Duke was certainly busy! There were labs, an echocardiogram, an electrocardiogram, X-rays, a pulmonary function test, and two neurological assessments. Everett was a total champ and he's already charming the staff with his squeals of delight and gap-toothed grin!


DAY 2 - August 4th

Duke University, Here Comes Everett!

Here we go! Everett, Tom, and Haylee have traveled from their home in Maryland to Duke University in North Carolina for a grueling 2 weeks of testing.

Brave little Everett will endure a wide array of tests, including EKGs and X-rays, neurocognitive evaluation, and nerve conduction testing to determine he's a candidate for a bone marrow (stem cell) transplant.

If he is eligible and if insurance approves, Tom and Haylee will take turns living with Everett in North Carolina during the transplant procedure and recovery, which is expected to take approximately 8 months.






 
 
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