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Starting Chemo and Saying Goodbye

It's Sunday afternoon, and Everett is all checked in at Duke and ready to begin chemo at midnight.

The chemotherapy Everett will be undergoing will destroy his bone marrow (the spongy, fatty tissue found inside larger bones). After the chemotherapy is completed, the transplant team will replace the destroyed bone marrow with the donor stem cells. The transplant is designed to replace Everett's cells that don't produce enough myelin in his brain with cells that will. If more myelin is generated, we hope that the impact of PMD on Everett's life will be reduced.

And We're Back On Track!

It's official! No more fever, and all tests for viruses came back negative! Chemo is rescheduled and will begin on Sunday, September 13th, at midnight.

Everett and Tom and Haylee have been discharged to the Ronald McDonald House until Sunday morning. Please pray that Everett doesn't catch anything while out in the real world!

A Bit of a Setback

While back in Maryland last week, Tom and Haylee tried to keep Everett away from his big sisters while they were sick, but those kid's colds are tough: Everett has a fever.

As a precaution, Everett's doctor has decided to delay starting chemo (which was supposed to begin at midnight) for a few days. While anxious to get started, Tom and Haylee appreciate the staff at Duke for being so cautious and wanting to minimize as much risk as possible during this incredibly risky journey.

Transplant Prep: Central Line

After some time off back in Maryland, Everett and Tom and Haylee are back in North Carolina to continue transplant preparation.

Everett went into surgery this morning to get his central line implanted. The procedure went very well, and just take a look at that tough new haircut! The line will be used to administer chemotherapy and medications and to draw labs over the course of the next 12 months.

A Jaunt Around the Hospital

Everett's g-tube surgery was a complete success! One more day in recovery, and Everett will be discharged. In the meanwhile, our little warrior got a pass to leave the recovery unit and walk around the hospital for a bit.

Thank you for your continued prayers!

Can't Keep This Boy Down

Just one day after surgery, and look who's ready to play again!

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!






 
 
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