Latest Updates

On Everett's recent visit to Duke at the start of May, we learned that his immune system has achieved NORMAL levels! Read more about our little warrior's visit in blog post Drumroll, Please...

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Past Fundraisers

We received an enormous number of donations for our 2016 Team Everett Yard Sale this past Saturday, October 22nd, at Christ Reformed Church in Middletown, MD. A whopping $3,037.63 will be donated to COTA in honor of Everett!

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Day 715 - Bus Time

The special education bus service which takes Everett (and big sisters) to school and brings Everett home officially began today!

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Day 713 - First Day of PreK!

Everett had a great first day of PreK! He is enrolled in an inclusive half-day program for 3 year olds at our local primary school...which means the Big Sisters are with him too (2nd grade and Kindergarten).

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Day 708 - Successful Surgery!

UPDATE: Surgery went well and they successfully removed both the line from his ventricle and the port device from his chest! Additionally, Everett has been so healthy lately that his team determined that another port was not needed. Hooray! Everett Continue Reading »

Day 707 - Unexpected Surgery

Everett and Daddy returned to Sinai for his monthly check-up only to discover his port stopped working. After a dye-test fluoroscopy and echocardiogram, it appears the line has broken free from the device and is currently floating around in his Continue Reading »


Today, Everett celebrated his third birthday surrounded by more than 80 loving family and friends. We were thrilled that so many supportive people were in attendance for his first proper birthday party.

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Family Roadtrip!

Everett (and family) thoroughly enjoyed our first family vacation! It was so wonderful to be able to introduce Everett to family in Cape Cod, Dracut and Leicester, Massachusetts!

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Day 690 - Therapy Champ

Big guy powered through multiple therapy sessions today like a champ. For the first time in months, he was playing with playdough without gagging! And no tears, just lots of smiles when touching new textures with his feet. Score!

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Day 658 - Padding Problem

Time to look for a new alternative to the padding around Everett's crib...found our little guy sleeping like this last night.

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Day 645 - First Vaccinations!

Huge milestone today! Everett received his first round of vaccinations! Due to the transplant, our little guy must start vaccines all over again from the beginning. And it may seem like a strange thing to celebrate, but we are just so thankful that Continue Reading »

Day 638 - What A Difference!

What a difference a whole year can make!

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Day 636: Carnival Time

Everett thoroughly enjoyed his first carnival! He couldn't get enough of the lights, sounds and crowd. It's truly remarkable to be able to expose our little guy to fun new experiences!

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Day 634 - Happy Father's Day!

It was a very Happy Father's Day for a very proud daddy!

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Day 631 - The Pediatric Movement Center

Everett's immune function is well enough to begin participating in therapies outside of the home and we are so excited to have found the Pediatric Movement Center! This is quite a milestone for us and we can't wait to see how much our little guy is Continue Reading »

Day 615 - First Dentist Visit

Everett's first visit to the dentist! Everyone at Mt. Airy Children's Dental Associates has been so supportive during our entire journey, and all the lovely staff were so excited to finally see our little guy. Thankfully, Everett only cried for a Continue Reading »

Day 596 - Ramped Up!

More amazing news to share!????In December, we mentioned that several members of the Mount Zion United Methodist Church in Myersville, MD, had generously donated their time to help us move landscaping to prepare for the installation of the Continue Reading »

Day 592 - Worshiping Together

Our whole family was able to attend Mass together again for the first time in 22 months!

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Days 587 & 588 - Drumroll, Please...

Everett's follow up trip to Duke was a complete whirlwind! It was truly wonderful to be able to see so many doctors, nurses, and staff who genuinely love our son and were amazed at Everett's physical transformation. Over the past 6 months, he's Continue Reading »

Day 580 - Strong and Spunky

Everett powered through multiple therapy sessions today. We are thrilled our little guy is getting to be so strong and spunky!

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Day 575 - All By Himself!

Over the past few months, we have noticed our little warrior gain so many new and amazing skills! After working specifically on kneeling during his PT session this afternoon, he was observed climbing up onto his therapy bench and playing while Continue Reading »

Day 568 - On the Move!

We are so thankful Everett's therapy team is constantly providing suggestions and coordinating equipment for our little guy to test out and get his body moving. Everett loves chasing people (mostly Big Sisters) in the mobile stander!

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Day 550 - Big Update

Sorry for the long gap since we've posted...Everett has been busy living and loving life!

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Day 525 - Brand-New Wheels!

Fabulous weekly visit to Sinai today! Labs looked amazing, skin is clear of GVHD, and the team at Duke notified us this week that Everett could finally discontinue taking his anti-transplant rejection immunosuppressant medication (Imuran)! This is a Continue Reading »

Day 516 - Fun-Filled Weekend

We hope everyone enjoyed President's Day Weekend as much as Everett did!

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Day 506 - Goodbye, Toenails!

Goodbye, toenails, and goodbye, Sinai! Everett's toenail removal surgery this morning was a success! Despite the procedure and sedation, he remained his active and playful self all day, so the team felt confident that he was well enough to finally Continue Reading »

Day 505 - Charming Nurses

nother day of fluids, antibiotics, and charming nurses. Thankfully, all the cultures and tests have come back negative. While no one can ever be completely positive, the current theory is the fever on Tuesday was a symptom of the ingrown toenails. Continue Reading »

Day 504 - No More Fever

Our happy guy has spent the entire day charming all the nurses and trying (nearly successfully) to climb out of the crib!

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Day 503 - Sick, but Okay

Everett was admitted to the Children's Hospital at Sinai this evening for a fever of 100.9. Thankfully, Tylenol worked quickly and he perked right up, but they have taken cultures and are giving him IV fluids and antibiotics as a precaution.

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Day 502 - Milestone Reached!

We are very, very blessed that Everett has been such a great sleeper since returning to Maryland. However, this evening he continued to cry even an hour after bed time. When Mommy went in to check on him, she found him standing in the crib and close Continue Reading »

Day 497 - Mostly Awesome Progress!

Weekly clinic visit went great! Labs continue to be stable, which is a blessing since we are weaning the immunosuppressant and the super expensive Ecluzimab. We were also pleasantly surprised that Sinai allowed us to run his IVIG infusion for half Continue Reading »

Day 490 - Growth Spurt

Weekly clinic visit today was brief, and everything went great! Thankfully, Everett seems to be responding well to weaning the immune suppressant anti-transplant rejection medication. Only a mild rash has appeared, and it is being managed with Continue Reading »

Day 483 - More Med Weaning!

Today marks 5 months since Everett moved back home to Maryland. The time has flown by, and we have thoroughly enjoyed living as a family again. Everett adores playing with his big sisters each day and we've noticed a dramatic improvement in his mood Continue Reading »

Day 478 - Port Replacement Part Deux

Port replacement surgery this afternoon went well. Everett was a total champ and didn't even cry after waking up from anesthesia. We hope this one stays put so this procedure will never need to be repeated again. Thanks for your continued prayers Continue Reading »

Day 476 - Best Labs Ever, but More Surgery

Today's labs looked the absolute best they've ever been! It's so amazing to see how far our little guy has come! Unfortunately, our celebration was short lived because we learned that Everett's new port has completely moved out of place and will Continue Reading »

Day 469 - More Steroid Reduction!

Weekly clinic visit went great! Everett's Primary Physician at Sinai returned after being away for several weeks and was thrilled to see how much our little guy has changed and grown. Labs continue to remain stable, so we may begin to wean his Continue Reading »

Day 466 - On the Move in the New Year!

Happy New Year! Thank you for continuing to provide support and prayers throughout 2017! Everett is certainly starting the year off right...he is officially "on the move!"

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Day 465 - Community Support

We would like to extend our greatest appreciation to Gary Weddle, Jack Lloyd, Chaz Spalding and Rev. Mike Beiber from the Mount Zion United Methodist Church in Myersville, MD. These gentlemen braved the cold this morning to transplant our Continue Reading »

Day 454 - Surgery Success!...Mostly

Initially, we believed today's port replacement surgery went well. Everett was a total champ and smiling and giggling afterwards. He didn't even need additional pain meds during recovery.

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Day 449 - Port Replacement

Unfortunately, Everett's port needs to be replaced. The medical team took one x-ray and immediately further study was necessary. Everett was in the radiology room for less than a minute. Since our little guy has grown so much over the past Continue Reading »

Day 448 - Overnight Stay

The weekly clinic visit has turned into an overnight stay. Everett's port has stopped working, so the radiology dept will need to investigate in the morning to determine the problem. We are hopeful that the port will not need to be replaced and the Continue Reading »

Day 434 - Stability

Weekly clinic appointment at Sinai went great! Everett received his infusion of ecluzimab and lab results were nearly identical to those collected last week, so we are thankful for stability! Our primary doctor at Sinai is planning to contact Continue Reading »

It's Giving Tuesday! COTA Is Matching Donations!

Today, November 29th, is Giving Tuesday! In honor of this day dedicated to philanthropy, COTA is matching all donations given today dollar by dollar!

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Day 427 - Thankful for Progress!

Our little guy has had a fantastic week! He is getting stronger each and every day. A few highlights include: Trying to sit up on his own, prop-sitting for about 15-20 minutes at a single stretch, standing while leaning against something for a few Continue Reading »

Day 420 - Back in Business!

Everett and Daddy spent the entire day (12 hours) in the Children's Hospital at Sinai for the weekly clinic checkup and scheduled infusions of ecluzimab and IVIG.

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Day 413 - Slowing Down

Weekly clinic visit at Sinai went OK. Unfortunately, we need to proceed significantly slower than expected while weaning off medications because the GVH rash, nausea/vomiting return with each reduction. However, we are encouraged to see minor Continue Reading »

Day 404 - Our Little Jack-O-Lantern

Happy Halloween!

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Day 392 - Long Sinai Visit

It was a long visit today at Sinai Hospital so Everett could receive his biweekly infusion of ecluzimab and IVIG to boost his weak immune system.

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Day 378 - Final Day Posttransplant Studies

The final day of Everett's 1-year posttransplant studies went very well! In addition to a developmental evaluation and follow-up eye exam (from his surgery in August), Everett was able to meet with his Duke primary team. Everyone was thrilled to see Continue Reading »

Day 377 - Second Day Posttransplant Studies

The second day of Everett's 1-year posttransplant studies was quite the whirlwind with a sedated MRI, BAER, VEP, EEG, lumbar puncture, appt with the neurosurgeon, and another appointment with the neurologist. As usual, Everett was a real trooper!

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Day 376 - Posttransplant Studies Day 1

The first day of Everett's 1-year posttransplant studies at Duke went very well. Echocardiogram, chest x-ray, and pulmonary lung function test were completed, but the very best part was seeing some of our favorite nurses again!

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Day 371 - GVHD Rash Defeated!

Great weekly clinic visit at Sinai today! Thankfully, his GVHD rash is totally gone! All of his labs are stable, and we've almost completely weaned off the steroid that prevents GVHD in his gut. He's experiencing a few periods of nausea throughout Continue Reading »


It's officially been 1 year since Everett received a transplant of unrelated umbilical cord blood at Duke University Hospital in an attempt to reduce the challenging side effects of Pelizaeus-Merzbacher Disease. It's certainly been a roller coaster, Continue Reading »

Day 365 - A Stepping Stone

We are so thrilled to be able to share another milestone! It may not seem like much, but after the year he's endured, Everett putting his fingers in his mouth and sucking on them is a very big deal. This is a great stepping stone for him to be able Continue Reading »

Day 364 - Sinai Visit

Weekly clinic visit to Sinai went great! Thankfully, his GVHD rash has improved, labs are looking good, and the team worked very hard to make sure we weren't waiting very long for the medicine (like last week).

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Day 263 - Occupational Therapy

Everett has no idea that occupational therapy isn't just play time.

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Day 362 - Home For 1 Month!

It's officially been one month since Everett was able to return home and we have been blessed to witness wonderful changes and growth each day!

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Day 361 - Bouncy House Play

Bouncy house and swing in one is good!

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Day 360 - Pooped From Playing Hard

Everett definitely played hard today. You can't tell, but he's actually sleeping while big sisters are making tons of noise. It's so good to be home!!!

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Day 358 - A Boring Day

After our 14-hour visit to Sinai yesterday, it's great to have a boring day with nothing notable to share! We certainly hope more days like this are in Everett's future!

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Day 357 - A Long Day

Woohoo! Labs and rash are are stable. Our weekly visit to Sinai is turning out to be a long one because Everett needs infusions of two separate medications that help his immune system. We arrived this morning at 11am, but there was a delay at the Continue Reading »

Day 356 - Chemo Anniversary

The creams seem to be working, and his rash is definitely improving! We look forward to Everett's weekly check up at Sinai tomorrow and are hopeful that labs will also continue to remain stable or improve.

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Day 355 - Too Sleepy

Sessions with our new in-home PT are going well, but we think it's because they're so early (2 hours before he typically wakes up) that Everett is too sleepy to protest.

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Day 354 - Deflating Mr. Stay Puft

For the past few weeks, we have been weaning a steroid used to protect Everett's gut from Graft vs Host Disease (GVH) and to prevent vomiting. So far, the weaning was going well, but unfortunately, our little guy has broken out in a GVH rash. We are Continue Reading »

Day 353 - Big Sister Helpers

Having a sibling with special needs has many challenges, but the Big Sisters have been so helpful reminding visitors to wash their hands and remove shoes, helping to administer Everett's medications, hook up his tube feeding, giving him a bath and Continue Reading »

Day 352 - Family Movie Night

Everett is ready for his first official Family Movie Night!

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Day 351 - Fine Motor Skill Improvement!

Over the past few days, we have observed Everett's fine motor skills and interest in small toys (without lights and sounds) improving. Instead of immediately pushing everything onto the floor, he is taking time to explore his toys and use both hands Continue Reading »

Day 350 - One Year Ago Today

On this day last year, Mommy and Daddy drove Everett to Durham, NC, to officially begin his transplant journey at Duke University Hospital.

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Day 349 - Reunited!

Hooray! The Big Sisters are finally well, and the siblings are reunited again! The house is super noisy, and Everett is loving every minute of it.

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Day 348 - Hoping for Sisters

Hoping and praying that the Big Sisters are healthy enough to return home tomorrow!

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Day 347 - A Holiday Apart

Everett was thrilled to FaceTime with his Big Sisters today! Since it's a holiday weekend, unfortunately, we have to wait until Tuesday for them to be checked by their pediatrician to make sure they are healthy to come home. Thank you so much for Continue Reading »

Day 346 - Window Visit

The Big Sisters dropped by to say "hello!" They were cheering Everett's name like he was a rock star, and he thought it was hilarious.

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Da 345 - Chocolate Face

More chocolate pudding ended up on his face than in his mouth. Without the Big Sisters here to serve as positive role models, Everett hasn't wanted to eat much. It's amazing how much this little guy loves and misses his big sisters right now even Continue Reading »

Day 344 - Missing His Playmates

This little brother is pretty unhappy that the Big Sisters can't return home yet...Aurore was diagnosed with walking pneumonia today. Thankfully, Everett is still feeling healthy; he's just lonely without his favorite playmates.

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Day 343 - Great Sinai Visit

Great clinic visit today at Sinai filled with lots of smiles and giggles! Labs continue to remain stable, and we are going to be able to try weaning some medications even more. We even had a chance to catch up with Dr.Prasad (Primary Dr at Duke) via Continue Reading »

Day 342 - Immune System Challenges

The most challenging part of being home while Everett still has a poor immune system is the increased risk of infection while living with a 4 and 6 year old. Despite the fact that our girls wash their hands at least 30 times a day and take a full Continue Reading »

Day 341 - Sleeping So Well!

Since his arrival home, Everett's sleep patterns have dramatically improved! He used to rely heavily on medication and never lasted more than 6 hours without waking.

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Day 340 - Sweet Prince

Everett enjoyed his first (of probably very many) tea party with Snow White and Sleeping Beauty. He loved when the Big Sisters kept calling him their "Sweet Prince."

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Day 339 - Change in Mood

The transformation in Everett's mood since he returned home has been remarkable. It's so wonderful to see him happy, smiley, and laughing all the time again!

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Day 338 - Grandma Visits

Grandma's turn to come and play for the day!

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Day 337 - Nana Visits

Nana was finally feeling well enough to come over and spend the day with the Budsky Boy!

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Day 336 - Comfy at Sinai

Everett received his Ecluzimab in style today at the Children's Hospital at Sinai. We are hopeful that Everett won't have to use them often, but the rooms are certainly comfortable.

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Day 335 - Storytime With Three

Storytime before bed is a lot more complicated with three kiddos to please, but we're so thankful to all be together again and wouldn't want it any other way!

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Day 334 - Lucky Little Guy

Everett had a fabulous first visit to Sinai Hospital! We love his medical team at Duke University Hospital so much that transferring Everett has been a great source of stress for our family. But everyone we have met at Sinai is lovely, they have a Continue Reading »

Day 333 - Sleeping Sweet

Since his return home, Everett has been playing hard and (more importantly) sleeping very well!

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Day 331 - A Room of Everett's Own

Our little guy is so happy to be home and in his own room again!

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Day 332 - Loving Every Minute

The excitement of their little brother being home hasn't worn off yet...these siblings are loving every minute.

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Day 330 - Home At Last!

Home sweet home! Everett's Big Sisters had a blast decorating for his arrival!

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Day 329 - The Go Ahead!

Everett can finally go home!!!

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Day 328 - Waiting for the Word

Hoping to hear confirmation during Everett's clinic appointment tomorrow that we may be able to return to Maryland! Lab results need to remain stable and Sinai Hospital in Baltimore must be ready to take over Everett's care. Thank you for your Continue Reading »

Day 327 - A Year Ago Today...

A year ago, we found out that Everett was eligible to participate in the stem cell transplant study at Duke University. And even though it is research, very few elements are funded. Our initial quote was $1.1 million dollars—which Everett Continue Reading »


Happy Birthday to our favorite little chunk!

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Day 325 - Packing!

Daddy spent most of the day organizing and packing up items in the apartment at the Ronald McDonald House. It's amazing how much stuff we have accumulated over the past year!

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Day 324 - Last Speech Therapy

Everett enjoyed his last speech therapy session with Lisa today. It has been wonderful to watch our little guy expand his communication skills with her. He is really going to miss her tons!

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Day 323 - A Few More PT Sessions

We are still in shock after being told that Everett may be able to go home next week! There are many things to coordinate and plan in order to make sure there isn't a significant gap in services and therapies.

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The bad news is that Mommy and the Big Sisters cannot visit this weekend to celebrate Everett's 2nd birthday. The good news is they'll be too busy making sure everything is ready for Everett and Daddy to move home to Maryland next week!

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Day 321 - Rest Is Over!

Rest time is over! Everett is almost completely back to his silly self after the surgery and was able to resume both PT and speech therapies today.

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Day 320 - Icky Eye Drops

The worst part about recovering from eye surgery is the eye drops several times a day...but at least our chubby guy isn't upset for very long afterwards.

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Day 319 - Healing Eyes

Today was a much better day! The irritation has definitely subsided, so now Everett only needs to wear the arm braces when wearing sunglasses outside (otherwise he immediately rips off the glasses). Thankfully, everyone is getting much more rest! Continue Reading »

Day 318 - Awful Arm Bands

Everett is in great spirits today despite getting very little sleep last night...he hates the arm bands, but they prevent him from rubbing his eyes. We're hoping that the burning and irritability he's experiencing goes away by tomorrow so he won't Continue Reading »

Day 317 - Eye Surgery

3pm Update: The Duke Eye team just took Everett back for his surgery. (they were delayed this morning due to emergency surgeries.) Everett's procedure should last about 2 hours. Thank you for your extra support and prayers today!

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Day 316 - Therapy and Fun

It was a great day filled with therapies and fun! And thank you so much for sending additional support and prayers for Everett's eye surgery, which is scheduled for 11:30am tomorrow.

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Day 315 - Surgery Go-Ahead

Labs are table! Everett has a little bit of GVHD rash and has vomited at least once a day for the past few days, so Dr. Prasad made a few medication adjustments to hopefully clear that up ASAP.

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Day 314 - Therapy Tag Team

Therapy Tag Team again! Everett doesn't whine nearly as much during PT when the speech therapist is there to distract him!

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Day 313 - Epic Elmo Quest!

Living in isolation can be quite dull, but Daddy always makes things extra fun...obstacle courses and epic quests to find toys are Everett's favorite things to do!

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Day 312 - Back at the Beginning

One year ago, we mailed the following letter to our family and friends explaining Everett's PMD diagnosis. Little did we know that the following week Everett would be accepted into the stem cell transplant study at Duke University. The transplant is Continue Reading »

Day 311 - Boys Only

Everett and Daddy are enjoying a boys-only weekend together...complete with buffalo wings, Game of Thrones, and extra naps.

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Day 310 - Photo Session Snub

Everett couldn't be bothered with a daily photo session today...he was far too busy having fun and working hard during physical therapy!

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Day 309 - Smiling Speak Therapy

Everett really loved speech therapy and spent most of today's session smiling and giggling. Of course this may not be the case for every session throughout his life (and there will be many), but it's so great to see our little guy enjoying himself Continue Reading »

Day 308 - Great Clinic Visit

Great clinic visit today! In addition to lots of attention from lovely nurses, Everett received an infusion of expensive Ecluzimab (which happens every other week).

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Day 307 - Dual Therapy Session

Everett received double the attention during his dual speech/physical therapy appointment this afternoon. We're so blessed to have a team willing to find ways to work together in order to support Everett's goals.

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Day 306 - It's Messy Work

Feeding Everett for the past few months has been quite a challenge. The poor guy has dealt with wacky taste buds caused by chemotherapy, thrush, icky-tasting medicines, reflux, and more. He doesn't seem to like anything in his mouth lately, so we've Continue Reading »

Day 305 - Gtube Adjustment

Quick visit to Duke's Valvano Day Hospital this afternoon to adjust his gtube button and for minor medication tweaks.

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Day 304 - Weekend With Mommy

Hooray for a whole weekend with Mommy!

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Day 303 - Hard Worker

Our tough guy worked really hard during PT and speech therapy...which is pretty impressive considering he wouldn't take a nap all day.

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Day 302 - Eye Surgery Scheduled

Everett had his 3-month follow up eye exam with his neuro-ophthalmologist today. Strabismus surgery (to prevent crossing and improve the ability of his eyes to work together) is tentatively scheduled for August 5th. Thank you for your continued Continue Reading »

Day 301 - Long Clinic Day

Long visit at clinic today so Everett could receive two scheduled infusions. We are thrilled lab results continued to remain stable, but Everett's immune function is still very poor. Thank you so much for your continued prayers and support!

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Day 300 - All Week With Aurore!

After living in isolation, Everett's social skills (especially with kids) have greatly suffered. So, he is really loving having his Big Sister around this week. She has been a great help during PT, speech therapy, and naptime snuggles!

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Day 299 - Boring Playday

Hooray for a boring day! No clinic appointments, therapy visits, or lab pokes! We love the times when Everett just gets to play with toys all day!

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Day 298 - Diagnosis Anniversary

Exactly 1 year ago today we received confirmation of Everett's PMD diagnosis. To say that this has been the most challenging year for our little family would be an understatement...

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Day 297 - Family Snuggles

Mommy and Big Sisters arrived super late last night after driving through horrible traffic and a terrible storm, but the snuggles this morning made it totally worth it!

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Day 296 - Speech Therapy Progress

Our little guy is already making so much progress in speech therapy, and we couldn't be more thrilled!

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Day 295 - Motivated at PT

Everett was so motivated during PT today that he was actually reaching for toys and trying to play instead of begging for snuggles!

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Day 294 - Successful Weaning So Far...

As a side effect from the transplant, in March (6 months post-transplant) Everett developed a very rare condition which caused his red blood cells to begin shredding. Thankfully, Dr. Prasad caught it quickly, and he began using the world's most Continue Reading »

Day 293 - Holding On at PT

Everett had a great PT session today...despite spending the first few minutes simply holding on for dear life!

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Day 292 - Back to Business

It's pretty quiet with the girls away, so Everett is back to serious business...

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Day 291 - Goodbyes Stink!

Saying goodbye stinks!

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Day 290 - Weekend With Five

We are so glad the five of us are together again...even if it's only for the weekend!

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Day 289 - Special Needs Sibling

Surprisingly, Big Sister isn't bored yet...which is pretty remarkable for a 6 year old. Today, she helped administer Everett's medications via his gtube, hook up his feeding pump, took a nap with him, and gave him a bottle.

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Day 288 - Big Sister Help

Big Sister is having the best time spending the week with Daddy and Everett!

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Day 287 - Weaning off Ecluzimab

Hip hip hooray for another stable clinic appointment! This is the first week in months that Everett did not receive an infusion of the World's Most Expensive medication. While Ecluzimab works really well fixing the problem with Everett's red blood Continue Reading »

Day 286 - PT Progress

Everett got to show off some sweet skills during PT today. We are really proud of all the progress he is making even though he's still swollen and uncomfortable from various medications.

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Day 285 - A Lovely Fourth

Today may not have been anything like all our other 4th of July celebrations, but we certainly had a lovely day just being together!

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Day 284 - Together Again!

Together again! It's nearly impossible to get a decent picture of all three kiddos together, but super easy to take an unflattering one! Enjoy!

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Day 283 - Big Sister Excitement

Everett is so excited to see his Big Sisters tomorrow! FaceTime and videos are great, but 2 months apart is way, way too long!

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Day 282 - Speech Therapy

Everett has been very uneasy around strangers lately, so we're very excited that he LOVED his new speech therapist! His session was great and we certainly look forward to hearing his sweet voice more often!

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Day 281 - That Sweet Voice

Due to the thrush and other oral issues, Everett's been silent (except for crying) for quite a while, so it so precious to hear his sweet voice again!

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Day 280 - Three in a Row!

Everett had another great weekly clinic visit! This is the third week in a row that labs have actually improved! We are so proud of our little fighter. This journey is not an easy one, but we are blessed to be on it and so grateful when things are Continue Reading »

Day 279 - Time With Mommy

Sorry, Daddy! Mommy can't stop spoiling and snuggling her little Budsky!

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Day 278 - Happy at PT

Proof that Everett doesn't completely hate every second of he was actually smiling!

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Day 277 - Walk Time

Mommy and Everett are reunited for a whole week! The empty campus is a great place for a walk. Since Everett won't wear the mask, we still have to cover him if anyone is within a few feet...he is not a fan...

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Day 276 - Glorious Sleep!

Sleep is glorious! Now that Everett has been weaned off steroids, our little guy is finally sleeping through the night again. This is a mega-huge milestone! Proper rest for the body is so essential to healing...and parental sanity!

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Day 275 - Healthy Lungs

Echocardiogram, chest x-ray, and pulmonary function testing were completed today as part of Everett's 9-month posttransplant studies. Everett screamed most of the time, so it was no surprise to be told that his lungs are doing well! We should hear Continue Reading »

Day 274 - Concentration Face

Our tough little guy has to work hard to do everything and anything. Crawling, sitting, standing, eating, name it, and it's a challenge. But we can always tell when he is working hardest if he has this expression on his face. We are Continue Reading »

Day 273 - Mr. Popular

Mr. Popular had a great visit at the Day Hospital today. In addition to snuggling with several of his favorite nurses, Everett's hemoglobin, platelets, and white blood cell results looked the best they have in months!

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Day 272 - A Rough 3 Months

Tomorrow, Everett will begin his 9-month posttransplant testing. It's been an especially rough period for the past 3 months, so we are very hopeful to hear some good news again! Thank you for your continued support and prayers!

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Day 271 - Working Through the Tears

Low-key day today. Everett cried during his entire PT appointment, but he worked really hard, so it's okay!

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Day 270 - Happy Father's Day!

Happy Father's Day, Tom! Looking forward to the day when our family is together again and we may celebrate how truly wonderful a Daddy you are!

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Day 269 - Gorgeous Weather

Mommy and Everett were bummed to miss the Team Everett kickball tournament in Maryland today but, thankfully, they were able to get outside and enjoy the gorgeous weather in Durham, NC.

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Day 268 - Weekend With Momma

Hooray for a weekend with Momma!

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Day 267 - GVHD Rash

The GVHD rash is persisting on Everett's scalp, so we're applying the different steroid creams 6 times per day. Thankfully, the rash doesn't seem to be bothering him, but we're incredibly hopeful that it goes away quickly and he won't need oral Continue Reading »

Day 266 - Silly Hairdo

Labs looked good, and tongue is back to normal! As long as everything continues like this, we do not have to return to the hospital for Everett's next appointment until next Wednesday!!! And Everett has developed a slight rash on his scalp, so the Continue Reading »

Day 265 - Stronger Every Day

Don't let the tears fool you, this little boy is working really hard and getting stronger each day!

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Day 264 - Quiet Campus

Duke University is really quiet and peaceful when all of the students are away for summer break. Of course, Everett is not as impressed...

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Day 263 - Another Boring Day

Hip hip hooray...another boring day! We are hopeful that Everett continues to have many, many boring days...that will mean he is closer to coming home!

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Day 262 - A Boring, Purple Day

Everett is on his second day (out of three) of the gentian violet treatment, so his mouth is still purple. Otherwise, it was a completely boring labs, clinic visits, or therapy appointments. Boring days with our little buddy are actually Continue Reading »

Day 261 - Gentian Violet Treatment

Today, Everett began a 3-day mouth treatment (gentian violet) to combat thrush on his tongue. He's been fighting this for a few weeks with little success and ultimately lost interest in eating again, so it's time to try something stronger. We're Continue Reading »

Day 260 - So Much Attention

No lab work and just one infusion of antibiotics today, which is part of his prescription from the super-high white blood cell count last weekend. Everett gets so much attention from the lovely nurses at clinic that he certainly doesn't mind!

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Day 259 - Mild Steroids

For the first time in months, Everett was unable to keep his food down early this morning. Doctors believe this is another symptom of the GVHD (along with the rash on the abdomen), and so he will resume taking a mild steroid for the digestive system Continue Reading »

Day 258 - GVHD Return

Labs were stable again today, but Everett woke up with a mild Graft vs. Host Disease (GVHD) rash on his abdomen. We are using steroid creams on the rash four times a day and hope it goes away quickly.

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Day 257 - WBC Back to Normal!

Hooray! White blood cell count is back to normal! Everett has been discharged from 5200 and allowed to return to the Ronald McDonald House. We are so thankful this visit was simply precautionary and that no infection was found. We cannot thank you Continue Reading »

Day 256 - WBC Improvement

White blood cell count is improving! Everett remains to have no other symptoms to indicate an infection and even got a pass to leave the hospital for a few hours this evening. We are hopeful to be discharged and allowed to return to the Ronald Continue Reading »

Day 255 - Catching Up

The team is still investigating why Everett's white blood cell count is elevated, but thankfully, he continues to remain asymptomatic. The best part about being back on 5200 is catching up with all the fabulous staff we haven't seen since Everett's Continue Reading »

Day 254 - Readmitted

White blood cell count is continuing to rise, so Everett has been readmitted to 5200, the Duke PBMT unit. We are thankful his medical team is incredibly cautious and working hard to resolve this issue immediately, but it's certainly very scary to be Continue Reading »

Day 253 - White Blood Cell Roller Coaster

Unfortunately, Everett's white blood cell count was even higher today, which typically indicates there is an infection. Thankfully, he has no other signs or symptoms, but the medical team is very cautious. Everett received a second dose of Continue Reading »

Day 252 - Port Clot

The team was initially unable to draw blood from Everett's port today, so they needed to use a special medicine to breakup the clot (which lasted over an hour). After they were finally able to gain access, Everett received his weekly dose of the Continue Reading »

Day 251 - Stopped the Steroids!

Steroids finally stopped last week, so Everett's chubby cheeks are feeling squishy and squeezable again (instead of rock hard). Next step is for them to finally start slimming down!

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Day 250 - PT Smiles

Everett is feeling good today...lots of laughs and smiles! Our silly, lazy boy even smiled during PT which is pretty amazing! Hooray!

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Day 249 - Mask On!

Proud of our guy for wearing his mask the whole time while walking to/fro the hospital to pick up prescriptions! Normally, he rips it off after 3 seconds, so this is a big milestone!

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Day 248 - Mommy Snuggles

An entire day of Mommy and Everett playing and snuggling is pure bliss!

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Day 247 - Fluke Confirmed!

Looks like yesterday's high white blood cell count was a fluke because it was back to normal today. Hooray! In fact, we are thankful that all of his labs looked really great this morning and his PT session went well too!

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Day 246 - Hoping for a Fluke

Platelets, hemoglobin, and LDH all looked better today, but Everett's white blood cell count was high, which may mean infection. Budsky will need to return tomorrow to double check...we are certainly praying that it was just a fluke!

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Day 245 - A Free Wednesday

Since Everett will receive his weekly dose of Ecluzimab (super expensive medicine to help with red blood cell shredding) tomorrow, today is actually the first Wednesday he hasn't spent at Duke University Hospital since September. Praying for good Continue Reading »

Day 244 - Sweet Sitting Skills

Everett got to show off some sweet sitting skills today during PT! And no tears during the entire session! Hooray!

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Day 243 - Improvement!

Lungs are clear, and labs are better! Now the focus is on removing some of the extra fluid and getting our little guy back to a normal weight so he feels more comfortable.

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Day 242 - Beautiful Weather

The boys enjoyed more great weather today. We are hopeful and praying for good labs and a good clinic appointment tomorrow. Thank you for your continued prayers and support!

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Day 241 - Tough Time Sleeping

Boys were able to get out for some fresh air during a nice long walk today...too bad they're both so exhausted because Everett is having a really tough time sleeping at night.

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Day 240 - CT Scan

Our little guy was very brave and cooperative during his CT scan today. The images confirmed there is definitely fluid in Everett's lungs, but thankfully no infection. Everett received both a blood transfusion and dose of ecluzimab (super expensive Continue Reading »

239 - Missed Visit

Unfortunately, Big Sister Matilda has strep throat, so the Big Sisters and Mommy will not be able to visit to celebrate Matilda's 4th birthday. And Everett's labs looked a little worse today. The team is still concerned about fluid retention, so he Continue Reading »

Day 238 - Fluid Around the Lungs

Boys had a very long day (8 hours) in the Day Hospital today. Everett's lab results looked OK (platelets almost back to normal again!), and he received two (scheduled) infusions of medicines.

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Day 237 - Very Good PT Day

No tears and minimal whining during PT = a very good day!

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Day 236 - No Infusion

Labs continuing to slightly improve...Everett did not need a blood transfusion or any infusions today. Keep those prayers coming!

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Day 235 - Stander Time

Everett has been spending more than 2 hours (total) in his stander each day...this is a really great start (most kids hate it at first), and we couldn't be more thrilled with our little trooper. Our ultimate goal to achieve the most benefits (bone Continue Reading »

Day 234 - Hospital-Free Weekend

Low-key day for the boys just hanging out together. Thankfully, they have no planned hospital appointments for the entire weekend.

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Day 233 - Lab Improvement

Lab results are finally improving! We are incredibly relieved that things are looking better and hope this trend will continue. Everett's medical team expected him to need a blood transfusion today (along with his dose of super expensive Ecluzimab), Continue Reading »

Day 232 - Vote For Everett!

Everett's custom ankle foot orthoses (AFOs) finally arrived! These will help our little guy to maintain proper alignment and provide stability. Daddy picked a very patriotic flag pattern in honor of election year...we vote for Everett!

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Day 231 - Bath Baby Burrito!

Lab results from today were almost exactly the same as Sunday, but we are incredibly thankful they didn't get worse!

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Day 230 - Weekly Labs

Hoping and praying for improved lab results during Everett's weekly clinic visit tomorrow.

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Day 229 - Moody PT

This picture perfectly sums up Everett's mood during PT this afternoon.

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Day 228 - Together for Mother's Day

Enjoyed a lovely Mothers Day! It didn't matter one bit that most of our time was spent in the Day Hospital...we are just so thrilled to be together!

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Day 227 - Rainbow of Heroes

We are so thankful that our entire family was able to enjoy the Duke PBMT Family Support Program's Rainbow of Heroes Walk, which honors those who have gone through transplant. It was amazing to be surrounded by doctors, nurses, staff, and families Continue Reading »

Day 226 - Caught in the Rain

Everett and Mommy had a lovely day hanging out (and getting caught in the rain on our walk back from the pharmacy). We are anxiously awaiting the arrival of Big Sisters and Daddy so the whole family may spend the weekend together!

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Day 225 - Missing Daddy

Mother's Day may be around the corner, but our little guy has certainly turned into a Daddy's Boy. He misses Tom so much this week.

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Day 224 - Drop in Labs

Unfortunately, Everett's lab work did not look good today...platelets dropped significantly and the red blood cells are bursting. We are hopeful this is just a small bump in the healing process and his body will bounce back quickly. Thank you for Continue Reading »

Day 223 - Stander Has Arrived!

We are thrilled that Everett's stander has finally arrived! In addition to providing Everett with another way to play, this will help with Everett's blood circulation, digestion, joints, and bones.

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Day 222 - Snoring

Finally able to capture proof of Everett's snoring. This should stop when the steroid swelling goes down (hopefully soon!), but it sure is kind of sweet.

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Day 221 - Garden Walk With Mommy

Everett and Mommy had a quick visit to the Day Hospital this afternoon (labs are stable!) and then were able to go on a lovely walk through the gardens.

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Day 220 - Week With Mommy

This little guy is super happy he gets to spend an entire week with Mommy! Hip hip hooray!

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Day 219 - Mood Swings

Poor little guy barely slept at all last night (woke up every 2 hours) and has been having some serious mood swings today. These pics were taken about 15 seconds apart.

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Day 218 - Fun Day of PT

PT was a lot of fun today trying out some new toys to expand Everett's skills.

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Day 217 - Less Hospital Time

Great news! Labs continue to be stable, so Everett no longer has to visit the hospital three times a week. Instead, we will continue our normal weekly appointment with Dr. Prasad each Wednesday and drop by for quick lab checks each Sunday. This is a Continue Reading »

Day 216 - Hard Work

Everett put in some hard work today during PT....still whined the entire time, but most grown ups do too!

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Day 215 - Stable Labs

Stable lab results and snuggling with nurses = good day!

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Day 214 - Avoiding the Crowds

Today's walk was much more successful than yesterday! The only bummer was that there were so many other people out and about also enjoying the gorgeous weather, so Everett and Daddy had to steer clear of the crowds and keep moving away from people Continue Reading »

Day 213 - Downpour

Everett and Daddy got caught in a horrible downpour during their walk today! Everett was able to stay completely dry while covered in the (but very angry he was under the stroller cover and kept in the dark while Daddy ran home), but Daddy wasn't so Continue Reading »

Day 212 - A Long Day

Everett and Daddy had a long day filled with PT and several infusions at Duke's Valvano Day Hospital. Both boys are certainly looking forward to an appointment-free weekend!

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Day 211 - Eye Surgery

Everett was not a fan of his eye appointment today, especially after learning that he will need surgery on both eyes sometime within the next 4 months...

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Day 210 - Loving Good News

The finger prick to draw labs may have stung for a second, but the lab results were great! Platelet level almost back to normal, hemoglobin steady, RBCs looking good. Additionally, we were able to decrease both his steroid and blood pressure Continue Reading »

Day 209 - Impersonations

Holy Schnikes! After lots of hard work, Everett is very close to mastering his Chris Farley impersonation..

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Day 208 - Hangin' in the Shade

Because of the chemo treatments before transplant last year, it is important to keep Everett's skin out of any direct sunlight for at least 6 more months. But that doesn't mean he can't enjoy hanging out in the shade!

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Day 207 - Puffy Cheeks

Despite the steady decrease in steroid dosage, Everett's cheeks are still pretty can barely see a little button nose in his profile.

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Day 206 - Up All Night

Everett must have been so excited to be with Mommy that he barely slept last night. Instead, our little stinker fell asleep while playing several times throughout today!

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Day 205 - Fingers Crossed

Mommy drove down this evening to trade places with Daddy for the weekend. Shortly after the switch, we learned that Big Sister Matilda (still at home in MD) has a fever of 103.3. Please pray that Matilda recovers quickly and Everett doesn't catch Continue Reading »

Day 204 - Can't Fool the PT!

We really appreciate having a PT who doesn't fall for Everett's tricks. Lately, our little sneak starts crying the moment he hears her voice. No matter what, she still makes him work hard and rewards him with lots of snuggles at the end.

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Day 203 - Extended Stay

Great visit with Everett's primary physician, Dr. Prasad, today. It appears the super expensive medication is working...Everett's labs are improving and we can continue to decrease the steroids!

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Day 202 - Back to Work

Everett was hit with a double whammy today...the Big Sisters aren't there to spoil him with attention, and PT with a heavy head is hard work!

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Day 201 - More Visits Soon!

We were having such a fabulous time that it was really hard to see Mommy and the Big Sisters leave today. But we are certainly thrilled that Everett's labs have stabilized enough for them to be able to come back and visit more often!

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Day 200 - Family Outing

It's hard to believe that 200 days have passed since Everett's stem cell (donated unrelated umbilical cord blood) transplant to combat the devastating effects of Pelizaeus-Merzbacher disease.

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Day 199 - Big Sister Storytime

Big Sister Aurore is thrilled to be able to read to Everett in person instead of during FaceTime!

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Day 198 - Big Sister Care

Big Sister Matilda loves finally being able to help take care of her Baby Budsky Boy!

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Day 197 - Weekend Visit

After battling horrible rush hour traffic and a scary hail storm, Mommy and the Big Sisters arrived safely for a weekend visit. This picture makes it all worth it!

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Day 196 - Stable Labs

Our brave little guy had lab work drawn from his finger (no tears!) to give his port a break. We are thrilled that today's results were stable. Thank you for all the continued support and prayers!

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Day 195 - Brace Fit

Everett was measured this morning for custom articulating AFOs (hinged ankle braces) which will provide support to his ankles/feet and encourage proper alignment. We look forward to those arriving in about 5 weeks...just about the time Everett Continue Reading »

Day 194 - Great Labs

Great lab visit today...all values are improving/stabilizing, and he's starting to lose a little bit of weight too.

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Day 193 - Hard Work

Daily PT exercises with Daddy are hard work!

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Day 191 - Busy Day

Our little man had quite a full day today...PT session, infusion at the Day Hospital, and snuggle time with some of his favorite nurses completely wore Everett out.

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Dayt 190 - Elmo Motivation

Hooray! Everett's current record for prop sitting is a whopping 17 minutes and 13 seconds...which conveniently happens to directly correspond with one episode of Elmo's World.

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Day 189 - Blood Improvement

Everett's lab results today showed improvement after only two doses of his super expensive medicine. (The team was not expecting positive results until after three or four doses.) The breakdown of red blood cells has slowed, platelets are up and Continue Reading »

Day 188 - No News Day

No labs, tests, PT, OT, feeding therapy, or Big Sisters means no news to report today.

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Day 187 - Last 6-Month Studies

Everett did well during the final portion of his 6 month posttransplant studies (EEG/BAER/VEP). The hardest part was separating him from his sisters in the morning.

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Day 186 - Bunny Ears

Happy Easter from our blessed family to yours! Today we learned that Everett really, really hates wearing bunny ears!

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Day 185 - Garden Day

We had the best day playing around and enjoying the gardens with all five of us!

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184 - Easter Reunion

Hooray! It's so amazing for our family to be together again after 3 months apart. Everett has barely taken his eyes off his big sisters. We are certainly feeling blessed!

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Day 183 - Seeing Clearly

Today was absolutely lovely! In addition to getting a break from visiting the hospital, Everett and Mommy enjoyed a wonderful walk through the gardens. Our little guy was marveling at all the beautiful scenery with his new spectacles!

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Day 182 - New Glasses

Today marks SIX months since Everett's stem cell transplant (which used donated umbilical cord blood) to combat the negative effects of Pelizaeus-Merzbacher Disease. This is an amazing journey filled with ups and downs, but we certainly feel Continue Reading »

Day 181 - No-Tear PT

Everett had a fabulous PT session today...not a single tear! Gotta love progress!

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Day 180 - 6-Month Posttransplant Studies

Today, Everett completed the pulmonary function test and chest x-ray as part of his 6 month post transplant studies. The pulmonary function results were immediate, so we know that looked great. We probably won't hear a summary of all the study tests Continue Reading »

Day 179 - Labs Look Great!

Quick visit to the hospital this morning and thankfully (after receiving the blood transfusion yesterday), his labs looked great. The nurse collected blood from the heel today to give the port a break...don't worry, the tears didn't last too Continue Reading »

Day 178 - Transfusion

This morning's checkup at the hospital revealed a lower hemoglobin level (as expected), so Everett received a blood transfusion today. While our visit lasted over 6 hours, Everett immediately perked up afterwards and has been in a playful and silly Continue Reading »

Day 177 - The World's Most Expensive Medication

Today, Everett received his first dose of the world's most expensive medication. That's no really is currently the world's most expensive medication!

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Day 176 - Medication Approved!

Everett had the first of his 6-month posttransplant studies today (an echocardiogram) and will continue to have more scheduled testing over the next week.

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Day 175 - Results Are In

Finally, all of the official lab results from Everett's broken red blood cells are back, and the transplant team has confirmation for what they have suspected for the past few weeks. While it was not news we wanted to hear, it's a relief to finally Continue Reading »

Day 174 - Heavy Head

PT is much harder when your cheeks weigh this much...Everett kept having to rest his head!

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Day 173 - Chubby Challenge

Everett's cheeks have become so chubby it's now challenging for him to smile, but he is certainly happy to see his Daddy again!

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Day 172 - Fresh Air

Everett did well during his PT session this afternoon (no tears...just whining), and then he and Mommy were able to get outside for some fresh air.

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Day 171 - Mommy Smooches

Mommy can't get enough of her chubby guy! Since the steroids are going down quickly, she has to smooch those fat cheeks as much as possible while it lasts.

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Day 170 - Lab Improvement!

Hooray! Labs are continuing to improve! Quick clinic visit today and a stop at the eye doctor to order Everett's glasses...stay tuned for some additional cuteness when they arrive in a few weeks!

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Day 169 - Easy Going Day

Easy going day for our little guy and Daddy. They are eagerly awaiting Mommy's arrival for the weekend. We are hopeful that tomorrow's labs continue to show improvement.

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Day 168 - Weaning off Steroids

The weekly clinic appointment with Dr. Prasad went well! Labs are improving, and we can finally start (slowly) weaning off the steroids! Thanks so much for your continued support and prayers!

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Day 167 - 50% of Fundraising Achieved!

Today marks 6 months that our little guy has spent in North Carolina for treatment at Duke University Hospital. We are so thankful to everyone who has donated to COTA in honor of Everett!

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Day 166 - Promising Sonogram

Thankfully, the sonogram of spleen and bladder conducted on Friday looked good. Still waiting on antibody results, but labs collected today looked better than last week.

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Day 165 - Relaxation

Another low-key and relaxing day!

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Day 164 - Hanging With Daddy

No appointments or infusions today. The boys were able to get out and enjoy some fresh air during a walk through the Sarah P. Duke gardens, but most of the day consisted of Everett and Daddy hanging out in the apartment at Ronald McDonald House.

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Day 163 - Maybe the Spleen?

Our newly chubby boy tipped the scales today at a whopping 19lbs! Unfortunately, the team is still exploring and testing for reasons why Everett's body is destroying red blood cells. One possibility could be found in Everett's spleen, which was was Continue Reading »

Day 162 - Low-Key Day

Low-key day without any appointments. Hoping and praying that tomorrow's labs will yield better results than we saw last week!

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Day 161 - Training Daddy

Today, Daddy was trained by the pediatric surgeon to change Everett's gtube button, which must be done every 3 months. Go, Daddy, go!

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Day 160 - Sore PT

Everett had a good PT session today (which is amazing because the steroids have made his muscles quite sore), although the extra weight of his fat cheeks are certainly making it harder to keep his head up!

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Introducing Owen!

We're so excited to introduce Owen! Owen was the second child affected by a form of leukodystrophy to participate in the same stem cell transplant/DUOC study as Everett (Everett is the fourth).

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Day 159 - World Rare Disease Day

What better day than World Rare Disease Day (2/29/16) to bring some awareness to the disease our sweet Everett is battling: Pelizaeus-Merzbacher Disease (PMD).

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Day 158 - Outing

After a quick visit to the hospital (labs looked OK, so no infusions were needed), Mommy and Everett were able to get out and enjoy the gorgeous weather.

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Day 157 - Weekend With Mommy

Mommy and Everett got a break from visiting the hospital and had a wonderful day snuggling, laughing, and playing together!

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Day 156 - Immunosuppressant Stop

During our clinic appointment today, the team shared results from Wednesday's additional tests. Everett does not have a blood clot or antibodies, so it appears recent damage to red cells and platelets is caused by the Cyclosporine (the main Continue Reading »

Day 155 - Mommy and Daddy Together

Mommy and Daddy are thrilled to be able to snuggle with Everett at the same time, even if it's only for one night. Mommy arrived late this evening and will spend the weekend with her little man while Daddy joins the big sisters back in Maryland.

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Day 154 - Detective Work

Everett's blood work didn't look great today. Since Friday, his blood count (red cells and platelets) have been decreasing and doctors observed an increase in broken/destroyed cells. The same issue arose earlier this month, and they switched him Continue Reading »

Day 153 - Stander Fit

Busy day today! Feeding evaluation in the morning went well...Everett has good oral motor skills and no aspiration. Thankfully, he's finally stopped the horrible gagging that he developed while taking oral cyclosporine.

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Day 152 - Finger Prick

The team decided to give Everett's port a break and check labs with just a finger prick. He was obviously not a big fan, but the tears didn't last too long and he got a few extra snuggles from nurses to make up for it...

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Day 151 - Triple Chin

Check out the triple chin! Of course, the chubby face is a side effect of the recent steroids and won't last forever, but since our little guy has never even graced the growth chart, it's fun to see what he looks like with a little extra neck meat!

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Day 150 - Peekaboo Progress

Peekaboo progress! It may not seem like much (keep in mind the game had been going on for quite a while before the recording started), but prior to transplant, Everett would only lift the blanket off his face and we would need to replace in order Continue Reading »

Day 149 - Feeling Better

Our little fighter is finally starting to feel better: Less vomiting, gaining weight, more playful, thrush is going away, and lab results are improving!

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Day 148 - Stages of PT

Today's stages of PT...

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Day 147 - Good Luck, Randi!

As challenging as this journey can be, Everett's medical team (inpatient and out) at Duke is truly amazing. In addition to excelling at their normal job duties, several nurses have fallen in love with our little guy and will "fight" over who gets to Continue Reading »

Day 145 - Domino Effect

Today's clinic visit provided a perfect illustration of the delicate balance required to manage Everett's health.

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Day 146 - Big Sis Story Time

Everett's favorite time of the day is story time with Big Sister!

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Day 144 - Our Valentine

It's hard to believe our sweet little Valentine is 18 months old today!

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Day 143 - New PT Tool

Everett loves his new PT tool, the Z-grabber, which provides mild vibration to stimulate the senses. It's quite a milestone for him to easily play and transfer toys back and forth with both hands!

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Day 142 - New Shirt

The boys had quite an ordeal today while visiting the hospital for Everett's normal Friday infusion! Poor kiddo spit up all over himself a few times and had to get a brand new shirt from the nurse's gift closet.

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Day 141 - New PT Exercises

Everett got a break from visiting the hospital today and had a chance to try some new exercises during PT.

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Day 140 - Goodbye Cyclosporine!

Goodbye cyclosporine! The team decided to switch to another immunosuppressive medication today because they believe the cyclosporine was impacting Everett's red blood cells. Otherwise, Everett had an excellent weekly visit with his primary Continue Reading »

Day 129 - Great PT Progress

Our silly guy wasn't a very willing participant during PT today, but at least he's making great progress!

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Day 128 - Red Blood Cell Worries

Everett's clinic appointment went great today, and we thought we were going to get a break from visiting the hospital. However, the team called this evening to let us know they are concerned about Everett's red blood cells and would like him to Continue Reading »

Day 137 - Left Side Strengthening

Its such a joy to glance over and see Everett maneuvering and playing with his left arm and hand! Just a few months ago, Everett strongly preferred his right and rarely ever reached for toys with his left without prompting.

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Day 136 - Ready for Daddy

Everett is definitely ready for Daddy to come back...he's finally grown weary of Mommy kissing his big fat cheeks.

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Day 155 - New GoTo Seat

Our LIttle Warrior is looking so grown up today in his new GoTo seat!

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Day 134 - Crawling for FaceTime

Nothing motivates Everett more than a chance to FaceTime with his favorite cheerleaders, the Big Sisters! His coordination and strength have improved so much over the past few months, and we could not be more proud of our little guy!

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Day 133 - Relief From Yucky Meds!

Everett had a great clinic appointment today! Labs look fabulous, and we received approval to begin giving cyclosporine (an oily, yucky tasting medicine that Everett hates and makes him gag) through the gtube, so Everett won't have to taste it ever Continue Reading »

Day 132 - Bonus Screen Time

We've always tried to limit screen time for our children, but today Everett was doing such a great job coordinating and holding the tablet steady all by himself (a definite first), so that rule went right out the window!

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Day 131 - Good Results

Preliminary results are back, and thankfully, no platelet antibodies (which attack healthy platelets) were detected! Thank you for your continued prayers!

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Day 130 - Sitting Strong!

Mommy and Everett spent the afternoon at Duke's Valvano Day Hospital because we were concerned about dehydration and platelets. Unfortunately, the lab results were inconclusive, so we will return tomorrow to repeat.

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Day 129 - Daddy's Sick, So More Mommy Snuggles!

Unfortunately, Daddy woke up sick this morning and had to postpone his return to North Carolina. Even though Everett's immune system is getting stronger each day, we don't want to put him at risk. On the plus side, Mommy gets to snuggle with her Continue Reading »

Day 128 - Low Platelets

Everett's platelets are a bit low this week (and they haven't been low since November), so his team decided to run some tests today. It may just be a side effect of the GVH, but we certainly hope it's not something more serious. Thanks for your Continue Reading »

Day 127 - Sit Up!

Everett got to show off some serious sitting skills today during PT.

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Day 126 - Yummy!

Everett has struggled with gagging while eating over the past few weeks (one of the oral medications tastes pretty awful), so it's great to see him so motivated to eat again.

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Day 125 - Jumping Practice

It may not seem like much, but this is Everett's first attempt to jump on his own. You can tell how completely proud of himself he is from his enormous smile at the end!

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Day 124 - Standing Strong

He may be holding on for dear life, but it's been several months since Everett was strong enough to support this amount of weight on his legs. Go Everett Go!

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Day 123 - Amazing Day!

What an amazing day! Everett was able to sit up using only one arm to keep him steady while playing with the other arm several times today, and each lasted more than 2 minutes!

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Day 122 - Snow Day In NC!

It's not the 30 inches they have at home in Maryland today, but Everett and Mommy were able to get outside for some fun in the 2 inches of snow at the RMH-Durham. It didn't last very long because Everett refused to keep his mittens on.

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Day 121 - Switch Before the Snow

Mommy and Daddy were able to switch off between taking care of Everett in North Carolina and the Big Sisters in Maryland just in time before the blizzard arrived!

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Day 120 - Party Animal

Everett was a total party animal last night and refused to sleep, but at least he was in a great mood! This picture was taken at 1:32am.

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Day 119 - Aced a Checkup

Everett's weekly visit with his primary physician, Dr.Prasad, went well, and the team is pleased with his progress. They even decided to reduce some medications, so that's certainly encouraging!

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Day 118 - Cyclosporine

Thanks to cyclosporine, Everett has been having a good hair year! Cyclosporine is an important immunosuppressant drug that prevents his body from rejecting the transplant. The most noticeable (and humorous) side effect is dark hair growth all over Continue Reading »

Day 117 - Head Control Improvement

It's truly a joy to watch hard work pay off. Despite losing strength during the transplant, we have noticed that Everett's overall head control is improving, and we couldn't be more thrilled!

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Day 116 - Grumpy Little Warrior

Today is the first day the boys have not needed to visit the hospital in weeks, but our grumpy little bear has been inconsolable since about 3am this morning. It's such a challenge when your child cannot understand why they are uncomfortable, and Continue Reading »

Day 115 - Infusions at VDH

Quick visit to Duke's Valvano Day Hospital (VDH) this afternoon for infusions. The only drawback of having a port (instead of central line) so early in this journey is that any time Everett needs IV medications and/or fluids, he must go to the Continue Reading »

Day 114 - FaceTime With Family

FaceTime certainly makes being apart easier, especially when Everett's Big Sisters are always so interesting and entertaining! Prior to the transplant journey, Everett's parents didn't have smart phones or Facebook, so this has been a new transition Continue Reading »

Day 113 - A Break From GVHD

GVHD is not present in Everett's digestive system and his skin rash is very mild (hooray!), but his medical team now believe that one of his medications has made him feel crummy for the past two weeks. They are planning to try a new medication Continue Reading »

Day 112 - Wonderful News!

Gotta love sharing great news! Today, we had a chance to hear the results from Everett's 100-day posttransplant tests. EEG, pulmonary function, ECHO, MRI, and thyroid function all look great! Everett's immune function results are "incredibly Continue Reading »

Day 110 - Hard Time During OT

Everett wasn't cooperative during occupational therapy (OT) today. Unfortunately, it appears the GVHD is still causing some discomfort. We look forward to meeting with his primary physician tomorrow to discuss plans to get him back to his sweet, Continue Reading »

Day 109 - How You're Helping

We are incredibly grateful for the donations to Everett's COTA fund, which have allowed us to purchase some adaptive materials, tools, and equipment to support his development. As a result, he is thriving and getting stronger each day!

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Day 110 - GVHD Flare Up

Since he was taking only oral steroid medications over the weekend, Everett's GVHD rash flared up a little bit. Thankfully, he was able to get IV steroids this afternoon, and everything seems to be clearing up nicely. His wonderful team at Duke is Continue Reading »

Day 108 - Campus Tour

Everett and Daddy were thrilled to get their first day off from visiting the hospital in over a week. Thankfully, Everett has been able to tolerate all of his food for the past few days, and his weight is back on track. (Still small, but "Everett Continue Reading »

Day 107 - Back to PT

After a 9-day hiatus, Everett was able to resume physical therapy today. Unfortunately, like everyone else struggling with New Years Resolutions, he was not a very willing participant. Snuggle time in between exercises was definitely his favorite Continue Reading »

Day 106 - Daddy's Back!

Everett certainly loves his Daddy! These sweet guys will continue to spend approximately 5 hours at the hospital each day so Everett may receive his fluid and steroid infusions, but thankfully it already seems to be helping a lot!

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Day 105 - GVHD in the Digestive System

Everett was a brave little guy during his chest X-ray. Unfortunately, during our normal clinic appointment this morning, Everett's primary doctor said that he is confident that GVHD is present in Everett's digestive system based on his stomach Continue Reading »

Day 104 - And Even More Tests

Everett had a very full day of testing with a sedated MRI, spinal tap, and EEG. Thankfully, all of the procedures went smoothly, and we look forward to hearing the results over the next few weeks.

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Day 103 - 100 Day Tests

Everett will undergo a series of tests this week to ensure that his body is doing well at the 100+ day posttransplant stage. Today included an echocardiogram and pulmonary function test. Thankfully, Everett's heart and lungs still look awesome!

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Day 101 - GVHD Rash

Unfortunately, Everett is experiencing a skin rash caused by Graft Versus Host Disease (GVHD). This means his newly transplanted cells (graft) are attacking his body (host). Thankfully, he is responding well with topical creams, but GVHD can become Continue Reading »

Day 102 - Clinic Help for GVHD

The GVHD rash seems to be getting better after applying topical creams as well as receiving IV steroids and fluids in clinic today. We don't think it's itchy, but Everett is still not feeling like his normal silly self.

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Day 100 - Wow, 100!

100 days posttransplant is a huge milestone! Definitely a time to wiggle, laugh, and celebrate!

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Day 99 - Happy New Year!

Occupational therapy is really just code for fun! Happy New Year Everyone!

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Day 98 - Bath Time!

Everett loves bath time again! When he had his central line, Everett was unable to take a real bath and developed a slight aversion to water. Since he's had the port installed and has a new bath chair, bath time has become one of his favorite things Continue Reading »

Day 97 - Here Comes the Sun!

Everett's future is soooo bright, he needs to wear shades! But finally stopped raining and we were able to get outside and enjoy some fresh air this afternoon.

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Day 96 - Much Better!

Someone is finally feeling better! Everett was able to tolerate all of his food today and seems to be back to his spunky self. We are thrilled with how quickly he has bounced back after catching the virus. Thank you for all the positive thoughts and Continue Reading »

Day 95 - Fighting an Icky Belly

Our little guy was not able to keep any food or liquids down last night, so Mommy took Everett to the PBMT 5200 unit of Duke University Hospital at 2am for monitoring, extra fluids, and anti-nausea medication. After a few hours, Everett felt better Continue Reading »

Day 94 - Stomach Virus

Poor Everett caught a stomach virus from his Big Sisters, and we had to rush him to clinic early this morning for fluids and medications. Thankfully, his immune system is getting stronger every day, and he did not need to be admitted to the Continue Reading »

Day 93 - Family: The Best Gift of All

They're surrounded by new, exciting, and amazing toys, but these Big Sisters still think Everett is the best gift of all!

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Day 92 - Waiting for Santa

Ready for Santa, but our family being together is certainly the best gift of all!

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Day 91 - Is This Real?

This simple conversation pretty much sums up our whole day...

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Day 90 - Christmas Reunion!

After 106 days apart, the Staruk sibling reunion was absolute bliss...until Matilda got sick. Please pray that Everett doesn't catch it too!

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Day 89 - Together Soon!

Everett and Daddy can't wait for Mommy and the Big Sisters to arrive tomorrow!

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Day 88 - Boring Day Hooray!

Hooray for a totally boring day with Daddy at the Ronald McDonald House of Durham!

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Day 87 - Historical Outing

Everett & Daddy enjoyed a field trip today to Bennett Place (site of the largest surrender of the American Civil War). It was great to get out, enjoy the fresh air and explore something new!

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Day 85 - Sneaky Jumperoo PT

Someone loves his new jumperoo! He doesn't realize that it's for increasing his balancing skills and helping him to bear weight on his legs...gotta love sneaking in physical therapy every chance we can!

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Day 86 - Goodbye to Augustus

Everett got to spend a few minutes this afternoon with his PMD Brother Believing in Augustus. It was quite a bittersweet moment...Gus is doing so well, he and his parents are finally headed home to Texas!! The Karl family will certainly be missed, Continue Reading »

Day 84 - Great News!

We received some amazing news today...Everett is doing so well, he only needs to visit the clinic ONCE per week! This is certainly a huge milestone for our little guy! Thank you for your continued prayers and support!

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Day 83 - Visits and Gifts

Everett and Daddy had a great time visiting with friends at the Duke PBMT Family Support Program and picking out Christmas gifts for the Big Sisters!

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Day 82 - Great Labs Again!

Brief checkup at the clinic today! Labs looked great again, so Everett did not need any infusions.

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Day 81 - Campus Outing

The boys were able to enjoy a lovely stroll around the Duke University campus today! Everett's clearly not as impressed with the collegiate Gothic architecture as Daddy.

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Day 80 - Getting Back to Business

Everett was able to catch up on a lot of work emails today...just like his Daddy!

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Day 79 - Great Lab Results

Another great day! Lab results were awesome, so Everett did not need any infusions and the clinic visit was one of the fastest so far!

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Day 78 - Boring, But Good!

A completely uneventful day hanging out at the apartment at the Ronald McDonald House. Boring means that things are going well, so that's certainly a blessing!

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Day 77 - Sweet New Wheels!

New wheels have arrived! Everett's custom Kid Kart stroller/wheelchair properly aligns him and provides much needed stability, which ultimately gives him more ability to play and explore. This seat can be used as a stroller, floor seat, and high Continue Reading »

Day 76 - WBC Getting Better!

White blood cell count is 16.2 today (normal is 3.8-14), so we are hopeful that whatever infection may be present is going away. Without regular labs and visits to the clinic, we wouldn't know that anything is wrong because he's been in such a great Continue Reading »

Day 75 - High WBC

Unfortunately, Everett's white blood cell (WBC) count today is 20 (normal range is 3.8 to 14). This likely means there is an infection somewhere that his body is trying to fight off. We are grateful that he is not showing any symptoms of infection, Continue Reading »

Day 74 - Send Some Christmas Cheer!

Several people have been here's the mailing address for anyone who wants to send along some Christmas cheer: 

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Day 73 - Great Labs!

Lab work looked great this morning, so Everett can resume visiting the clinic only 3 days a week again!

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Day 72 - Physical Therapy is Hard!

Physical therapy practice with Daddy is an essential part of Everett's daily routine to recover from the transplant and fight the negative physical effects of PMD...its just so hard to keep pushing when all he wants to do is lie around.

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Day 71 - Christmas Hopes and Decorations

Clinic visit went well today, and Everett won't need to return until the weekend! He and Daddy are celebrating by decorating the apartment in the hopes that Mommy and Big Sisters will be able to visit during Christmas.

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Day 70 - Physical Therapy Begins

Everett was discharged from the hospital this morning, and the boys were allowed to return to the comforts of the Ronald McDonald House. They weren't allowed to relax for too long, though, because in-home physical therapy finally started this Continue Reading »

Day 69 - Recovering Well!

Despite a little soreness around the port site, Everett is feeling well today. He will remain on the 5200 PBMT unit for one more evening just to monitor his healing, but the current plan is for discharge tomorrow morning back to the Ronald McDonald Continue Reading »

Day 68 - Repair Surgery

Surgery went well! Port was successfully installed and the entire procedure went smoothly. Everett should be sore for a few days, but that is expected. None of the cultures have returned as positive, so we are hopeful that the drama yesterday did Continue Reading »

Day 67 Part Two - Now the G Tube!

As if today wasn't dramatic enough, Everett's G tube popped out while he was crawling around in the crib! He was due for a replacement button this week anyway, but the timing is certainly amazing. On the bright side, at least he and Daddy were Continue Reading »

Day 67 - Central Line Rip - Update!

Everett's doctors have decided that he's healthy enough to have a port implanted tomorrow! While this is happening much earlier than expected, it is a blessing because this means fewer tasks (infusions, cap changes, line flushes, lab draws, etc.) Continue Reading »

Day 66 - Saturday Stroll

Everett and Daddy are off to a great start enjoying the first weekend that Everett does not need to visit to the hospital. The highlight of today was just getting out for a stroll and being able to enjoy the fresh air.

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Day 65 - A Weekend Off!

After a brief visit to the hospital this morning, Everett and Daddy have spent most of the day lounging around. This weekend will be the first when Everett does not need to visit the Duke University Hospital at all...which is a very exciting Continue Reading »

Day 64 - Happy Thanksgiving!

Happy Thanksgiving! Even though this is currently a very challenging time for our entire family, we still have so much to be thankful for! We are especially grateful for everyone who has donated time, energy, and money to Everett's fundraiser with Continue Reading »

Day 63 - Return of the Double Chin!

Everett's weight has finally come back up now that his battle with the BK virus seems to be under control. He's still pretty far from making it onto the growth chart, but we're just glad he's no longer losing weight. It's so great to see his double Continue Reading »

Day 62 - Practice (Hopefully) Makes Perfect!

The boys are off to a great start...they made it to clinic only 1 hour late this morning! Considering all of the things that Daddy has to manage and prepare for the full 8-hour visit to the hospital, this is quite an achievement!

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Day 61 - Released!

Everett is doing well and was released today after a 5-day stay on the PBMT Unit of Duke University Hospital. Now Daddy is flying solo for the first time while managing all of the multiple medications, feedings, and IV infusions...not to mention Continue Reading »

Day 60 - 3-Hour Pass

Everett and Daddy got to escape their room in the 5200 PBMT unit of Duke University Hospital and enjoy a 3-hour pass to the Ronald McDonald House this evening. Even though the apartment is only a slightly larger space, the extra little bit of Continue Reading »

Day 59 - Boy's Club

Daddy and Everett had a great first day together at the hospital without Mommy. If everything continues to go smoothly, they should be able to return to the Ronald McDonald House the day before Thanksgiving.

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Day 58 - Mommy Says Goodbye

Everett and Daddy said goodbye to Mommy today as she returned to Maryland to be with the Big Sisters. Thankfully, Everett is doing well and should be discharged to the Ronald McDonald House in a few days. Please keep Daddy in your prayers and Continue Reading »

Day 57 - Aunt Beans Visits!

After lots of fluids Everett seems to be feeling better. We also think he's enjoying the extra attention from all the nurses! And Aunt Beans got to stop by since she's in town to take Mommy home to Maryland tomorrow.

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Day 56 - Back at Duke

Unfortunately, Everett has lost too much weight over the past few days while trying to fight the BK virus, so he has been readmitted to the PBMT unit of Duke University Hospital. We hope the continuous IV fluids will help his body recover faster.

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Day 55 - Not Feeling So Well

The BK virus is still causing pain, and our poor little guy isn't his normal smiley self today. We are continuing to give him extra fluids around the clock, so hopefully he'll feel more comfortable soon.

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Day 54 - BK Virus

Poor little guy has the BK virus in his lower urinary tract. This is a common problem after transplant, but a total bummer because it's painful and may persist until his immune system returns to normal (in approximately 1 year). Thankfully, the Continue Reading »

Day 53 - Changing Appearances

Another milestone...Everett's eyebrows are starting to darken!!! One of his medications (Cyclosporine), which prevents his body from rejecting the transplant, is known to have the side effect of darkening facial and body hair. We can expect Continue Reading »

Day 52 - Physical Therapy is Hard!

We are thankful that Everett was more active than expected throughout his hospital stay, but the various medications (and constant snuggling with Mommy) caused him to lose considerable strength. Physical therapy is such an important part of Continue Reading »

Day 51 - Getting the Snuggles In

Mommy is desperate to snuggle and play as much as possible before she returns to Maryland in one week!

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Day 50 - Garden Walk

We were able to enjoy the wonderfully mild November weather today in Durham, NC, by strolling through the Sarah P. Duke Gardens. Everett enjoyed the fresh air, but we had to make sure to keep his skin covered because the chemotherapy has made him Continue Reading »

Day 49 - Recovering Wonderfully!

Gotta love great news! Everett is doing so well that our doctor informed us that we only need to provide labs and visit the hospital three times a week instead of every day!

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Day 48 - Appetite is Back!

Everett's appetite is back and in full force! He's been eating so well today that we didn't have to provide any additional food through the G-tube. Our little guy seems to be adjusting well to life at the Ronald McDonald House!

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Day 47 - OR and Clinic Trips

We spent a full 12-hour day at the hospital today, but anything less than 24 hours is a blessing, so we're not complaining!

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Day 46 - Sleepy Boy

Living in the apartment at the Ronald McDonald House is certainly a blessing! Without vital checks every 4 hours, probes attached to his back and feet, monitor lights and machine beeps around the clock, Everett is finally catching up on all the Continue Reading »

Day 45 - Outpatient Care

In addition to a visit to the clinic, we spent the day organizing medical supplies and establishing systems to make sure we don't miss any of the important steps in Everett's outpatient care. Here's an image of his current medications. Several of Continue Reading »

Day 44 - First Clinic Trip

First outpatient visit to the clinic went great! It was certainly a treat to spend only 6 hours in the hospital today.

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After spending 53 days living in the Duke University Pediatric Bone Marrow Transplant Unit, Everett was discharged! Thank you to the truly phenomenal staff on 5200 for providing exceptional care and growing to love Everett as much as we do. We are Continue Reading »

Day 42 - Daddy Learns New Skills

Daddy has spent the last few days learning and practicing various nursing skills, like drawing labs, administering medications, flushing lines and changing caps of the central line, setting up the pump to administer IV medication, changing a Continue Reading »

Day 41 - A Fun Evening

Everett and Mommy and Daddy spent another fun evening hanging out at their Ronald McDonald House apartment for a few hours. We are tentatively looking at being discharged from the inpatient Pediatric Bone Marrow Transplant (PBMT) 5200 unit on Continue Reading »

Day 40 - Fieldtrip!

Everett, Mommy, and Daddy were able to take a 4-hour field trip this evening to the Ronald McDonald House to set up the apartment. Everett absolutely LOVED the freedom of crawling around and exploring in his new playspace!

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Day 39 - Excited for Daddy to Come!

This little guy is super excited that Daddy is on his way to North Carolina (and Mommy is pretty thrilled too)!

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Media Coverage

Our little warrior has been battling in North Carolina for 6 months, and we have reached 50% of our fundraising goal! We are so grateful for the generosity of all of the individuals, businesses, and organizations who have donated and aided in our Continue Reading »

Day 38 - Yard/Bake Sale Success!

We are completely blown away by the success of today's yard/bake sale! We want to give a GIGANTIC THANK YOU to all of the volunteers, shoppers, individuals who donated/delivered items, and the talented bakers of our delicious goodies who worked so Continue Reading »

Day 37 - New Hair!

Everett's hair is beginning to grow back!

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Day 36 - Halloween Fun at Duke!

Halloween fun on 5200! The Duke PBMT Family Support Program set up Halloween-themed games and activities for all the little kiddos. Despite a lack of sleep, our little football loved getting out of our room and seeing all the action!

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Day 35 - New Skills for Mommy

Mommy spent the day learning and practicing various skills required to care for Everett outside of the hospital. After discharge, parents are responsible for drawing labs, administering medications, flushing lines, and changing caps of the central Continue Reading »

Day 34 - No Allergies Here!

New food allergies after transplant are uncommon but still a risk since there is no way of knowing if the cord blood donor had any food allergies. It's important that we re-introduce each food slowly. So far, Everett is good with eggs...his personal Continue Reading »

Day 33 - Teething Hurts!

Poor little guy is cutting two teeth at once! Since he wasn't in the mood to eat anything all day, we had an opportunity to try his Gtube to provide food (Pediasure) for the first time. It otherwise has been used for oral medications. Everett Continue Reading »

Day 32 - Family Traditions

Thankfully, some traditions are still enjoyed even though family is apart. Everett and Mommy were able to FaceTime this evening with Daddy and the Big Sisters to enjoy "It's the Great Pumpkin, Charlie Brown" as a family.

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Everett has officially ENGRAFTED!

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Everett has officially ENGRAFTED!

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Day 30 - Living in a Toy Box

Everett is officially living in a toy box these days. With all his new energy, he doesn't want to stop playing and completely refuses to allow Mommy to take any of the toys away! It's certainly a blessing to have a "problem" typical to all 14 month Continue Reading »

Day 29 - Yummy Food!

Everett's appetite has completely returned, and his nutrient levels look great, so staff were able to end the intravenous Total Parenteral Nutrition (TPN)! The TPN has provided the main source of nutrients to his body since transplant day. This is Continue Reading »

Day 28 - The Rest of the Stem Cells!

On Transplant Day, Everett received only 80% of the donor’s umbilical cord blood. Since then, the remaining 20% of the sample has been in a laboratory and stimulated for specific oligodendrocyte-like cells, which are the cells responsible for Continue Reading »

Day 27 - Energized!

Thankfully, Everett's activity level has returned to his pre-transplant days. However, low platelets (and an unwillingness to wear the helmet all day long) mean lots of extra little bumps and bruises!

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Day 26 - Why COTA?

Lately, several people have been asking “Why don’t you use something easier like GoFundMe?” We chose to partner with the Children’s Organ Transplant Association (COTA) for several reasons. When you make a donation to COTA in honor of Continue Reading »

Day 25 - It's the Simple Things

One small container of fruit loops = hours of entertainment for our happy little guy!

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Day 24 - Tech Master!

Everett's officially mastered a few games on the iPad...which means he's already more tech saavy than Mommy!

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Day 23 - So Sleepy!

Out little warrior has spent most of the day sleeping...hopefully that also means he's spent most of the day growing more cells!!

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Day 22 - Good News!

Gotta love good—albeit slow-growing—news! Today, Duke staff were able to confirm that 98% of the cells currently growing in Everett's body are the donor cells, and his old cells are not present! This is a GREAT step in the success of the Continue Reading »

Day 21 - Get Growing, Stem Cells!

Another roller coaster day at Duke. Everett's lab results (which indicate the number of stem cells growing) were much lower than desired today. Please say an extra prayer for him that those stem cells bounce back quickly and resume growing and Continue Reading »

Day 20 - A Month Goes By So Quickly!

As of today, Everett and Mommy have spent one month living in the 5200 wing of Duke University Hospital. The staff are truly amazing, the food is edible, being away from the rest of the family is incredibly painful, but potentially saving Everett's Continue Reading »

Day 19 - A Little Fussy

Our little warrior has been feeling a bit fussier and less playful today. It's certainly hard work growing new cells!

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Day 18 - Big Smiles

Everett spent most of the day sleeping, but it's certainly heartwarming to see such a great big smile when he's awake!

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Day 17 - Settling Back Down

It's been seventeen days since the transplant, and things are looking great! Everett's rash is gone, his temperature and blood pressure are stable, and the new cells are steadily growing. HOORAY!

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Day 16 - Protecting the Noggin'!

Everett's platelets are still very low, which makes him vulnerable to excessive bruising, especially on his head. To keep his noggin safe, we have a new soft helmet during those times that our little man has extra bursts of playful energy. And Continue Reading »

Day 15 - Feeling Better!

Everett's appetite is finally starting to return! We're taking it slow, but he's finally drinking up to one 8oz PediaSure per day. Blood pressure is a little high, but that's expected due to the steroids and excess fluid our little warrior is Continue Reading »

Day 14 - So Many Snuggles

Today was all about snuggling with mommy. Everett wanted to be held the entire day, which is completely understandable at this stage because of our little warrior's overall achyness and bone pain. With all of those extra fluids from the other day, Continue Reading »

Day 13 - Growing New Cells Is Exhausting!

Growing new cells is exhausting! Everett spent most of the day resting, which is desirable at this stage because growing cells can also be painful. Thankfully, things are looking good, and hopefully the pain shouldn't last much longer.

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Day 12 - Engraftment Syndrome Confirmed!

All signs now point to engraftment syndrome and NOT infection!

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Day 11 - Things Are Looking Up!

Everett's temperature continued to hover between 102°–104° today, and another X-ray revealed some fluid in the lungs. After a small dose of steroids, his lungs have been cleared, and his temperature has been less than 99° for most of the Continue Reading »

Day 10 - Midday UpDay 10 - Midday Updatedate

Last night, Everett's fever fluctuated between 101°–104°, but his respiratory function, heart rate, and blood pressure still look great. No lab results have come back positive yet, but those may take several days.

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Day 10 - Evening Update

Everett received several fluids and a blood transfusion today. With all the extra fluids, this is certainly the chubbiest he's ever looked! The fever has persisted 101°–104° throughout the day, but his respiratory function, heart rate, and Continue Reading »

Day 9 - Extra Prayers Tonight

Extra prayers are needed for our little warrior tonight. Everett has been battling a 103° fever, shallow breathing, and poor circulation all day. So far, the chest x-ray, echocardiogram, and labs look normal, but we're still waiting on several Continue Reading »

Day 8 - Central Line Infection

Unfortunately, Everett has developed an infection at the exit site of his central line, which is used to administer his medications, nutrition, and other fluids directly into his body without having to poke him each time.

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Day 7 - Out and About

It's been one week since Transplant Day, and Everett finally had an opportunity to leave the room and go for a ride up and down the halls for a bit! Keeping that mask on when outside the room is certainly our greatest challenge.

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Day 6 - Playful and Charming

Everett has been up since 2am and has been playing and charming the Duke staff all day long. Haylee hopes this means he will sleep through the entire night so she can get some sleep too!

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Day 5 - Hair Loss

Today marked another milestone in Everett's journey...his hair has begun to fall out. He doesn't seem to be too irritated or itchy, but a thin layer of hair has accumulated in the crib.

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Day 4 - Can't Get This Boy Down

Yesterday's ickiness was mostly gone today with Everett feeling well. Even though he wasn't nearly as energetic as usual, he was very playful for most of the day.

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Day 3 - Feeling a Little Icky

Today marks the first day that Everett is feeling icky. It's a bittersweet moment...while it's hard to watch our little man struggle, it just means that everything is working according to plan. Thankfully, the wonderful staff at Duke can manage his Continue Reading »

Day 2 - Looking Good!

Just one day later, and the rash is gone, lab results are perfect, and most importantly...Everett is still ticklish!

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Day 1 - A Rash, Giggles, and White Blood Cells

Despite a rash on Everett's back (which is a normal reaction and easily treated), Everett and Haylee had a great day! He slept very well last night, and he's been very playful and full of giggles for most of the day.

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Look! We're On TV!

On Transplant Day, a reporter for local television station WHAG visited Tom and the Big Sisters at their home in Middletown for an interview. While there, she also was able to interview Haylee and Everett as well via Skype. Take a look at the Continue Reading »


On Wednesday afternoon, Everett received 80% of the cord blood from the matched unrelated donor. Despite a few hives—a normal reaction to the preconditioning medication—the transplant went perfectly, and he slept the entire time.

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Transplant Countdown - Day -1

Everett was blowing kisses today, the last day before transplant day! He wants to say thank you to everyone who has supported him this far into his journey.

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Transplant Countdown - Day -2

Day -2 was the LAST DAY OF CHEMO, and everything went great! Despite getting only 5 hours of sleep last night and skipping all of his naptimes, Everett was a bundle of energy all day. Thankfully, he fell asleep at a decent time tonight (9pm), which Continue Reading »

Transplant Countdown - Day -3

Despite being hooked up to a ton of additional pre-transplant medications on Day -3, Everett is still his sweet, happy self...just a little sleepier than usual because of some Benadryl.

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Transplant Countdown - Day -4

Everett absolutely loves FaceTime with the Big Sisters and Daddy every day, and sometimes multiple times a day! It's wonderful that Haylee and Everett are able to keep in touch—not just with voices, but with faces!—with the rest of the family Continue Reading »

Transplant Countdown - Day -5

At Day -5, halfway through transplant pretreatment, Everett has completely reversed his days and nights. It's difficult to sleep at the hospital with routine checks, diaper changes every 2 hours, and lots of machines constantly running, and all Continue Reading »

Transplant Countdown - Day -6

Haylee and the wonderful staff at Duke spent Day -6 upgrading equipment to meet Everett's needs. Since he's constantly moving, one of his amazing nurses was able to find him a larger crib with plastic slats! Now, he has more space to crawl around Continue Reading »

Transplant Countdown - Day -7

Everett is still feeling well, but things have been a little more challenging on Day -7. Everett's constant wiggling and rolling around has been placing additional pressure on his central line.

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Transplant Countdown - Day -8

Chemo day #2, and Everett is still feeling great! He's so active that he's constantly getting tangled up in all the leads! If that's the only downside, though, we'll take it!

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Transplant Day Countdown - Day -9

The first chemotherapy day is done, and the countdown to Transplant Day, September 23rd, has begun! (Since Transplant Day is considered Day 0, today's countdown day was Day -9.)

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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.

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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.

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How You Can Help

If you could help make a miracle, would you?

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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.

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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.

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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.

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Can't Keep This Boy Down

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

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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 Continue Reading »

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.

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Happy Birthday, Little Warrior!

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

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And We're...ELIGIBLE!

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

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Tests, Tests, and More Tests!

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 Continue Reading »

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.

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Day 359 - Happy Bath Time!

Unfortunately, Everett was not able to keep down his morning meal today and seemed nauseous for most of the day. We are very concerned, but hopeful that the GVHD (graft vs. host disease) is not attacking his gut.

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