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September 7, 2019 - Answered Prayers

It's been twelve hours since the stem cell (bone marrow) transplant, and the babies are doing GREAT! Emily reported this morning that both girls are sleeping deeply, so they're getting much needed rest as they begin to heal. The donated cells will soon "take" and begin populating their bodies with a strong, healthy immune system. PRAISE GOD!

The procedure was scheduled for 4pm yesterday but was delayed for a couple of hours. Then at 6pm, the entire transplant team surrounded the family in celebration and well wishes. They sang "Happy Transplant Day" to Presley and Riley and presented them with beautiful, hand-made posters, signed by them all. (Here's a video link - not sure if it'll work.)

The transplant could not have gone better! As Emily texted this morning, "The dr said the transplant could last all night if they have reactions but they were both done after two hours and no reactions. They played and laughed and are sleeping hard now. Everyone was shocked."

We know there will be some rough days ahead. But this giant step is exactly what we prayed for. Thank you, God! Thank you, doctors and nurses! Thank you, generous donor! And thank you all for praying so hard and for being there. Now we move forward, as these little girls finally move toward experiencing a normal life. Today is a good day.

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September 6, 2019 - Transplant Day

It's here! The day we've been waiting and working toward for months: stem cell (bone marrow) transplant day. The transplant will take place sometime this afternoon, administered through the babies' center line ports - much like a blood transfusion.

Over the past week, Presley and Riley have been receiving intense chemotherapy treatments (three types of chemo, lasting hours each day) to suppress what little immune system they have. This will stop their bodies from attacking the "foreign" cells from today's transplant. The donated marrow contains stem cells that will replace the girls' insufficient marrow and become their new, healthy blood system - complete with a strong, functioning and complete immune system.

Isn't modern medicine miraculous?

The twins face three main concerns right now: The side-effects of chemotherapy (which could continue to escalate in the coming days); their response to the donated stem cells (which could be attacked or rejected by their own cells - something called Graft vs Host Disease, GVHD); and the simple but crucial need to remain well as their bodies heal. Please continue to pray about these things.

But the babies are doing extremely well and remain very healthy. And the donor match is incredible. We have every hope for success and minimal complications - if any.

So many of you are following this journey, and your support is so appreciated! Riley and Presley are amazing, precious girls! They're just rolling with whatever they're given, and they somehow keep smiling and fighting. What a humbling lesson for us all. Their biggest struggle seems to be missing each other - their best friend and constant companion. They have a bond that even Shane and Emily's comfort can't soothe, which of course is heart-wrenching for a parent to see.

As for Emily and Shane, they just take it day by day, doing what's needed to move forward. They're exhausted but hopeful, tired but committed, and so very grateful for friends, family and the caring community that has surrounded their family.

Today is a great day. We're so thankful as Presley and Riley receive this life-saving gift!


September 3, 2019 - Halfway Through Chemo!

Yesterday marked the end of Chemo Day 2 (of four total), so the girls are halfway done with that part. Thank the Lord! They're receiving three types of chemo each day, and it's pretty intense.

The center line ports were installed surgically on Friday, August 30. Like the little troopers they are, both girls handled it well. But it was a long day, and they were exhausted and a little sore by the end of it. Still - they managed to smile and play as usual.

Chemo started at 5am Sunday, September 1. The poor babies had a rough first day: fever, chills, nausea and vomiting. Little Presley couldn't stop shaking, and little Riley cried inconsolably, only managing to taking one ounce of formula all day. The girls were treated with anti-nausea medicine, and it really helped.

Yesterday was chemo Day 2, and they did great! The fevers and nausea were gone, and they were able to eat well and play like the happy girls they are. Thank you, Jesus! Two more days of this, and they'll be over this necessary evil.

Thank you for continued prayers for these beautiful wee girls and their parents, Shane and Emily. This is an exhausting battle, and your support makes it possible to keep going.


August 29, 2019 - Tomorrow a Milestone

It's been a few months since this blog has been updated. Presley and Riley are 7 months old now and thriving! They're happy, healthy, growing - and ready to take a giant step forward in their journey toward full health and a normal life.

Since we left off, the doctors have determined through genetic testing that Presley and Riley (whom we've also learned ARE identical twins!) have severe neutropenia due to a sort of freak accident during formation. The doctors believe that when the girls' zygote separated into twins, the ELANE gene was compromised. The ELANE gene is responsible for healthy neutrophils, the power-punch bacteria fighter of the immune system, which the twins cannot maintain on their own.

By receiving daily injections of immune boosting GCSF from Daddy (and also from "Auntie" Ansley when she came to help this summer) at the direction of Seattle Children's Hospital, the girls have been able to live outside the hospital and remain healthy. But they are carefully monitored and must be treated with antibiotics immediately whenever there's the slightest chance of infection. Mild illnesses easily fought off by another child, could become life-threatening to Presley and Riley.

Without a bone marrow transplant, the girls' condition will not improve. They would also have a much higher chance of developing leukemia when they are older.

Working with Seattle Children's Hospital and the Seattle Cancer Care Alliance, Shane and Emily have spent the past several months preparing Riley and Presley to receive the life saving bone marrow transplants. They've found a donor who is a fantastic match - an anonymous, 26-year-old male angel who lives in Europe; that's all they know. May God bless this generous person who is saving the lives of two precious little strangers!

Tomorrow, August 30, the girls will be admitted to Seattle Children's Hospital and each have surgery to install a port through which medicine can be administered over the coming weeks and months. On Saturday they'll receive anti-seizure medicines, to prevent that possible response to the treatments. Beginning Sunday, September 1, they'll have four days of chemotherapy, and then most likely a day of rest. Finally, the babies will receive healthy, donated bone marrow by transfusion, probably on or about the 6th of September.

Throughout this time - and for at least the next month - Shane and Emily will be quarantined with the twins, living at the hospital. The girls will be closely monitored for complications, and they will be treated medically as needed. To remove any chance of infection, the twins aren't allowed to share a room, although the family will be given a common area during the day to be together if everyone is feeling well. Emily will stay with Presley, and Shane will stay with Riley. 

When Presley and Riley are considered "stable" and ready, the family will move to the nearby Ronald McDonald House and stay a few months more, while the girls continue to be seen several times a week at the Seattle Cancer Care Alliance.

And finally... we're hoping and praying that the family will at last be HOME in Tacoma, together as a family for the first time, by January 22, 2020 - the girls' first birthday. And what a celebration it will be for these miracle babies!

Thank you all for your prayers, your support, your concerns and your love. Please continue to uplift this dear family as they meet this next challenge. And please also pray for the anonymous donor who is making this possible. God is good!

Meanwhile, here are a few photos from the past few months. Sorry for the long post!


April 25, 2019 - Coasting Along and Doing Great

Now that the babies are in the U.S. and doing well, we're going to pause on Caring Bridge updates for now.

Shane is awaiting confirmation of his transfer orders to Tacoma. He should hear something within the next month or so. If for some reason Tacoma doesn't work out (if they don't have a position open), the family will be stationed someplace else in the States. The babies cannot travel overseas until they're at least five years old, due to their neutropenia.

Once his duty station is confirmed, Shane and Emily will work on finding a house so they can get settled into The American Dream. 😊 Shane will bring home the bacon, and Emily will have her hands full with babies and home. 

For now, all four spend most of their time in the Madigan Hospital family room. The girls' neutrophil levels have returned to zero, but the doctors remain optimistic about their health, as they meanwhile await new genetic testing results. The girls are allowed visitors and outside excursions, and soon they may be discharged from the hospital, returning only as treatment requires. What that looks like, exactly, hasn't yet been decided.

Although part of the girls' white blood system is deficient (the "neutrophils"), the other four parts are working in high gear. So they do have some immune protection. Presley and Riley are happy, thriving and right on track for everything in their age group - even receiving age-appropriate immunizations. The main goal right now is to keep them healthy and safe from harmful bacteria, while allowing them normal "baby life."

Any major health updates will be posted here, but for now they're just coasting along and doing great.

Thank you for all your love and prayers. 

April 17, 2019 - Livin' Large in Madigan Hospital

It's been just over a week since Presley and Riley left the hospital in Pordenone, Italy. What a difference a week (and US health care) makes!

Last week, the girls had never left their birth hospital, where they were quarantined in a newborn ICU unit. They were hooked up to heart monitors 24/7. They'd never been touched or held without full surgical garb, and their neutrophil levels (the heavy hitters of the immune system) were at zero. They'd not had treatment for their immune deficiency since being three weeks old.

This week, they're livin' large at the Madigan Hospital on the joint base Lewis/McChord in Tacoma, WA. Mommy and Daddy (aka Emily and Shane) can hold, kiss and cuddle them skin to skin. No more surgical garb! They share a family room, so they get loved by Mommy and Daddy all day and all night. They're allowed visitors by other healthy moms & kids who stop by to say hi....

AND they're responding to treatments! Shooting for a neutrophil level of 1500, Presley's neutrophils had already reached 700 by Sunday. Riley was lagging a little at 200, so the doctors bumped up her G-CSF dose a bit. But it's working! The girls are finally getting better. The care team is actually transitioning them to go home.

Meanwhile, the doctors are re-doing the genetic tests that were run in Italy. They're looking with fresh eyes for insight to the girls' condition. That should offer direction for any future treatments necessary and a road map for the future.

Life is good and getting better. 😎 


April 14, 2019 - The Journey is Over: Safe in Madigan!

Journey complete! After leaving Aviano, Italy last Monday, then a short stay in Landstuhl, Germany, then a grueling trans-Atlantic Flight to Washington DC, an overnight nap and quick turn for a 10-hour journey (including two stops) to Madigan/McChord Base in Lakewood, WA...

They're here!

Shane, Emily, Presley and Riley arrived safe & sound (and jet-lagged) last night at Madigan Hospital. This is the girls' final destination for treatment for their congenital immune deficiency. They began receiving treatment almost immediately on arrival in Germany, so already their progress is in full swing.

The girls did pretty well on the flight, a little fussy, but overall just amazing, considering they've been sheltered in a little quarantined cocoon since birth! This is their first time leaving the Pordenone Hospital since they were born January 22.

Upon arriving, Shane and Emily received the most wonderful news: they're no longer required to gown up to be with the girls! The hospital explained carefully why this isn't necessary (no details to share here), and so for the very first time, Shane and Emily are able to touch and kiss their babies without barriers. Praise you, God!

Right now they're staying in a newborn "family room" at the Madigan Hospital, so parents and babies are all together. Today Shane and Emily will meet with the care team to formulate a care plan for the days ahead.

They're hoping to get a place at the nearby Fisher House (like the Ronald McDonald house, only it's military).

Meanwhile, they're settling in and moving forward. What a wonderful day!


April 11, 2019 - Waiting is the Hardest Part

It looks like one more day before the trip to Washington DC. Shane and Emily's things were picked up this morning, but they won't actually be leaving till 4:30 am tomorrow.

Meanwhile, hats off to Landstuhl Regional Medical Center, the military hospital where Presley and Riley are receiving care. Emily said the staff is amazing, and the girls are doing great there.

Less than 24 hours, and then on to Washington DC!