Another year in isolation? That’s great news for one San Diego family – The San Diego Union-Tribune

On a recent grocery run, Katie Luckesen noticed something new: she wasnt the only shopper wearing a face mask and gloves.

And this time, she added, I didnt get any funny looks!

If anyone was ready for the current era of social distancing and hyper-cleanliness, it was the Luckesens. For more than two years, this South San Diego family has lived in lockdown to protect their youngest member.

Charlie Luckesen was born in November 2017 without a thymus, the gland that transforms stem cells into T cells able to fight infections and disease. Lacking this essential piece of the immune system, the child could be killed by even a minor illness.

This is a rare condition: athymia afflicts only five out of every 1 million babies born in the U.S. Theres only one cure, a transplant, and only one place in the U.S. that performs this operation, Duke University.

On March 10, Charlie became that North Carolina medical centers 102nd thymus tissue transplant. Hes home now, yet the Luckesens will self-quarantine until the new organ produces a full set of robust T cells. That may take up to a year.

Another 12 months in lockdown? To Charlies mom, that prospect is thrilling.

I finally feel like I can see the light at the end of the tunnel, she said.

Faith has played a major role in Charlies story. It has sustained Katie Luckesen and her husband, Lt. J.D. Luckesen, a Navy chaplain. It has steeled them for the possibility of losing their son. And it has reminded them on this Easter Sunday that with faith, miracles can happen.

Katie Luckesen said the past two years have been a trial and a test of her faith. She couldnt have gotten through it without what she calls a lively hope, a line from Chapter 1, Verse 3, of the Bibles First Epistle of Peter, about the miraculous resurrection of Jesus Christ on Easter morning.

Easter is a reminder to myself that even if Charlie would die that it wasnt the end, she said. I praise God for the knowledge of the resurrection that reminded me that mortal separations are temporary, and this gave me the hope and strength to carry on when days were hard.

The atonement of Christ becomes even more personal this Easter as I think that he suffered so that he could succor me in all of my trials, she said. I have come to realize the power and peace of the praying for courage to have the strength to say not my will, but thine be done ... We didnt come this far, only to come this far.

For most of his young life, Charlie had been on Dukes transplant waiting list. These were tense times for the Luckesens who, through social media, shared their trials and triumphs with other families engaged in the same struggle.

All pray for a transplant, but not all of these prayers are answered. The average lifespan of someone born without a thymus is two years. Last November, on Charlies second birthday, one of these children died. A week later, another followed.

I feel like we are living on borrowed time, Luckesen said then.

Complicating matters was a Food and Drug Administration ruling in December, withholding approval of RVT-802, a patented process used to culture thymus tissue and prepare it for transplantation. In the end, Duke won the FDAs permission to continue using the method under a research protocol.

Finally, the day came. On Feb. 17, Charlie had a quick checkup with his pediatrician, Dr. Katie Lively Swartz of Balboa Naval Medical Center Just to make sure things went smoothly, the doctor said. Then the boy and his mother boarded an air ambulance for the cross-country flight to Dukes campus in Durham, N.C.

There, Charlie underwent a battery of tests and was treated with pre-transplant medications.

He had a strong reaction to that, a big seizure, Luckesen said. He was able to power through it.

The toddler had recovered when a fever racked his body. Worried that this might indicate a serious ailment, doctors at Duke ordered a full body CT scan.

This was the worlds most expensive sinus infection diagnosis, she said.

On March 10, Charlie was wheeled into an operating room in Duke. The long-awaited procedure took a mere three hours.

Its a really minor, anti-climatic surgery for how monumental it is in our lives, Luckesen said. They put tiny pieces of thymus up and down his leg.

Dr. M. Louise Markert, a Duke professor of pediatrics and immunology, pioneered this technique in 1993, inspired by infants who undergo heart surgery.

At birth, the thymus is located over the heart. When heart surgeons operate on infants, they often need to remove some thymus tissue to gain access to the heart.

The material that is cut away can be used in a thymus tissue transplant, but only when parents agree to literally donate part of their own child to strangers.

Katie Luckesen holds infant Charlie in the NICU at Rady Childrens Hospital in San Diego in May 2018.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

This is a wonderful story of parents who, and you can imagine the stress they are under, are able to think about someone else, Markert said. The only way this can be done is through the goodness of peoples hearts.

Donated tissue, which is tested to ensure its compatibility to the recipient, is usually implanted in the thigh muscle. In Charlies case, about 40 pieces of thymus tissue were stitched into his left thigh.

It went according to plan, Markert said of Charlies operation. I think this one went very smoothly.

When Charlie and his mother arrived in North Carolina in February, the coronavirus was just beginning to disrupt life in the U.S. A month later, with Charlie recovering at Duke, Luckesen worried the pandemic would delay their trip home.

In fact, an air ambulance flew mother and child back to San Diego on March 26. Charlies long-term prospects are bright the survival rate for thymus tissue transplant recipients is 72 percent, which includes patients with other health issues.

Deaths, Markert said, are rare once a transplant patient survives the first year or two.

The Luckesens will remain in isolation as Charlies newly-acquired thymus tissue equips him with functioning T cells. This may mean another year of stringent precautions. Charlies father is remaining at his post at the Marine Corps Recruit Depot, rather than risk infecting his wife and children.

Were treating this like a deployment, she said.

This adds another layer of stress on the entire family, she acknowledged. But this is the best we can protect Charlie.

Charlie,2 and his mother, Katie Luckesen recently returned from North Carolina where Charlie underwent Thymus transplant procedure at Duke University Hospital.

(Nelvin C. Cepeda/Nelvin C. Cepeda/The San Diego Union-Tribune)

While most Americans are new to the demands of self-quarantining, the Luckesens have been there, done that and disinfected it all.

Were pros, Luckesen said.

Charlie was nearly 9 months old before he left his sterile room at Rady Childrens Hospital. Once the baby came home, his siblings Jack, who is now 8; William, 6; and Amelia, 5 were taken out of school. Classes are now held at home.

Visitors are rarely allowed inside, and only after slipping on hospital gloves, surgical masks, gowns and booties. These supplies are stored by the front door, alongside a stockpile of hand sanitizers and disinfectants.

Charlie Luckesen, 2, enjoyed playing with his three siblings, William, 6; Jack, 8; and Amelia, 5, during their playtime on the front yard of the familys home.

(Nelvin C. Cepeda/The San Diego Union-Tribune)

A Roomba roams the downstairs, vacuuming up stray grit, while Luckesen constantly washes, wipes, cleans.

Despite the occupation of Charlies father, the family stopped attending church services in person long ago, turning to internet services in order to avoid germs.

The children play in the backyard and on the front lawn, but only with each other. They walk in the neighborhood, but avoid other pedestrians and all crowds.

Given her hard-won expertise, Luckesen is sometimes asked how to handle social distancing and other protective measures being adopted in the coronavirus era.

My biggest advice, she said, is just to be diligent.

For this family, that means wearing gloves and face masks on any journey outside the home. On their return, they shower and change into fresh clothes, dropping the previous outfit into the washing machine.

Theres a lot of hand washing in this household, and lot of forgiveness.

You have to give yourself grace, to let things slide that dont matter as much, Luckesen said. My kids probably have too much screen time, probably watch more TV than they should. But I have to keep the house clean for Charlie.

Charlie was slow to develop, held back by his condition and his treatments. (One example: his frequent need for diuretics hindered his absorption of calcium, leading to a fractured vertebrae.)

When he came home from Duke, though, he seemed eager to make up for lost time.

Hes doing great, Luckesen said. Hes pulling himself up and he loves to take steps and walk with me, holding on.

Charlie will need close monitoring, and the family needs to live in isolation, for some time. Every week, the toddlers blood samples will be checked by physicians here. Every month, his T cells will be surveyed by specialists at Duke.

But I finally think we are starting to see the finish line of a marathon, she said.

Life is changing, in ways that allow the Luckesens to hope.

This will be the first year he wont be in the hospital for his birthday, Luckesen said of her youngest child. Nobody wants to be in the hospital for their birthday.

Today the family will celebrate Easter not only separated, with J.D. stationed on base at MCRD, but without a traditional church service. But Luckesen said she plans to connect with her family over FaceTime today and share her faith with others.

We can come together in our families at home. We can celebrate Easter without having to be in a building. We can come together through technology and worship through one of the many online church services. We can come together in reaching out virtually or over the phone with our relatives, she said.

For me the celebration of Easter means rejoicing in the resurrection of Jesus Christ and sharing my witness and testimony.

Staff writer Pam Kragen contributed to this report.

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Another year in isolation? That's great news for one San Diego family - The San Diego Union-Tribune