The Tao of the ‪#‎LukaTheLion‬ Foundation, Days +93-94: Today is ‪#‎UndiagnosedDay‬

This photo was taken after Luka got a shot of antibiotics after being diagnosed with meningitis at 6 weeks. We were waiting for his first central line placement surgery so that he could get access to intravenous antibiotics as his veins couldn't even hold a peripheral IV due to being over pricked for weeks, weight loss and dehydration. I was happy because he was alert and making eye contact again after going backwards developmentally. This moment marked a lot of tension medically, for being essentially "undiagnosed" brought out strong reactions in different medical providers. Most doctors (the Hem-Onc team) wanted to treat Luka's symptoms, even if they didn't understand why it was happening; yet one provider (on consult from another team) suggested that he was just a "fussy baby." I think we can all agree that Luka wasn't fussy. At all. He was born with a rare and undiagnosed disease that is thought by experts to be unique to him.

This is just one moment of many of what it's like to be undiagnosed. This story focuses on our medical details of our undiagnosed journey, and I could write another 16 pages on the other aspects of disability paperwork, the emotional toll, and lack of access to support and services when not neatly in a diagnosis code.

We are just one family who lives in the reality of undiagnosed, but there are millions of others who face rare disease and don't even have a name for their condition, let alone a treatment plan. Makes me wonder if our nickname for Luka's condition, or "Luki SCID," that we used to joke around about will ever become a reality.

Thanks to the inspiration from Gina at Rare & Undiagnosed Network RUN and her work on the ‪#‎UndiagnosedAlliance‬, here is: Our Rare + Undiagnosed Story: Luka and Maks.

The Tao of the #LukaTheLion Foundation, Day +1

Luka, the day after his bone marrow transplant infusion, July 4, 2015, reminding us that "I have arrived"

Luka, the day after his bone marrow transplant infusion, July 4, 2015, reminding us that "I have arrived"

Goodbye Illusions, I Have Arrived. 

One of the most interesting parts of life,I’ve found, is removing illusions. Moving past what might be. Some people have asked me howwe did it all this time — not knowing what exactly happened to Maks, not ever really having a clear diagnosis for Luka, and then not knowing where everything would go when Luka’s condition was considered “not compatible with life,” and the bone marrow transplant treatment determined to be “life threatening.” Personally, you get by through not creating illusions — the fear of what might be — take things as they come. (And I asked doctors and nurses a bazillion questions since it helped me understand what they knew and what they didn’t quite understand based on the cannon of medicine, thus Luka’s rareness). The world is not currently prepared for seeing things without illusions — just turn on the news or any debate — yet in the medical community, this way of being, almost Taoist at its core — is how countless, dedicated nurses, doctors, chaplains, social workers, physical therapists, child life therapists, custodians, and so many more go about their daily lives serving kids and families in the hospital and clinic. I learned — especially in the first 5 months of Luka’s life how to not hang onto waiting for that results, how to not imagine outcomes until there was evidence, how to see what was happening with changes in his symptoms as opposed to what I imagine is happening. Always grounded in the moment, but open to what is next. Perhaps that’s why I knew what was really happening as Luka was wheeled away from the 5th floor for the last time. As hard as that sounds, I never had the illusion that he would pass away, just as I never had the illusion that he would live on to an older age. And I think because of this, we didn’t have as many problems. Maybe that’s part of the reason why I’m still standing, coherently living my life, moving forward but taking pauses to stop and reflect as needed. And the need is certainly there when it presents itself. Perhaps that’s why I’m able to accomplish this most difficult of tasks.

Which isn’t that much different than initiating, teaching myself, asking for help, receiving it, being persistent when avenues didn’t work out — not creating illusion, but taking it all for what it is — which led me to 7:18 am today, January 28, 2016, when the Luka The Lion Foundation was officially incorporated in the state of North Carolina. In what is probably the most joyous of documents I have received from a governmental agency, the official letter reads: “To all whom these presents shall come, Greetings: I, Elaine F. Marshall, Secretary of State for the State of North Carolina, do herby certify the following and hereto attached to be a true copy of Articles of Incorporation of Luka The Lion Foundation.”

So very true, indeed. Goodbye illusions, I have arrived — my favorite Luka t-shirt. Photo taken on Day +1 after his transplant, and here we are Foundation Day +1. I couldn’t have written this story called our life better myself.

“To the Taoist, unhappiness is the result of being guided by illusions – such as the mistaken belief that man is something separate from the natural world. Problems, be they economical, ecological, or whatever, are caused by a failure to see What’s There. Unpleasant feelings come from illusions: fear from What Might Be (which hasn’t happened yet), sadness from What Might Have Been (which is- not necessarily what would have been), and so on. Piglets, living in fear of What’s Coming Next, What Can Go Wrong, What If I Do Something Foolish, and such, cannot enjoy and make the most of the present moment. Later, they look back and realize that they didn’t live it. And that realization makes them feel more inadequate than they already did. However, because of their sensitivities, their strong experience-filing-and-recalling memories, and their cautious, one-step-at-a-time natures, Piglets-far more than Eeyores and Tiggers, Rabbits and Owls-have the ability to rise to a challenge and accomplish the most difficult tasks, once interfering illusions have been cleared away.


Day 49 of Bardos: We Did It.

We watched a lot of sports with #LukaTheLion  both at home and at our hospital home. Arsenal, UNC, US Women’s Soccer, Polska and France national soccer teams, Cubs, Panthers, and Clemson by osmosis. It’s funny, for all these teams have been quite successful recently. Sports helped us all pace ourselves on a daily basis — “what’s next?” was a common phrase asked of each other when one sports event was wrapping up. Sports helped us focus on something that was also outside of our control, but asked us to temper our feelings. Sports helped us feel a sense of belonging to something bigger than ourselves, a community all pulling in the same direction – for better or for worse. Sports gave us a short term future, for that season it was a weekly event. Sports gave us next year if it wasn’t ours to win in the end. Sports helped us practice that feeling of hope and faith that someday it could all happen our way. So, as you can see — we share a lot in common with the billions of sports fans out there in the world. We transpose our feelings for what’s happening in our own lives onto the teams we cheer for. We extrapolate meaning of what surrounds us by using sports metaphors especially as a way to connect with others on how we feel.

We were told many times by medical providers that having a child born with a rare primary immunodeficiency disease, then having a bone marrow transplant, and subsequent complications was much like a triathlon. We used the metaphor wildly through the journey. So when I was asked today by a sweet soul how I was feeling as this is the last day of Bardos, I replied without thinking with an extension of our on-going sports metaphor — “Like I’ve ran a few marathons and there’s still more to run. Breaks needed at times, but mostly with inspiration and wind behind my back, especially with a lot of souls cheering us on.”

So, it’s true you see. This metaphor of sports is also the same for this community of a little secret Facebook group that started with 30 people a little less than a year ago into what it is now. Never in my wildest dreams did I think that an idea to share Luka’s sweet soul and personality, despite his extreme disease and treatment would lead us through this journey. Counting down and up and then up again the dates, having something specific to look forward to on a daily basis helped run this race. I always just wanted to honor Luka, and Maia, by writing how they and we traveled through this triathlon and its aftermath. I wanted you all to see especially how Luka always did his best no matter what was handed to him. And so my writing was a lifeline between you who care and he who received that love one way or another. Yet, it was perhaps me who gained the most in it all. Writing helped me process all the training, endurance, knowledge, and so much more that went into pacing myself in something that I still have a hard time grasping completely. Believe it or not, but I still have pinch me moments and not in a numb or denial kind of way — but in a “wow, this all happened, is happening, and we are here to tell it.” Being Luka’s caregiver coach was the greatest honor I could ever have after being a mother. And again, I learned the most cheering him on and telling you about it. For this, thank you for your support, for cheering us on always. For making this triathlon and beyond possible. I see your comments and messages much like signs along the way — making you smile, feel inspired, and keep running.

Regardless of the outcome of the triathlon, I’m the most proud that we all tried our very best. We were watching ice skating tonight and Maia was very interested in Maia the ice dancer who skates with her brother. They did very well and the crowd gave a standing ovation. The judges gave some of the highest scores in history. They exceeded expectations by trying their best. Our Maia was convinced that this ice skater Maia was going to win, and after we watched the next pairs, we talked about how even though they had tried their best — sometimes your best isn’t always good enough to win. And that’s ok. It’s yet another extension of how proud I am of Maia who at 2 years old loved her brother with all her soul, not even completely understanding why he went to the hospital and clinic so much. As a 3 year old it sank in yet she loved him even more. As a 4 year old she cheered him on as he got a bone marrow transplant and was hospitalized for months at a time. She never got mad. She never got jealous. She only wanted him to feel better. She held it together for her first day of school without her family all home. And so much more. In all of Luka’s triathlon of life — I seriously cannot be more proud of our children and how they did their very best. Even through that last finish line and beyond.

So, it may have been fitting that on this last day of Bardos to honor Luka’s soul as he goes through a re-birth, as do we, that we went flying down a mountain (hill) on a sled this snow day. Luka was born when there was snow on the ground here after the craziest winter imaginable. I had visions of coming down a mountain as his life was coming to its finish line here on earth. Remember, I just didn’t know which home we were going to — yet I must have deep down. We were just going to different homes when we came down to the mountain. So, today, it was the three of us sledding without abandon, fearless really — perhaps we are too comfortable with UNC hospital to care if we end up there — and we went flying down the mountain on sleds, trying our very best to live life to its fullest.

Just like Luka — lets all always remember to try our best, for it doesn’t matter how we finish the race. Fitting that my first words after I finished reading the last line of the King of Prayers tonight was “we did it.”

We did. Now let’s see what the next triathlon has in store for us.

Day 1 of Bardos: "O Lions Amongst Men"

As you may have gathered, I follow spiritual assignments very closely. At the reception yesterday, some of you had the pleasure of meeting Stephanie, the wise one. She came bearing gifts as she always does. This gift was a packet with instructions on how to read “The King of Prayers” for 49 days after the body has dropped. It is a Buddhist tradition to help the soul find its way through the Bardos and reincarnate. The Bardos being a Tibetan word meaning “intermediate state.” It can be loosely used as the state of existence intermediate between two lives on earth.

Stephanie hoped she wasn’t imposing and I quickly shouted, “You are my spiritual guide – I do what you say!” We were both awestruck by the uncanny parallels between the 49 days of Bardos, and the fact that our lionsurvived his virus/cytokine release syndrome/HLH for 49 days from PICU room with the zebra to PICU room with the lion. As Stephanie put it, “maybe he had his own Bardos.” Honestly, I would not put it past Luka to have reached such a heightened level of enlightenment. We did call him “Buddha baby” sometimes. Perhaps he did take it upon himself to disconnect his consciousness from his physical body, as that is essentially what he did for a majority of those two months. His obsession with lions especially in those last days of miraculous awakening was definitely more intense than it was before. And his peaceful transition was indeed perceived as an opportunity for liberation — as the medical consults and exams stopped, machines didn’t beep as much, and we could all focus on spiritual healing and paying respect by giving his soul permission. I truly believe that Luka had a level of transcendental insight in his own 49 days of Bardos, and it is just now that we are discovering this. He was finding his way through the Bardos, and now it is our time to do the same for his soul.

So, I followed the spiritual assignment andeven read the first few pages to Maia Bee as a bedtime prayer. We were struck that the first line was translated as “O Lions Amongst Men.” As this Pride can attest, our Luka was indeed a Lion amongst men.

Both Zach and I have remarked that Luka’s coffin, as beautiful as it was and is, didn’t give us a feeling that his soul was there. We both felt that his soul was lifted during the day on Tuesday as he said “mama” and waved “bye bye.” But what we did feel is that the gorgeous watercolor painting of a fierce, brave, majestic lion that was resting right below the coffin was giving us both strength and wisdom during the service just by the stare of that eye. For, that lion was painted by none other than Bren, our PICU nurse on those last two days as Luka transitioned eternally to the Lion. The same Bren who is Bruce‘s sister and kindly donated all proceeds from the purchase this watercolor print to the future Luka The Lion Foundation. Her creative representation and generosity is just as awe inspiring as our brave Luka, our Lion King.

May you feel invited to share with us in reading this prayer, King of Prayers, for the next 49 days. 

The beauty lives on through these gorgeous watercolor prints, perhaps a holiday gift for your Pride. Bren is so graciously donating 100% of proceeds from the purchase of these, "Luka The Lion" by Bren Sparling prints to the future Luka The Lion Foundation. Click here to order your print. 

BMT Day +156: Words of Rememberance

Written and Shared by Julia Fisher, Luka's Mom, at his Celebration of Life

Luka Charlie Fisher — Our Guiding Light, Always Remember to Roar

We will begin with the most important voice, our sweet Maia Bee. When we asked Maia what she wanted to share with you all about her brother Luka, she quickly said “being happy and laughing.” And then even more quickly told us to call you all “silly chickens.” Which is a term of endearment. I promise.

And laugh they did — brother and sister. They put underpants on each other’s heads. They chased each other around the house in circles. They danced to Happy Feet. They demanded and devoured applesauce. They enjoyed swinging. They played trains. They shared a love of Paw Patrol. They went for walks in the car to find the Flying Pig in our neighborhood. They did flips over Uncle Isaac’s power wheels car. They made each other happy. They made each other laugh. Those little chickens.

But in all honestly, Maia wanted you all to know the following, “I love my brother Luka and he’s an angel now.”

An angel he is and loved for eternity indeed. We find comfort that he is not alone, welcomed by a choir of angels who also gained their wings. His big brother Maks, great-grandparents including Big Charlie for whom his middle name honors, great-uncle, cousin, his buddy Connor at Duke and baby friend Aron, Jr — and so many loved ones. Together, our angels guide us from above. With Michael Jackson, of course.

Someone recently asked me how Luka got his name. Honestly, it just came to us. Naturally, we were interested in a name with a Polish connection as that is my family’s heritage and Zach is an honorary Polish person. As Arsenal Football Club fans, we enjoyed Łukasz Fabinaski and Łukasz Podolski both players on the team at that time. So the name evolved to the North Carolina version — Luka. Only to find out after he was born that his name means, “light.” And guiding light he is.

Over the course of his nearly 21 months on this Earth, Luka’s light guided us as a family. We always said, “If he can do it, then so can we.” And, boy did he do a lifetime’s worth of impact in a short amount of time. Luka was an old soul born with a very rare disease that is thought to be unique to him, yet carried himself with the perseverance, beauty, and strength of a lion. And so he became #LukaTheLion. His legacy will live on – not just in his spirit through us remembering him, but also in research as his LuFi stem cells will live on forever to better inform how to treat people who may have conditions similar to him. The world is learning from Luka.

Just by looking at Luka’s adorable big brown eyes, bouncing curls, and beaming smile, as many people have said — for most of his life you would never know he had a necklace with over 48 feet of beads of courage representing just about every clinic visit, infusion, hospitalization, day in isolation, surgery, blood transfusion, PICU visit, bone marrow transplant, immobility, and so much more. Just the lab results, central lines, medications, injections, and need for a bone marrow transplant put in perspective how incredibly intense his condition was — but for Luka he made it into a positive, helping me clean his caps, clapping and saying “we did it” after an injection, sporting his beloved tube top, helping with putting the thermometer back, squeezing the manual blood pressure machine. He was brilliant. Seriously. At one point, he could basically take his own vitals and would march around the clinic looking for the computers which he adored oh so much. He knew how to use a stethoscope and where to put it on his heart because Dr. Philp taught him how every check. Luka truly was king of the clinic, rightfully so.

But Luka was more than how he met his medical challenges with a positive attitude. Luka possessed – and still does — a radiant soul. He found joy in just about anything – playing with, riding in, and watching race cars, making up sign language to nursey rhymes, climbing chairs and tables, stealing remotes, dancing with his bop bop move, celebrating goals being scored while watching the Premiere League, reading bookies and pointing to the words he heard me say, and his vast vocabulary accompanied by sign language that he created on his own. Beyond “more please” as nurses in this room may never forget, my favorites signs were associated with 5 Little Monkeys Jumping on the Bed and his “no, no” sign for the doctor, and head pat for falling off the bed. But perhaps the most beautiful sign represented the greatest gift of what a father can teach a son – to love and show love, as when Luka showed affection through hugs, he rubbed our backs or arms just like daddy does. Luka was truly remarkable at communicating which extended even to his toughest days.

It was only until the past two months that Luka was in such a battle medically that he wasn’t able to be himself completely, yet even then we all saw flashes of Luka, as miraculous as it was. In his last day, when doctors couldn’t believe how well he appeared given how grave his condition had become — Luka told us that he wanted to “go home in daddy’s car.” His love for lions extended to even those last days when he noticed one behind me painted on the wall. He said “lion,” and pointed to himself. And though most of his life was lived to the fullest, those last two months he fought the most courageous battle with an unspeakable level of maturity and dignity with grace. In his last act, he even waved “hello” when I explained Maks as an angel to him, and later after many prayers and us releasing him to Heaven – he pointed to himself and waved “bye bye.” Luka’s wisdom transcended this world and his guiding light will truly shine for eternity.

Luka’s light shined so brightly that he led the way not only in our family, but for the entire medical community. He was an enigma, a medical mystery. He had nearly 21 months on this Earth because of the immense dedication of UNC Hospitals, the nurses of 5 Children’s, the Pediatric Hematology-Oncology and Bone Marrow Transplant team, and his beloved Dr. Philip Roehrs. Truth be told, without the dedication, care, and expertise Luka received from Dr. Philip, his life would not have been so full. That fullness – and perhaps us bending the rules a bit — allowed Luka to roar and for us to have moments that we will remember forever. A brief visit to his grandparents Babcia and Dzadek in Washington, DC, two beach visits with his Gigi and Papa and the Fisher family, a quick stop in Asheville to see dear friends, a Durham Bulls game (that was before we knew the depth of his issues), skyping with his Aunt Dey Dey and Uncle Seth in France, supporting Maia in this church during preschool shows, walks in the stroller on the Duke Trail, going for a ride in the wagon with Maia watching her fly kites, spending time with daddy doing laps around the block as he held tightly to his push car’s steering wheel, going to a UNC-Duke women’s soccer game, accompanying Maia to playgrounds and the library, cheering us on as we completed the Running of the Bulls in his name, and visiting the YMCA being pushed around on the track during summer camp staff meetings. Many of you may remember Luka as “the gardner” with his crocs and hat covering him from the son as he helped pick up his big sister from the YMCA. Or, remembered by his vogmask after transplant with those beautiful eyes staring at you. His first birthday party surrounded by love, a cupcake tower, sliders, fries, and his big sister standing tall next to him.

Luka’s life was as full as it could be, and that’s truly because of the care he received at UNC. Perhaps it’s no coincidence that his delivery began as a UNC basketball game was being played steps away from the hospital, and he peacefully transitioned just as a UNC basketball game was played just steps away from the hospital. It’s true that Luka embodies the UNC fight song – I’m a Tar Heel born, I’m a Tar Heel bred –And when I die, I am Tar Heel dead. As such, Luka was loved deeply by not just his family and friends, but also by his team of health care professions at UNC who are the epitome of compassion as demonstrated by their outpouring of love for our lion throughout his life and especially in his last days. As evidenced by me saying as nurses, doctors, social workers, Chaplin, child life came to our room to pay their respects, “I never knew the Pediatric ICU could be such a peaceful place.”

But that’s just what our #LukaTheLion did — he brought us all together. His lion’s Pride became a circle of love not only for him, but for myself, Zach, Maia and our extended family. His secret Facebook group grew into the most compassionate community that I’ve ever had the honor to be a part of – and that says a lot as I’m a proud member of the Lakewood YMCA. Writing updates in that group to you all could have just been words, but because of you – it served as a lifeline that allowed for not only you, the reader, to have space to understand Luka, but for us to receive all the love and prayers you sent our way. So much so that even though we were in physical isolation, we were never – ever – alone.

Luka even brought the Fisher brothers — his father and two uncles together — one scarf at a time from concept to production to fame as the #LukaTheLion #ScarfChallenge made its way around the world. Support from Paris to Finland to Duke Children’s Hospital to Illinois basketball to religious statues to Half Marathons to Clemson, and so much more. Who else other than the Fisher brothers could combine forces to have you all, UNC’s Roy Williams, Carolina Panther’s Greg Olsen, and US Women’s Soccer Julie Foudy to all be in our lion’s Pride? So as you remember our #LukaTheLion, we ask that you bring your scarf to all the places you go that you wish Luka could experience — take a photo, share it, and roar.

Remembering is best by living in the spirit of that soul. So there’s no other way to carry on Luka’s legacy than by serving as a guiding light and roaring with pride. We hope one day to have a Luka The Lion Foundation where we honor our lion by helping other children and their families who face rare diseases and fight them with grace and limitless courage. We are beyond humbled that because of Luka’s extended lion pride, there is already over $5,000 in contributions in less than one day. As Zach said yesterday, “you better get to business!”

But beyond money, living in the spirit of that soul is something we can do at all moments. Consider this:

Monday morning, I read an article because the headline seemed promising. “What 3 words can make your life more fulfilling?” Naturally, I wanted to know. It was simple — “I am aware.” Followed by, “What am I aware of?” I keep thinking about this and find it to be a perfect way to articulate how Luka was able to be both a guiding light and roaring lion. He was present. Which leaves me with some passages and thoughts that have guided us through this transition which we can all do to remember and move through the healing process.

It is better to have loved and lost than to never have loved at all.

When you don’t know what else to do, then love.

In anything you do, try your best and give it your all – then know when to let go.

Most often than not we can’t see what people are going through, but we can always ask.

Live outside your label for there isn’t always one.

With grace.

And I quote from Autobiography from a Yogi by Yogananda, “Spiritual success comes by understanding the mystery of life; and by looking on all things cheerfully and courageously, realizing that events proceed according to a beautiful divine plan. For the disease of ignorance, the only cure is knowledge.”

I always felt like Luka was mysterious, even when he was in utero. It is only now that I think both he and I have found peace in this – especially as he is suffering no more.

So as you can see, in only 21 months, our Luka The Lion gave us a world and a heaven greater than the eye can see or the hand can touch. If you see strength in the three of us, it is only because we gained witness to the strength Luka endured his entire life. LukaTheLion is our angel — both a guiding light and roaring lion forever na zawsze.

So next time when you see darkness — be a guiding light. Next time when you see darkness — be a guiding light. Next time you feel weak — roar. Always remember to roar. You silly chickens!

BMT Day +152: Peacefully With Grace

In honor of our ‪#‎LukaTheLion‬ who came into this world and made it a better place, and who finished this time on Earth on exactly‪#‎GivingTuesday‬, Dr. Philip's birthday, and his buddy's last day -- of all days.

At 11:09 pm on December 1st, our sweet lion earned his angel wings and went to a better place in heaven. He's at peace and finally not suffering anymore. We may never know someone again with so much fight, courage, and bravery who made it look easy much of the time with his brilliant, beautiful spirit. "That's so Luki," as Maia would say. Some of his last expressed thoughts to us were about lions, how he wanted "more please" and applesauce, and to "go home in daddy's car." He's at the eternal home peacefully with grace. Someday we will meet again. For now he's playing with Maks, Conner, and many loved ones who are all guardian angels above. And when I explained to Luka that he will see his big brother, he waved. When we prayed around him, he pointed his finger to the sky. When we did energy work around his his soul was beaming. As our hearts are hurting, we are forever comforted that he's not hurting anymore and his soul is in a better place.

There are volumes to write about our experience the past 48 hours or so as our immediate family and UNC family supported us as we supported our lion and his big sister in this process. What stands out to me as I write in exhaustion is that I am forever grateful for the genuine and united compassion, dignity, and respect of the entire team of doctors, nurses, social workers, chaplains, housekeepers, child life specialists, snd so many more who showed up with dignity, hugs, coffee, laughter, tears, stories and support. We are eternally bonded over our immense love for Luka which was incredibly evident by the outpouring of staff who came to pay their respects. Our mutual love for our lion transcends this world and he truly made us better people. His life has and will teach and inform medicine, and in just 22 months he made an impact that will live on forever.

There are so many stories to tell, and we will get to sharing them. For now, we wanted to leave you all with this precious memory of Maia and Luka laying together on the big bed that they got special for us. Maia Bee was of course a sweet ball of energy wanting to read books and look at the objects. She did some sweet pats on his head just like she used to do and told him how much she loved him, as well as all of us gathered at that point - all grandparents, parents, and nurse Bren, who we love as well. At one point Maia ripped a beautiful picture that she made for Luka the day before of her, Luki, and "Kornelia - her sister in Poland" (who is actually a cousin, but darling enough). She often draws herself with Luki and then another person who she reaches for but can't quite place. It must be Maks and she hasn't fully understood it yet. Well, the picture was torn and I told her that we should tape it back so she can save it forever. She didn't like that and after a question she explained that she ripped it since she was sad that her brother wasn't feeling good. She wanted to know if he will sleep in the hospital forever. We then had the conversation that he won't sleep in the hospital forever and neither will mommy. I'll come home some day. When she asked where Luka will go, I responded that he will be an angel in heaven. She wanted to be an angel. So I explained that we are angels on earth. She wanted to be an angel with Luka and I responded that someday she will be. Then the most profound question, "Do all people become angels?" followed by an even more profound act. She then ripped a piece of the picture for each family member and shared it one by one. Luka received the piece that may have been symbolic of Maks. From literally tearing herself apart from her baby brother -- which couldn't be more accurate in reality -- to then sharing pieces of the picture with each family member who she loves -- is absolutely brilliant. Just like "her Luki baby," she handled it peacefully with grace.

We look forward to sharing more stories with you all -- the greatest Pride a lion could have who has been a circle of love for us that we are eternally grateful for. The circle of love just like the circle of life must live on.

We love you all. To have loved and lost is better than to never have loved at all.

More to come, always -- peacefully with grace.

BMT Day +148: Emerge

Our ‪#‎LukaTheLion started to emerge today. The juxtaposition of almost going to the PICU at the same time cognitive function improves is such an unlikely pairing. His belly is still quite big, but so far it’s not affecting his vitals too much and he was able to sit all day today when not napping. He even was able to move from sitting to laying before bed. Not much progress was made on decompressing the belly partially because the NG tube placed overnight is the kind mainly used for feedings, and not the tube type for decompression like he’s had before. There were some “I’m sorry’s” for the situation, and then an illogical theory proposed for why this happened. Either way you slice it, he got another (correct) NG tube placed today around 1 pm to achieve the end goal of decompression. I share this anecdote not because I’m excited about what happened, but because it was yet another way our lion showed us he’s boss. If any of us adults had to have inadvertently two tubes (or even one, really) placed down our noses to our stomach, we would A) be very upset and B) not do well with it. In our lion’s case, he handled it like a champion and I noted a “bead of courage” in his journal tally for his bravery.

Our lion’s improvements on cognitive function today felt miraculous. He had a tiredness to the look on his face (probably an extension of little to no sleep last night), yet at the same time he was the most alert he’s been since we got here almost 9 weeks ago. Not only was he vocalizing what I could make out as sounds similar to the words he used to know, but he was interacting and showing pretty high level of understanding while associating objects with each other and unique things he used to do. That’s what was perhaps the most refreshing — that he was demonstrating sophisticated recall and not just starting over with a clean slate. Some of my favorite “Luki throwbacks” that emerged: the back and forth rub he does on our backs and his animals to show “I love you,” associating Babcia with “food,” saying “play” when two nurse friends visited after they heard he was talking, identifying “lions” all around him, howling with his dogs, having extended conversations with me about what food he’d like to eat ranging from applesauce to cookies and ice cream (he’s never even had that which was fascinating), clapping after taking oral meds, pointing to daddy like they used to do in tandem from afar, saying his “no no” when we read 5 Little Monkeys Jumping on the Bed, and – my personal favorite – seeing an iPhone and trying to take a photo of himself while saying “cheese” with a little smile. I joined in. There was so much more I can’t even list it all. And what made it even more special was that it happened in the morning, afternoon, and early evening – showing that the emergence of his personality lasted at least for the duration of one day. We shall see what tomorrow holds and hopefully his belly goes down without any major complications while his personality, vocabulary, and genius continues to emerge.

Emerge, #LukaTheLion. Emerge! (Now belly go down.)

BMT Day +144: "That's So Luki"

When I think of Maia Bee and ‪#‎LukaTheLion‬, I see him doing something silly like putting a toy on his head, and she says with a head tilt and funny, scrunchy face, “That’s so Luki!”

When I tell her that I’m going to her school for a parent-teacher conference, she immediately asks, “But, who is going to be with Luki at the hospital?”

When we leave the double header UNC basketball game, she asks me when he will be able to come home and I respond with an explanation that when the doctors say that he is better and it is safe for him to be home. Her response is “Luki needs more medicine.”

When we hear a code over the hospital intercom for the adult bone marrow unit and she waits until it is finished, only to tell me, “bone marrow, that’s what Luki has.”

When we walk the halls of the hospital and she knows locations of all the elevators, bathrooms, and literally hiding spots as if she’s a tour guide.

When she plays side by side in the playroom with kids who have had cancer nearly all their life, and shares toys without batting an eye.

When she talks to anyone wearing a scrub, doctor coat, or name badge like they are a family member, proudly showing off her report card or new dance move.

When she sees Dr. Philip, lights up, and refers to him as “her friend” as he calls her his nickname for her, “tigger” since the first time they met she was a bouncy 2 year old, jumping around in the lobby of the cancer hospital.

When she finds her spot in Luki’s room while we change his central line dressing using a sterile field.

When she greets the home health delivery person at our door and gets excited to open Luki’s medicine box.

When she compliments the hospital parking garage attendant on her flowers and forms a bond that transcends payment.

When the “choo train” driver knows her on a first name basis and always lets her sit in the front.

When she calls the hospital “mommy’s home.”

When she simply says, “I want Luki to feel better.”

She makes the most out of everything. And she’s the most selfless person I know. Always caring first about “her baby Luki” and never making any of this about her when it would be reasonable for her to do so. The world couldn’t have asked for or given a stronger, braver or more resilient big sister than Maia Bee. We couldn’t be more proud of who she is and who she is becoming. Sometimes life is more than the pincher grasp, or counting past 30, or identifying all the letters. Sometimes life is about handling what life gives us with grace and courtesy.

There was something about this photo that made me think about Maia’s phrase, “That’s so Luki.” Even though he’s still not making expressions, it’s like he’s thinking about it and trying to a little bit. He did it again when I brushed his teeth and when reading some books. He had another relaxing night day with some progress — cruising along furniture, crawling, sitting, and some climbing attempts to get closer to me. There were two long naps, but that often happens when he getting closer to needing a blood transfusion which may happen overnight. His heart rate and other vitals continue to look good and he’s on the books for another spinal tap tomorrow. No water after 6 am so curious what creative things he will do to attempt to get “more please.” That’s so Luki!

BMT Day +126: Let Me Count The Ways

“We love you, ‪#‎LukaTheLion‬.”

It makes my heart sing when I hear nurses, doctors and staff throughout UNC tell our lion that they love him. It’s transformative and humbling. It makes a difference. It speaks volumes to the massive amount of care they have for him, and so many patients here on the Hem-Onc/BMT floor and clinic. And along with the massive amount of medications and seemingly endless infusions, love is just what the doctor ordered since love heals. (Had to stop myself from writing love heels. No matter how heavy it gets, I’m still full of Carolina puns.)

There’s a psychologist here at UNC, Barbara Frederickson, who focuses on positive psychology and wrote “Love 2.0” where she explains the power of “micro-moments.” Her research of people’s response to emotions de-mystifies the concept of love as solely unconditional and for close family and friends; yet love can and does exists in short, powerful connections we can have with anyone at anytime, hence micro-moments. Living in the hospital is full with these loving micro-moments. Here are just a few of many micro-moments directed at our lion here at UNC Children’s that stand out.

That time when a charge nurse, Britini, took us down personally to the surgery pre-op area even though she didn’t have to, just because she could tell we needed her to for moral support. Once we got there, she parted ways by telling you that “we all love you very much.”

That time when Dr. Philip gave you a pep talk in the Lion’s Den to remind you that everybody loves you very much and wants you to feel better.

That time Stephanie, the massage therapist/chakra specialist (not sure what you call someone so in tune with energy), said that love knows no fear and we have guardian angels watching over us.

That time your favorite housekeeper, Brian, gave you a dog stuffed animal for you to “love on.”

That time when your stem cell drip-dropping nurse Whitney told you how much she loves you and misses you and got a tiny, maybe little side smile (first in a month) from you.

That time nurse Taylor gave you your very own frog light because she knew how much you loved playing with hers.

That time when Amy, the nurse assistant from the clinic transported us from the floor for a procedure and shared her love and prayers for our family.

That time Maia Bee was in the bathroom stall having “her privacy” and all of a sudden told me about the field trip to the pumpkin patch that occurred a couple of weeks ago. She told me she loved the animals including the tiny little baby rabbit that was just like “her Luki baby” who she loves SO MUCH!

There are micro-moments like these everyday and it makes my heart so happy to share the love we all have for our lion both here in this online space with you all and throughout our hospital home. Love heals, once micro-moment at a time.

Today, our lion was very interested in the man with the drill that fixed some electrical issue in the nurse station/call system. He even waved. We also had some success with our lion sitting more independently (more confident when not with mama) and knocking blocks over after I staked them. He mainly liked sitting in the Lion’s Den and watching the people come and go through the window. We’ve put in a request to move to a room with a glass door/wall so that even though he’s in isolation, he can still be stimulated by the outside world. I dream of HEPA filtered hallways (the adults get this luxury) which apparently would cost $5M to do on 5 Children’s. To which I responded, I could raise that – give me a script!

Health-wise, he continues to have some quirks of not being able to hold food down, weight dipped a bit, and some higher heart rates and even a climbing temperature which required blood cultures for which we really hope aren’t positive. Just isn’t a good time for a blood infection, especially since he just got these new lines. He got some IV steroids which appeared to help. Some shaking called for more labs which led to more magnesium, potassium and calcium infusions since the medication just continues to deplete these electrolytes. He did end up eating the most I’ve seen in a month – a chicken nugget, sweet potatoes with salt and a whole applesauce pouch. He even said “yum!” while eating the nugget.

We’ll see what tomorrow holds, and for now we cherish all these loving micro-moments and more. We love you, our lion!

BMT Day +120: Without You, It's Just Words

I’ve had many different people ask me questions recently that get at their curiosity about my writing process. I wish I had a secret, but I don’t. I honestly just write what I see, hear, feel, and think about. The boring truth is these words are just a reflection of me and how I experience and process the world around me. My biggest worry is that I won’t do justice to our ‪#‎LukaTheLion‬ and how he processes and experiences his world, especially since right now he doesn’t really have a say in what I share. (Perhaps one day the posts will be from him.)

As such, my biggest goal is to honor our lion and our family by sharing our lives with those of you who care deeply by doing so in a way that is open and honest, yet at the same time respectful of our lion’s privacy. Early on in his life, we kept things quieter — mainly since we didn’t really know where everything was going and the timing didn’t feel right. We still don’t know where everything is going (one never does), but it certainly now feels right to share. These days leading to his bone marrow transplant, and now 120 days after have been made lighter by the love and support of everyone who participates in our life, many of whom through reading these daily updates from near and far.

Some have asked if it helps or hurts to write and rehash the day. Writing and sharing these daily reflections have by far been one of the best things that has ever come out of all this — the community that revolves around our #LukaTheLion is the most loving circle I’ve ever experienced. It’s an honor to be in it with you all and writing is something that helps me process the world around me. Sometimes when the words come out through typing, I understand things in a way that brings clairvoyance and meaning that I didn’t have before. And your caring is a back and forth relationship, so sharing our lion’s experience helps it come full circle. Without you, it’s just words.

Positives of the day include a lion reaching for his meds and signing “more please,” grabbing bacon off my plate and a pumpkin muffin from my hand, and continuing to interact visually more. Oh, and this family photo. Don’t mind that Maia had a phone call to take.

Our lion doesn’t have EBV in his blood; however, the HHV6 virus is back in the blood. It doesn’t change his current treatment plan and the viruses will be re-tested on Monday. As one of my favorite writers, Kurt Vonnegut, so eloquently wrote and as re-told often by Zach, “So it goes.”

Thank you for the greatest gift of your love for our lion. By reading, you are helping to form a circle of love.

BMT Day +112: In Transition

Something about today erases the past. I guess that is the definition of a cleanse. We were fortunate enough to have received just that today both physically and spiritually. It’s hard to find all the right words to describe it so I’ll try my best with sharing.

Yesterday, during the neurology consult where two doctors, a med student and a technologist were in our small hospital room examining our‪#‎LukaTheLion‬ and setting up his EEG. There was certainly a lot of energy and Luka just sat absolutely still. I was cornered behind a chair, person, and crib when Dr. Philip motioned for me to leave the room and come with him in the hallway. So I blindly followed and climbed over the rocking chair with a clean dismount to everyone’s surprise (thank you yoga for the balance training). When went out of the room, I spit out, “is there something bad?” The answer was a quick no. I stood in a circle with Dr. Philip, his med student shadow of the week Alonna who has the brightest future, and a short woman with the tallest stature I’ve ever seen, the Cancer Support Program’s massage therapist, Stephanie. They all looked at me, during a particularly emotional and frantic moment as I’d just had to explain our lives over the past 5+ years and go over each pregnancy and Luka’s medical past, and all the things we take for granted that he now isn’t doing. As you can imagine, when you re-live all of this over and over it makes you wide open to genuinely positive experiences and people. Like the medical questions and answers force you to live in vulnerability and also face it robotically. I was informed in the circle that they were arranging for me to have a massage at 9:30 am the next day. A child life specialist would come sit in the room with Luka. It was all arranged. The team would round early so I would know the plan for the day. I don’t know what it’s like to win the lottery or have Oprah tell you that you get a car, but that’s exactly how I felt. I uttered, “That’s not something bad. This is something good!” I think I cried, too. I think they smiled and reassured me it was all true. It was the nicest gesture that I can think anyone or group of people have coordinated to help us in this kind of unexpected way. Perhaps it was partially part of the surprise that UNC Health Care employs someone for this purpose. My heart was so grateful, yet at the same time it did sink in how big our lion’s medical situation has gotten.

So, this morning after rounds it was decided that he’d get the IV steroids to better cover his brain and three anti-virals to be aggressive since his encephalitis (inflammation of his brain cause by the virus) just needs more. Our lion continued to not interact, talk, you name it — except for a clap of hands and touching buttons on the thermometer for our absolutely wonderful night nurse (whoo hoo!). He sat placidly for the child life specialist reading a book while I headed for the massage.

Turns out that Stephanie also does energy work which was quite fascinating as it was my first formal experience. I ended up getting “cleansed” since intuitives need this (apparently that is me). During the experience, I saw a mountain we were climbing toward a light flashing, we reached it, and came down home which looked like like our physical family home but also seemed like there was a question of which home (you know, where people “come on home”), and then a butterfly.

We talked about Luka. How his name means “light.” Maia and her meaning of “illusion” which can be interpreted as of this world, a la Mary. Maks and his sacrifice. How it’s all connected. This medical mystery on top of all the mysteries and how all those other times our lion’s playfulness and personality stayed essentially in tact. Stephanie offered to come see Luka and do a cleanse and energy work, for which I responded, “can you come now?”

The whole experience made my heart happy. It was calming and positive, but mainly reaffirming. Luka continued to be in the state he’s been in, but with the crystal and her energy work over his chakras, he seemed very peaceful and open. At one point, we had a love circle around him, Stephanie, Zach and myself holding hands and he was in child’s pose lying down in the middle. While Stephanie was essentially saying a prayer of love and healing, Luka sat up by himself like a proud lion. I didn’t realize that her eyes were closed and she didn’t physically see it. There was a lot of beauty in the experience, and our lion ended up peacefully falling asleep. At one point there did feel like a lighter feeling was in the room.

The biggest take always were the positive impact that love has — which we thank you all for making this larger love circle around us, Maia and Luka. And, that our lion’s sense of self (heart) and third eye (brain) chakras are disrupted which are affecting his second chakra, the voice. All of which we certainly have medical evidence for — just ask the cardiology and neurology teams. Since Luka is in an extreme state of transition in his very young life, these are all things he feels in his heart. Just ask his transitioned blood type, among his donated bone marrow and probably much, much more.

The highlights for today beyond the cleansing are: our lion stood twice and was stronger in his body movements, he put his hand in applesauce which seemed like he may have tried to feed himself, and his vitals are looking a lot better while he sleeps. He did have another irregular heart rhythm, but it only lasted 9 beats and resolved itself. He’ll have another 24 hours of the EEG (hence the hat) but nothing major stood out from today other than what is try local with brain inflammation.

In the meantime, we continue to have a giant love circle around our lion as he transitions and gets rid of this virus, especially in those three so very important energy sources of the body: brain, voice, and heart.

And, do you see that reflection of the butterfly painted on the ceiling?

BMT Day +101 (Part 1): Luke 2:19

“Mary pondered all these things in her heart.”

I can relate. I’ve pondered what could happen to send our lion into a situation that would warrant going to the PICU. We see it around us all the time. And all this pondering is very much felt in the heart. Today, 100 days after his bone marrow transplant was that day.

Our ‪#‎LukaTheLion‬ woke up with much more rapid breathing and several other signs that clued in our wonderful nurses and doctors that his condition was changing enough that he needed a “rapid response” to call the PICU team to his room to transport him “downstairs.” He got oxygen, a little NG tube to get gas out of his stomach, antivirals, more IVIG, and a different IV steroid. It appears to be working and he’s a bit more comfortable and attentive. He’s even off of his oxygen right now. We were very happy that our lion reached for the thermometer to hold it and play a bit. It’s the little things that give immense relief. We feel it in our hearts.

There’s not a clear understanding of exactly what is going on other than he may have a virus that there isn’t an exact test for on top of a second round of engraftment. His platelets and neutrophils are up, so that would make sense. We are very grateful to the nurses and doctors working on his case here and consulting afar. Doctors and nurses must feel it in their hearts, too!

For now, we continue to be reassured by signs of improvement, albeit small. We feel all these things in our heart. And ponder, hope, and pray that the combination of treatments help our lion get better.

(Photo credit to Babcia at National Shrine Grotto of Our Lady of Lourdes)

BMT Day +99 (Part 1): Lion's Embrace

This is one of my favorite pictures of ‪#‎LukaTheLion‬. He’s happy, wearing his tiny baby Arsenal onesie, and it perfectly sums but his adorable little personality – peaking out from behind me to say, “Hi!”

Today is very different from when this picture was taken over a year ago. Our brave lion had a long day with a CT of his brain (normal results thank goodness) and a lumbar puncture (LP) so that his spinal fluid can be analyzed for viruses, bacteria, etc. He’s just not quite right and it can’t be explained completely, mainly he’s lethargic and not really standing, talking, making eye contact, having a hard time breastfeeding, etc. We’re waiting for the results, but it could a few days or more. We do know he has very low sodium which is being remedied by more fluids, and could be part (or maybe all) of this. For now we wait, pray, and meditate on getting him back to his sweet, silly lion personality. Or, at least we know what’s going on with him so he can get a treatment that helps. We’re waiting for an IVIG infusion to start which may hopefully give him a boost. And a late night.

One thing remains the same — despite all of this, you can certainly tell he’s fighting through it and has shown some glimpses that are positive. A reach for a cracker – the first solid food in days, a drink of milk from a straw, a little wave to a familiar nurse. I wish there was a photo of one moment in particular, so in the absence of one here is the story. Dr. Philip has been on service this week (different doctors on the team take turns), and has been running around all week to check on Luka (and I’m sure many others), order tests, make calls to the lab, look at scans, you name it. Somehow, he achieved a creative solution to getting the LP done in a timely manner as he got two anesthesiologists to go to the clinic on the complete other end of the hospital so our lion could be sedated during the lumbar puncture while he performed it. From the moment he decided it was necessary to do the CT and LP to the moment it was over, was about 1 1/2 hours which is lightening speed in hospital time. Stars aligned and this creative solution to get it done quickly and as easily as possible actually worked. While we waited for Luka to come out of sedation, we talked about his case and other life-important-meditations only to have our lion come out of sedation to give Dr. Philip a long and deep embrace. The moment lasted for probably a few minutes and was pure joy to witness. I think it was Luka’s way of showing that he hears us and that everything in the world is going to be OK. Amen.

Now let’s pray for our lion, world peace, and that the Cubbies ‪#‎FlyTheW‬!

BMT Day +77: Case For Smiles

Today in the clinic, at around the 6th hour of being there, we were approached by the ever so delightful and self-deprecating Dr. Gold. Whenever a Doctor approaches me with a different look on their face, I always want to yelp out, “What is it?!?” In this case, it was a simple request — would it be OK if our ‪#‎LukaTheLion‬ is “presented with something from some group to celebrate something?” Turns out that something is The Millionth Pillowcase from Ryan’s Case for Smiles – formerly ConKerr Cancer to celebrate one million pillowcases that have been sewn by volunteers in honor of Ryan, a patient whose mother started the nonprofit because “in order to heal better, feel better.” I think this is our lion’s second gift from the organization, as we have an adorable pillow a volunteer gave him one of the first times he was in the hospital as a tiny baby.

The presentation of this millionth pillowcase was a little media event at our infusion chair as the Rituximab finished up. Our lion gave some squeals and was quite interested in all the people looking at him with this pillowcase. He pointed to the balloons on it, and was a bit shy with his smiles, but he entertained the group nonetheless. They did think he had cancer (happens all the time), but when I saw it was the millionth, I told them that he had a rare disease and he was like one in a billion! They asked his diagnosis, which made me stop in my tracks. “Well, that’s the thing — we’re really not sure.” I was met with, “What should we write down?” This was an interesting question because I had just finished talking with a social worker about an upcoming disability hearing and how the lack of a “box” to check for his diagnosis was the cause of getting erroneous denials by our Social Security Association. So, we settled for, “a rare primary immunodeficiency disease that is most likely unique to him.” They were amazed. And even more amazed that he’s been going to the clinic since he was 3 weeks old, had a bone marrow transplant, goes to clinic twice a week — sometimes every day — and just finished a 5 hour infusion — and seemed like a happy 18 month old. It was like jaws were on the ground. Moments like that put this all in perspective.

And a lot of smiles from the pillowcase! Thank you Ryan’s Case for Smiles — you brought us many.

BMT Day +75: What Having A Big Sister Looks Like

This! Today and everyday, our ‪#‎LukaTheLion‬ loves and learns from his sister Maia Bee. It’s amazing how he both follows her lead and finds his own way at the same time. The list of ways he has learned from her how to navigate life are endless: use a fork, climb the steps, dance to pop music, kick a soccer ball, color with a crayon, put on his shoes, all things Paw Patrol, say cheese for the camera, eat from an applesauce pouch, give hugs, reading books, clink cups for na zdrowie (cheers), play trains, love dogs, and on and on! Among many things, he has taught her his love for lions, back rubs, patience, resilience for all things medical, and compassion for others.

When I woke him up from a nap and said, “let’s go pick up Maia,” he got to business and walked out his room and tried to march down the steps to get out the door. When she was running around the Y saying, “try to catch me!” the only way she realized she needed to get in the car was to see “her Luki.” They are truly a sibling match made in heaven.

BMT Day +68: Holding Hands

Our ‪#‎LukaTheLion‬ has been incredibly fortunate (as have we) to have a doctor that has walked with him all along the way — holding his hand when needed. Since 19 days old to 18 months and counting, Dr. Philip has been there by his side or in spirit for all that entails mysterious primary immunodeficiency, bone marrow transplant, and road to (hopeful) recovery: the labs, tests, waiting, medications, developmental milestones, infections, viruses, surgeries, chemo, biopsy, x-Rays, scans, transfusions, infusions, interpretations, disability appeals, charity care applications, billing errors, insurance requests, refills, chicken head balloons, and more than we can keep track of.

They both like to wear blue and have what seems to be an uncanny ability to comfort each other when needed. And just as this photo captured this precious moment of patient and doctor, they joined hands as they walked the journey together. As Maia Bee says, giving each other a “hand hug.”

Our lion is doing pretty well, platelets holding steady although technically on the low side. He’ll get another 5+ hour infusion tomorrow in clinic to continue to fight the EBV that activated from his donor. He’s also fighting a little bit of “chimerism” which is his original cells came back a bit, so the hope is that by weaning from the steroids and other immunosuppressive medication that this will help. The balancing act – and why he holds his doctors hands so closely – is that by lifting these meds too much, you don’t want to develop a life long graft vs host. In the meantime, we’ll all keep holding hands one step at a time.

BMT Day +62 (Part 1): Never Too Young

Oddly enough, it’s when we are in the Cancer Hospital that we receive the most interesting comments. Today in the crowded elevator, a lady looked at ‪#‎LukaTheLion‬ and said rather seriously, “You’re too young to be wearing a mask.” He just kept staring.

Now, I know that anyone who is in a Cancer Hospital elevator must be there for a reason – it’s not exactly a place you stumble upon. Whether a patient, family member, or hospital staff, we’re all connected in a way. I’m sure she was just thinking out loud that this toddler must be sick in some way and how he’s seemingly handling it well. Maybe she’s trying to remind herself that even kids are touched by disease, and not just her. I try to lead with grace and courtesy when people say what they say towards our lion, especially in the Cancer Hospital elevator.

But, the reality is that there is not an age or size of human that is too small for a mask. The woman’s comment made me think of all the babies – our lion included – who have endured a lot more than wearing a mask in public. September marks Newborn Screening Awareness Month. It’s the quintessential way we know that tiny humans may have a congenital condition or disease. With just a few drops of blood, the newborn screen – in many cases – can quickly point medical providers to treatments for conditions that otherwise would be life threatening.

A lot of people, especially in the medical field, ask when our lion presented with his rare immunodeficiencies. The truth is we knew something at a very early ultrasound, but it wasn’t clearly understood at the time. So, we waited. He was born, and was considered OK, but always matched with, “as far as we know.” So, we waited. He had a newborn screen, and it came back normal. So, we waited. As two weeks passed, he slept nonstop. He didn’t gain weight despite numerous interventions. He suffered from a severe cellulitis rash that nearly needed surgery to drain. He had a simple blood test that showed he lacked a basic component to fight infection in his blood. The list of more symptoms and tests goes on and on over the first year of life. And, yet we still wait for an overall diagnosis. But, are overwhelmingly thankful that our lion’s medical team, led by Dr. Philip, looked toward treatment through a bone marrow transplant since our lion’s disease – whatever it is exactly – wasn’t compatible with life.

I explain all of this to share that there is a disease that is considered near whatever it is that our lion has, and it’s just recently getting traction in the newborn screening movement. It’s SCID (severe combined immunodeficiency disease), and sometimes (sadly) called “the bubble boy disease.” There’s an even more recent form of this disease that is fondly called, “Leaky SCID” which is like a cousin of the original SCID. We all joke with Dr. Philip that our lion has “Luki SCID.” And, that’s probably not that far off from reality. Our lion doesn’t fit into any diagnosis box or code right now, but as science and research learns more – particularly in a lab in Cincinnati Children’s – the definition for SCID will probably evolve and may be articulated to include the genetic and clinical components of our lion’s disease.

In a way, even though I knew deep down something wasn’t right from the beginning — I oddly cherish those first couple of weeks before we officially knew something wasn’t right. As if we don’t know, it isn’t happening. But, that’s not true. Whatever it is, our lion was born with it and his first year would have been much better for all of us if we knew not only the overall diagnosis, but knew it at his newborn screen. Someday, just as science has evolved tremendously in just the last 3-10 years in this area, my hope is that someday if another tiny baby is born, a newborn screen can tell us that he or she has “Luki SCID” – or whatever it will be called – and the medical team, insurance, disability office, family, and baby can all move together towards a bone marrow transplant. Since, you can indeed be even smaller and wear a mask. At least you should be thanks to a newborn screen.

Dedicated to our #LukaTheLion and all the tiny babies fighting every day. We’re in clinic all day for the 5 hour infusion for EBV and then a blood transfusion. It’s a full time job to fight. Naps needed.

BMT Day +49: This Is 4:22 AM

We got the phone call at 2:30 am, packed a bag, drove on empty streets, and were at the ER front desk by 3:00 am. By 4:22 am, this was our situation in one of the ER rooms while he got IV antibiotics and we waited for a room on the 5th floor. By 6:00 am we had landed right back in 5C19. Oddly familiar. Remember, the loud and bright room.

Our #LukaTheLion has positive blood cultures meaning there is a bacterial infection in his blood stream, at least. As is always the case, “he looks good” and “you’d never know something’s wrong.” Unless you looked at his chart and labs, of course, and looked beyond what medical school teaches you is normal. The medical team is looking at his blood work closely to see why his red blood cells are dropping and how all of this could be connected with the positive cultures and high bilirubin. And, it’s also known as — this is sometimes what can happen after a bone marrow transplant.

The good news is that our lion is a very happycustomer who has been having quite a party – laughing, playing, and really just charming everyone. He’s finally asleep after being awake for nearly 10 hours. We’re about to start the IVIG infusion again (the one that caused a reaction yesterday) and see what happens. And, waiting on all kinds of lab tests.

I will say, I’ve never had a negative reaction to someone telling me “welcome back” until today. Zach and I both remarked that we knew that this would happen at some point – nearly everyone who has a transplant gets readmitted for something at some point – so it’s almost a relief to just get it over with. We just hope and pray this is a straightforward case and it all gets resolved for our lion as smoothly as possible.

On the lighter side, Zach and I have had some laughs over flashback-y moments. “I guess I’ll go to the family room now,” he says. “Ok. Can you call in our lunch order?” I respond. That was 11:50 pm.

BMT Day +42: Dr. Maia To The Rescue

Today, Luka was standing on Maia’s little bed and took a little tumble onto the floor. It looked worse than it was, apparently. He was a little bit confused, but didn’t really cry or show any signs of being hurt. Just typical toddler stuff and even with that he’s quite a resilient guy. But the way Maia Bee ran across the room and immediately grabbed her doctor kit without a blink of an eye – you would have thought there was a real emergency and she was indeed a first responder. She urgently checked his ear with the otoscope, then his heart and lungs with the stethoscope, and finally his blood pressure with the sphygmomanometer. She uttered in a calm and upbeat voice, “it’s ok baby. I’m just going to check you. Need to look in your ears. I hear a kitty! Now I’m going to check your heart. And now your back. Looks good! Now let’s pump your arm up. All better, baby!” Luka sat completely still the entire time. He’s used to it.

After a long morning visit at the clinic filled mainly with waiting for lab results, the major take away is that our #LukaTheLion’s white blood cells doubled since Monday and are technically high. In some ways it could be a good sign that his immune system is responding to an infection, but then on the other hand you don’t really want him to have an infection right now as his immune system is technically suppressed in other areas and not yet “complete.” He seems fine other than that and his tremors. As sweet Dr. Gold said, “I’d rather him have too many white blood cells than too few.” Amen!

BMT Day +21: Some Things Don't Change

No matter if you are a family spread apart for 5+ weeks with some staying in the hospital and others visiting, some things don't change. What was there remains despite the circumstances, and in our case it is the absolute sweetness that is the brother - sister relationship between our‪#‎LukaTheLion‬ and Maia Bee. Yes, they are like any siblings who both want to drink out of the same cup once in a while or think the same toy is highly desirable at the exact same moment. But, their entire lives they have had this gentle, joyful love for each other expressed through head pats, hugs, and hair pulling - of course.

When we were preparing to be admitted to the hospital during a "Family Meeting" between us and some of the staff, they asked about how Maia is as a sibling of a frequently hospitalized brother. I responded, as I have above, only to get a jarring response from one person, "Just wait, that will change." Well, I'm happy to say that it didn't. If anything, their bond is closer and stronger even with the distance that they have had throughout this process. Today was no different.

While Zach was picking up Maia from Y camp, Luka and I were roaming free in his room "unhooked." He didn't seem interested in anything. He would stand, not move, then sit and not move. He even laid down on the couch almost in protest. He just wasn't having it, at all. I thought that perhaps with all this new freedom, his body is tiring out faster and he just needed a break. So, we did just that and he sat on my lap watching some nursery rhymes videos. He then heard that subtle squeak sound that the hospital's tricycle makes when Maia rolls up and parks it next to the painted penguins outside of Luka's room. It was that moment that Luka recognized what he thought was her and exclaimed, "Maia!" while pointing at the window. But, it wasn't her. It was another kid riding the tricycle. Luka proceeded to have a meltdown, crying, and fighting through his feelings by resting his head on me. I thought he was maybe going a bit backwards from all the progress he'd been making lately. So we sat there for awhile.

Then, in an instant, he perked up as he heard the tricycle squeak again and the loud footsteps who could only be, "Maia!" She bursted through the door rubbing her hands profusely with the hand sanitizer as Luka basically ran towards her flapping his arms in glee. All he needed was a jolt of Maia's positive energy and love, and our lion was as happy as can be. Hugs, smiles, and love ensued. And he remained that way for the next two hours as they played cars side by side in the Lion's Den which has basically become our family room. See, some things don't change.