Subscribe by email!
New to the Blog? Start here!
Birthday Wishes from Mom & Dad
What a gorgeous day to celebrate the beauty of you, Sarah Kate. Happy Birthday sweet girl. You have blessed our lives so very richly with your joyful, quirky personality. What a privileged it has been to share the past 22 years of wonderful memories. I hope that you enjoy the walk down memory lane ... I know I sure did as I pulled these pictures together. Love you forever and always!!
Birthday Wishes from Krista
Happy birthday to my sweet sister, Sarah! I am so blessed to have such a wonderful sister! Every day, your beautiful personality and optimism inspire me, and I thank God for giving me you. I'm praying that 22 brings a year of answers and continued hope for a healthy future. I love you so much!
Share my blog!
I'm not so good at saying goodbye. Once you wiggle your way into my heart, I want to hold you there for keeps. But these past few weeks I've been faced with a heartbreaking question:
How could I ever say goodbye to the man who saved my life?Our story begins in June 2011, when my parents and I found ourselves in Baltimore. It had been a tough year for me, with one of the biggest blows being severe and enigmatic hematologic complications that nobody could explain. With this addition to my lengthy list of eccentricities, I had all the earmarks of an underdog. And soon enough I was beginning to think that nobody wanted to deal with an underdog. The major medical center in my area turned me away, saying I didn't have leukemia or lymphoma, so they couldn't help me. So there we were, sitting in the pediatric hematology/oncology clinic at Johns-Hopkins, on what felt like our zillionth-and-second medical trip. We were in for quite a surprise... This visit would be entirely unlike the zillion-and-one before. In walked Dr. Robert Arceci, with a sweet smile on his face and a twinkle in his eye. Soon following the "how do you do's?", Dr. Arceci apologized if he seemed a bit groggy, as he had spent the previous night on a plane from China, heading straight to work upon landing. I never would have guessed, what with the twinkle in his eye and all that. And so the appointment went on, four hours long, revealing important answers I hadn't been so sure were even out there. And, incidentally, my heart positively melted on that fine day when I met Dr. Arceci... He was just that lovable! I soon learned that Dr. Arceci was a team player, never hesitating to pick up the phone to make a few necessary calls in order to bring together a team of experts who could work together in an effort to give his patients the best care possible. He had earned the respect of doctors from all around the world and his list of contacts was vast. Dr. Arceci opened the doors I wasn't able to myself, setting me up with a specialist close to home who could keep an eye on me. But Dr. Arceci assured us that he would gladly direct my care from a distance, and if ever my needs could not be met locally, he would bring me back to Baltimore immediately. As we were heading out the door, Dr. Arceci was genuinely concerned for our safety, inquiring about our lodging and how we planned to get there. You see, by this time the sun was setting, and Dr. Arceci knew too well that you don't want to take a wrong turn in the big city after dark. The week before, he was riding his motorcycle to work, just as he did everyday. But on that particular day, poor Dr. Arceci was mugged! For such a kind and gentle man who was helping so many people to be met with such cruelty was very sad to me... I have always counted it as a real blessing that he found his way safely out of danger's path. I returned home with a diagnosis of Hemophagocytic Lymphohistiocytosis (HLH), a finding that would soon save my life; just two weeks later, I landed in a local hospital, very acutely ill. I had the doctors scratching their heads, and without the guidance of dear Dr. Arceci, you wouldn't be hearing from me today. Earlier this month, on June 8th, my heart was shattered when I learned that, while Dr. Arceci was riding his motorcycle to work, he was killed by a hit-and-run driver. Even now my mind cannot process how this could even be possible. He played such an integral role in my care, helping us find direction when we had no idea which way was up. It seemed that Dr. Arceci was never more than a few moments away. He could be across the world, day or night, and yet anytime we emailed him, within minutes we could almost always find a thoughtful response in our inbox, signed "best wishes, Bob". It was such a comfort simply knowing he was here for me... So it just doesn't seem real that he isn't here anymore.
But this is not a story about my heartbreak over a tragic accident that took the life of a remarkable person, an irreplaceable friend. It isn't about how life isn't fair, how bad things happen to good people. Such an outlook simply wouldn't fit in a story of sweet Dr. Arceci. He witnessed the unfairness of life every single day as he encountered the devastating realities of childhood cancer. Dr. Arceci never allowed that to break his spirit, though, instead smiling through the tears and channeling that pain to empower his fight against cancer all the more. And so this is a tribute and a thank you to the inspiring man who has left behind a legacy of hope. Dr. Arceci was so truly passionate about helping sick kiddos in a life-changing, life-saving way. He was respected as an international authority in pediatric oncology, especially in the diagnosis and treatment of leukemia, histiocytic disorders, and high-risk sarcomas. At different times throughout his career, he served as director of pediatric hematology/oncology at Cincinnati Children's Hospital, Johns-Hopkins, and finally Phoenix Children's Hospital. His Emmy Award-winning documentary, A Lion in the House, touchingly captured the devastations of childhood cancer. When he transferred to Phoenix in 2012, he helped found the Ronald A. Matricaria Institute of Molecular Medicine where he directed groundbreaking research in realtime genomics, working to optimize and individualize cancer treatment. His accomplishments were many, far more than I could fully list. My family and I often wondered if Dr. Arceci ever slept! Basically, he was one sensational guy. At age 65, Dr. Arceci was not slowing down in his fight against pediatric cancer; rather, that fight continued to evolve, taking on new forms as he worked to beat diseases that have taken far too much from far too many. When he relocated to Phoenix to direct the genomics project, he told us that it was sure to be quite an adventure that would be full of challenges, but full of potential as well. Dr. Arceci wasn't afraid to undertake such adventures, though, because his career was not about fame or fortune for himself... It was about saving lives. He took in those underdogs whom he realized other doctors either couldn't or wouldn't accept, making him one of the few who were brave enough to help kids with histiocytosis and very rare forms of cancer. Did you know that in the past couple of decades, there have been dismally few advancements in treatment protocols for most pediatric cancers? Dr. Arceci wanted to change that, knowing that a new approach must be taken if progress was to be made. He was continually searching for a cure... And ultimately he viewed molecular medicine as a "game changer" in optimizing diagnostics, treatment, and prognoses. Realtime genomics is particularly promising for children and young adults; it is believed that because these patients become sick at such a young age, the cause likely has a genetic factor. Dr. Arceci's goal was that with answers found by unlocking genetic code, someday doctors may be able to detect these devastating diseases earlier -- Or even to prevent them altogether. Dr. Arceci's enthusiasm was incredibly uplifting. He had such hope for the future, such hope for a cure. I know that Dr. Arceci's legacy will live on in those who saw that hope in him. His search for that cure will continue in the work of so many people he inspired. When I think of Dr. Arceci, the word "love" is the first that comes to mind. To know him is to love him, because he so clearly loved with his entire heart. And God loves love. The Lord blesses each of us with gifts -- And we can use those gifts in such a way that allows us to be a blessing to others in turn. God blessed Dr. Arceci with a brilliant mind, a humble spirit, and a big heart, overflowing with compassion and love. With these gifts that God granted him, Dr. Arceci blessed countless people. He was the closest I've ever known to a guardian angel on earth.
"Each of you has been blessed with one of God’s many wonderful gifts to be used in the service of others. So use your gift well." - 1 Peter 4:10So... How could I ever say goodbye to my hero, Dr. Arceci, the special man who blessed so many? Graciously the Lord has given us a beautiful solution to what seems like an unanswerable question: Jesus gave us the best gift of all when He sacrificed His life so that, so long as we accept the salvation He has offered, we can share eternal life with Him.
And so, Dr. Arceci, we never need to say goodbye. It's just love you, thank you, and see ya later... Next time, in heaven.
"For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life." - John 3:16
Serology testing sent off during that hospital stay later revealed that my pituitary gland is not working properly, necessitating an MRI for further information.The good news is, there is no brain tumor pressing on my pituitary gland! So what does this mean for me? We don't have a definitive answer to why my cortisol levels dropped so much, so suddenly; but our best hypothesis is that my HLH damaged my pituitary gland. I continue to require my TPN (total parenteral nutrition) infusing 24/7 in order to keep my blood sugar stable, and the endocrinologist thinks I will likely require treatment for the rest of my life. Of course this isn't exactly pleasant, but even so, I am thankful these interventions are available to save my life. The bad news is, the entire MRI procedure (or, more accurately, the anesthesia involved in the matter) was a complete disaster. The day before we had been assured that all the arrangements had been made for my magic anesthesia protocol. We were told that there was even a room in the PICU with my name on it so that all of my unique needs could be met in the night following. So when the anesthesiologist walked into my prep room and asked, "How little do we have to do to get you through this MRI?", I felt quite shaken. You see, it takes rather a lot to get me through any procedure. But this guy just wasn't going to have any of that. A quick call to my palliative care specialist later, the anesthesiologist agreed to start out with my protocol, and then see how it goes. This was more than a little worrisome for me... I mean, I wasn't going to be awake to "see how it goes". That was on him. But what was I to do? As much as I may have liked to, I simply could not demand to be assigned a new doctor right then, right there... Could I? When at last I did awake, I was not even slightly surprised to find that the anesthesiologist abandoned the protocol entirely. He reportedly told my parents that I would be out of there by 5 o'clock that evening, an assumption he made before I was even conscious. Soon enough, however, it became quite clear that he was mistaken. At this point in time, he felt it appropriate to ask my parents "how and when they would know that I was ready to go home"… After all, wasn't I inpatient for days following a simple surgery in December? You know, the hospital stay when I was begging to be released so I could go home to my Christmas tree?! Was he, perchance, insinuating that I had already outstayed my welcome at the hospital? Why yes, I do believe he was. Ugh! Anyway, I needn't bore you with all of the details. But my body was beyond angry. It is so truly unfortunate; things did not have to be that way. It could have gone much more smoothly for everyone involved, if only he would have listened. The cherry on top of the whole fiasco was served up the next morning when I was informed that the pediatric anesthesia department wanted nothing more to do with me ever again. And given my age of 23 years old, they are allowed to pass me along, no questions asked. Thankfully Dr. Chismarich, who is my palliative care specialist and one of my foremost superheroes, stepped in, trying to make things right. She has been working so diligently to firmly document every detail of my anesthesia protocol, and to establish a team including an anesthesiologist and a surgeon who would be willing to take on my special case any time I may need them. Because, as you likely have noticed, surgical procedures are always an imminent occurrence in my life. Let us hope, however, that I can avoid the need for such accommodations for at least the next month or two… There will be plenty going on, even if my body does behave itself, as my mama is having her hip replacement surgery today! She has known since she was a teenager that her hip was a problem. Her doctor had told her that she'd be a crippled adult, but we have been very blessed in that, although she has lived in a fair amount of pain for years, she hasn't been too terribly limited until these past few months. But then suddenly it was as if a flip switched and she could barely walk. Of course this had to happen when my papa was out of town, and I myself was having surgery a couple of days later. I had a walker overnighted so that we could find a way to not only get around the house, but to get around the hospital as well. But alas, the walker did not make it in time! At least, it wasn't supposed to. We have a sweetheart of a UPS driver, though. Every Friday I receive giant, heavy boxes of medical supplies, and our UPS friend, Pete, kindly carries them into the foyer for us. Funnily enough, Pete is one of Alice Eloise's best pals! As a matter fact, she didn't used to be so crazy about him… After all, he does drive that scary big truck. But once she gave him a chance, she became entirely smitten. And now Alice Eloise and Pete play fetch every time he swings by our house with a delivery! They've been known to play some truly fantastical games of fetch, too, beginning in the foyer and stretching all the way across the house into the family room. And on days when there isn't a box for us on that no-longer-scary-big truck, Alice will wag her tail by the window as Pete drives past our house, oftentimes honking his horn as if to say, "See ya next time, Alice Eloise!" It's a friendship for the ages, iconic as Charlie Brown and Snoopy. Anyway, Mom's walker was not supposed to arrive until the evening after my surgery, which would simply be too late. But Pete so kindly met my mama downtown so she could have her walker for our trip to the hospital. Aunt Lesia and Uncle Terry assembled it for us in a jiffy, and poof! We were out the door right on time with not a moment to spare! We have had to adapt quite a lot these past months, but, largely in thanks to that handy dandy walker, we have found ways to manage. But, of course, Mom is feeling very ready to have that new hip. Please pray that her surgery goes well and that she is feeling much better in no time at all! And, if you could, please add one quick request at the end of that prayer for me. Because I cannot use my arms, I am unable to do much of anything for myself; but of course I do require such a lot of care each day, and my mama has been my caregiver since Day 1. It has been quite complicated piecing together all of the arrangements necessary to be sure I will be taken care of during my mom's recovery. We had a lot of trouble finding an agency whose nurses have the right qualifications to handle my TPN and IV medications, but at last we have everything in place. It is naturally a bit unnerving for me to rely on new people for all of my needs. But I am trying to imagine this adventure as a way to make new friends! One can find a silver lining in nearly any situation, after all! Even with the help of the agency, there were still quite a handful of time slots left unfilled on the calendar. I am truly blessed to have such kind and caring family who have committed to filling in each of those empty spaces. All of my special helpers know who they are, and I thank them dearly! Believe it or not, Mama's stay in the hospital will make for the very first time we have spent a night under two separate roofs in over five years now. I must admit that, although I will most certainly miss her while she is away, I am still psyched to slumber party it up with my big sister Krista! Don't worry about me, Mama. I will be just fine! I love you! So there you have it! The latest chapter in the adventure that is my life. And what kind of wild shenanigans will I find myself wrapped up in next time? Hmm... I guess you will just have to tune in to find out! Toodles, friends!
Just not right now...Rather, today I bring you my first prayer request of 2015. Ever since my HLH flare in October, I have been experiencing extreme hypoglycemia. It has been terribly challenging to manage; even with my TPN (IV nutrition) infusing 24 hours a day, my blood sugar still tends to dip. So when I was inpatient last month, the doctors ordered some testing in an effort to determine the cause of this hypoglycemia, revealing that my cortisol levels were dangerously low. Since then we received the results of more tests that had been pending, and it has become clear that my pituitary gland is not doing its job, explaining the lack of cortisol in my body. Now look sharp, this is where you come in! Today I will be having an MRI to check out this faulty pituitary gland. And... Why exactly is this a big deal, you ask? Well, quite simply it would not be anything but a minor annoyance for most people. But due to my body's "unique" way of dealing with pain and sensory input, this procedure requires general anesthesia for me. Thankfully I am immensely blessed to have the most sensational palliative care team in the entire world; they have pulled together the arrangements for my magic anesthesia protocol, which is an incredible relief. We all know that I have a way of being unpredictable, though, so I really need your help, too! I would be ever so appreciative if you could please remember to keep me in your prayers today. We are talking all sweet sugar plum dreams, and absolutely, positively, no paralysis!!! Keep an eye out for a non-emergent blog post sometime soon! Let's see if life can slow down just enough for me to share the jolly, albeit chaotic, details of my favorite time of year! Alice Eloise and I hope that all of our dear friends had a most blessed and magical Christmas, and a happy New Year, too.
And now, I am off to count some sheep! Or perhaps I should count Doodles instead?