Our Journey to St. Jude

A month in review....exactly 4 weeks ago yesterday Jonathan and I were dealt devastating news....our 8 week old baby had leukemia. Some of you may not know the story of how we ended up in Memphis. Let me tell you how it began...

A few days before Christmas Tash began vomitting at night. It started out just once a night, we didn’t think too much about it. I thought maybe he had a burp that we didn’t get out or maybe he was overeating. Then it turned into 2 times a night, on Christmas Day the urine in his diaper was a rust color, he wouldn’t eat, and had a temp of 100.00. Technically not a fever in newborns (100.4 is the fever mark), but all of these things combined were unsettling to us. After opening presents we left the girls with my parents and headed to a pediatric urgent care. There was nothing urgent about our visit to their office, and quite frankly we were frustrated with the staff that did not appear to know how to handle a newborn. They took a urine sample which came back clear of infection and told us it was probably uric aid build up which can be normal in newborns. They also tried numerous times to draw blood, after fishing around in my boys arms and feet they were unsuccessful (insert angry emoticon here). We left thinking this would pass and it wasn't anything serious, hoping maybe the antibiotic I was on was causing the nausea/vomiting. A few days later we had his 8 week well baby visit at our pediatrician's office. He had started to act a little more normal and his diapers did not appear as discolored. Our pediatrician (who we adore) looked him over and said he looked okay, probably had a cold, and if he wasn't feeling better in a few days to come back. She also mentioned that he didn't look sick, and she didn't want to put him through extensive testing at that time (the marks form urgent care were VERY visible). I remember pointing out to her that his color wasn't normal, he was pale, like really pale. He wasn't pale at birth, in fact his skin was vibrant and full of color. I should have known. I should have pushed harder and followed my instinct - something wasn't right. Instead I felt goofy, was I that crazy mother that thinks something is wrong when everyone is telling me he is "fine". I even made a comment to my sister-in-law that our pediatrician unknowingly made me feel silly, she sees extremely sick kids every day and Tash looked relatively well to her. Kristi brought over her girls on Friday and we sat in my living room, discussing how blessed we were with healthy children. I had no idea in 24 hours my life would be drastically changed. Fast forward to Saturday night, Tash vomited 3 times...we called our pediatrician's after hours line, I could hear the concern in the nurses voice, get him to the ER immediately. We called Lauren to watch the girls, packed our bags and headed to the emergency room. 

Saturday Evening

We arrived at Florida Hospital around midnight...whenever you walk in with a sick newborn things tend to happen fast. Within minutes we were in Triage and they trying to draw blood. We've learned that Tash is not a good stick so yet again it took numerous tries to get a blood draw. The next thing we knew the ER doctor told us we were being admitted and started throwing medical jargon at us, we had no idea at the time what was ahead of us. Thats when they began to explain the reference range (normal counts) for his blood work. A normal person would have a white blood count of 10,000-14,000, he count was 125,000. A normal person would have a hemoglobin of around 10, his was a 5. You get where this is going. I vividly remember one of the nurses bringing me a hot blanket to wrap Tash in, she looked me square in the eyes and said, "You're son is very sick." I knew at that moment, it wasn't good. I will never forget her face or the tone in her voice, she wasn't trying to alarm me but it was as if she knew the battle ahead of us and was praying for us at that exact moment.  I wish I could find her and hug her. 

They immediately moved us upstairs to inpatient, I remember them pushing his crib down a hallway, that's when I saw the sign. Hematology/Oncology. Panicked I asked our nurse WHY are we on the oncology floor. But I knew, deep down in my soul, I knew. She mumbled something about sharing floors with other departments but I knew. I knew my boy was sick.....really, really sick. The floor doctor came in and told us they were moving us up to the PICU as she did not have the nursing staff on duty to give Tash the care he needed. I am grateful she sent us upstairs, we met some amazing doctors that were very good to us. 

We moved upstairs and met Dr. Avin, he was sweet and calm. I needed calm at that moment because I was freaking out on the inside. He let us know they were running additional tests to rule out a severe infection. If it wasn't a severe infection then we were possibly looking at cancer/leukemia. I tried to convince myself this was an infection, just a bad infection, they would pump him full of antibiotics and this nightmare would be over. I was wrong. 

Early Sunday morning, Jonathan ran home to check on the girls and pick up some more clothes, we were going to be there longer than expected.  While he was away a nephrology doctor came by and started spewing words like stress on the kidneys, dialysis, renal failure...honestly its a bit of a blur...my mid was racing, what is he talking about...this is my baby. My newborn baby why are you talking about these things.....after all I was still hoping this was a nasty infection. Next came the oncologist. I knew, I knew when I saw the look on his face. This isn't good. Yet again someone was trying to comfort me, but NO ONE was saying it. NO ONE was telling me what was wrong with my baby. He had leukemia, why wouldn't they tell me that. I just needed someone to SAY IT. Otherwise I kept holding out hope this was something else, anything else. Finally, I asked Dr. Barerro, are you SURE this is what we are looking at...his eyes were sad and he nodded his head yes. I frantically called Jonathan, telling him to get here NOW, they are using words like cancer, leukemia, etc. THIS. WAS. HAPPENING. 

That evening we met a wonderful hospitalist, Bernadette (attending doctor on the PICU floor). She came to our room and told Jonathan to wake me up, he knew it wasn't good. Tash's CT scan had come back and there was an "event". I remember thinking they make it sound like a normal thing when in fact it was the complete opposite. Now they were using the term brain damage. Wait, what?!? I thought he had leukemia, now you're telling me has potentially irreversible brain damage....this IS NOT HAPPENING! But for some reason I went into mode, fine he has brain damage what do we need to do to prevent anymore from happening. My whole world went dark and I had tunnel vision. They were immediately going to start dialysis on his blood to try and remove some of the leukemia cells. We needed to prepare ourselves that this effort may not work. We were devastated. We thought we were devastated when they told us leukemia, that was the least of our worries at this point. We just sat there staring at each, not saying anything, taking turns crying, watching them bring in equipment to begin the procedure.  An hour later the doctor came back, good news, the scan was originally read by an adult radiologist, she sent it for a second read and this time a pediatric radiologist read the scan. It was NOT a brain event. The scan was "normal" for an infant and he appeared to be fine, no brain damage. We went from our lowest low to the highest high. At that moment I literally felt like I was jumping joy, its amazing how now the diagnosis of leukemia ONLY didn't seem so bad in fact it was great. We could beat leukemia. 

After the roller coaster of emotions that night, I had a melt down. How did this happen? How is this our life? Why is this happening to my sweet child? Did I do this? Was it something I did while I was pregnant? How could I have prevented this? Did I do something horrible in my past to bring this on my family? Your mind goes everywhere and anywhere in those moments in the dark. Jonathan held me, assured me it was nothing I had done and we would get through this. Tash WILL beat this. I am grateful for my husband for so many, MANY reasons but one thing I cherish about our marriage, we are strong for each other when the other needs it most. Thankfully we are never weak at the same moments. We are both competitive, focused, task oriented and driven. You give us a mission we will complete it, albeit we will not take the same route to get there but we will both get there :) So we CAN do this. We WILL do this. TOGETHER.

We asked the head of pediatric oncology at Florida Hospital how many cases of infant leukemia had they seen....he responded, "Two". Two?!?! Are you kidding me?! That can't be right....but it was, this is a rare diagnosis. That's when our wheels starting turning and we knew in our hearts we needed to be somewhere else. As we sat there that night, we started to talk about St. Jude's. As most of you know Jonathan and I met in Memphis, just steps away from St. Jude. We had volunteered here together and even dressed up for their big Halloween event. With Jonathan dressed as Spiderman, we had walked these halls trying to bring a smile to the face of young patients. I never dreamed we would be on the other side of that door one day. We asked Bernadette that night, should we stay in FL? Should we go to Memphis? She was being vague and beating around the bush a bit. I finally looked her in the eye and said, If this was your child what would you do? She replied, "St. Jude's is the best, I would go to Memphis." Jonathan and I looked at each other and we knew in that moment, we were going back to Memphis. 

The next day is a complete blur, we reached out to friends, past business associates, anyone that could connect us to the folks at St. Jude. Jonathan was relentless. We always joke he is an operator, he likes to execute, after all he puts out fires all day. Looking back I am so grateful he handled EVERYTHING and just let me be with my boy. Tash was my focus and Jonathan knew that. While Jonathan worked feverishly to get us accepted at St. Jude, our oncologist at Florida Hospital was making calls too. Oddly enough he is on the Board of Governors at St. Jude (there are only 35 doctors in the U.S. on the Board). He was in our corner and was going to do what he could to get us here as well. Back at home, the troops had arrived, Jonathan's parents and my Mom were there within hours. They jumped to take care of the girls and help explain where Mommy, Daddy and Tash were. They made sure the girls stayed in routine, dropping them at daycare and then coming to the hospital to support us. We are eternally grateful for every ounce of help we have received. Thank You just sounds silly as it doesn't begin to cover the gratitude we feel. 

Later that day, Tash and I were on a plane to Memphis, with Jonathan not far behind us. I met the critical care team that would be flying us to St. Jude. They live in Arkansas and had the southern twang I had missed so much. As soon as I met them, I knew we were going to the right place, with the right people. I felt at peace in that scary moment.They could see the worry on my face, we talked the entire flight. We talked about their kids, their dogs, their job, anything and everything except for how sick Tash was. A 2 hour flight felt like 20 minutes, I hope to one day be able to thank them in person for knowing what I needed at that moment. As we descended on to Memphis, the view was so familiar to me. I had flown in and out of Memphis more times than I can count over the course of the 7 years in which I lived here. But this time it was different. 

First Flight

First Class Seats

They took us straight from the tarmac to an ambulance which dropped us into St. Jude. We were bombarded by the most amazing people. Everyone and I truly mean EVERYONE is caring, compassionate and positive. Positive that they WILL cure our boy. Our sweet boy. Their attitude is contagious and flows throughout the air here. So that is the short version of journey to St. Jude. I'm sure some of you are thinking short version?!?!? Whaaaa?!?!?! That's okay if you ever want the long version, give me a call ;) 

We have had many firsts/highlights over the course of the past 4 weeks here are a few:

Swole.

Beanie Caps..we don't have those in Florida!

A spoonful of sugar helps the medicine go down...

Mom & Mimi forced him to watch the Bachelor ;)

For our NOLA peeps...he got the baby!

Checking out the fake fishies

Ladies Man

Craft Time - He LOVES it ;) 

We are #TASHTUFF!!