"Two weeks ago he was repelling down a cliff." That's what I keep telling myself as Milan and I sit in utter shock at the state of his health.
Over Labor Day weekend, we decided to take a quick road trip as a family up to our friend's orchard in Payson, Utah. We drove up Thursday night, stayed at a farm, picked some corn, went on a family hike to a small waterfall, repelled down a cliff, then headed home to Henderson, Nevada Sunday morning. We took our time coming home, visiting Cove Fort and playing at a park on a zip line. Everyone took a turn! It was beautiful! We got home late Sunday night and went straight to sleep. That was our last normal weekend.
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Monday morning on September 5th, Milan woke up totally exhausted and aching. He had been experiencing bad headaches all weekend, but we brushed it off as traveling with six kids. He had lumps on the back of his neck that I assumed were muscle knots from driving, but they were very tender to touch. Tuesday, Milan started started his new job working from 5:00 pm until 1:30 am each day. Already exhausted, he started feeling much worse, but we assumed he was just adjusting to his new schedule and maybe fighting a bad cold. By Wednesday, all of his lymph nodes were swollen, including the lumps on the back of his neck. Thursday was more of the same. He asked me to find an urgent care that was open when he got off of work, but nothing was available. At this point, he was sleeping all day and waking up to work all night. Surviving on Tylenol and caffeine. Saturday was his day off, and he had wanted to drive up to Utah for more peaches, but just couldn't handle it. He ended up going to Urgent Care where they ignored his concerns and sent him home to "wait it out." He could barely eat, his lymph nodes were swollen like baseballs, and he could only get out of bed by sheer willpower to support our growing family. By Monday, September 12th, Milan could barely function. He was up and down in bed all day. Mostly down. He told me he wanted to go to the ER, but I couldn't get him up. By 5:00, I fed the kids dinner and birthday cake. Milan stayed in bed and sang Happy Birthday to our eldest from the bedroom. At 7:00, I pulled him out of bed to read the scriptures with the family. He sat on the couch and after, I asked if he still wanted to go to the ER. He said yes, so I went to get him some clean clothes. When I came back, he was asleep again. I tried to get him up a few times, then decided to just let him sleep for a bit. He got up at 10:30 and got in the bath to try and feel better. I called my sister to come sit with the kids, and got ready to take him to the ER.
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We arrived at the ER around 11:30 pm. They took him to Triage, but wouldn't let me back. Milan texted me to go home and sleep. He would call me with any updates. The early morning of Tuesday the 13th, they drew his blood. It came back with a white blood cell count of 671,200 white blood cells per cubic milliliter. An average healthy person has about 10,000 white blood cells per cubic milliliter. It was an automatic diagnosis of leukemia.
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Since Tuesday, September 13th, we've been trying to get answers. He had a bone marrow biopsy that day and they started him on pills to try and lower his white blood cell count. Then we waited. And waited and waited and waited. While we waited, the hospital transferred him to a new hospital, then a new one after that. Still no answers. Still no diagnosis. Still no care beyond managing with pills. Meanwhile, Milan was deteriorating. Getting sicker and more uncomfortable by the day. His spleen was and still is enlarged, pressing on his stomach causing nausea and discomfort eating. On Friday we were given the information that his blood work was presenting as Chronic Myeloid Leukemia, but his bone marrow was presenting as T-Cell Acute Lymphoblastic Leukemia. The doctor had never seen the two differing presentations and he wasn't comfortable treating such a complex case. He put in a request to get Milan transferred to the University of Utah at The Huntsman Institute.
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We got a phone call that day stating that the insurance didn't want him in Salt Lake City, they wanted him in San Diego. In our hearts, we knew we were supposed to be at The Huntsman Institute. We prayed and called and called and prayed and finally he was approved for SLC. Then the wait for a room to open began. More prayers. A room became available. Now to wait for a flight. The flight never came. The nurse said for sure Saturday morning at 10:00 am. 10:00 came and went. No word. At 11:00 we were told that insurance didn't approve the flight in time, so it wouldn't be happening that weekend. We asked if we could just drive up and we were told that it would be leaving against medical advise and would allow our insurance to deny all coverage of treatment. In the meantime, Milan was still not receiving proper care, just pills to try and lower his WBC count. No other plans for treatment or tests were made. The room at Huntsman could not be held.
Monday, I packed a bag and got to the hospital at 7:30 am. Milan had gotten worse over the weekend and I decided he needed me with him more than the kids needed me at home. We continued waiting. Around noon, we figured that no one was actually going to figure out the insurance, the flight, or the new room if we didn't do it ourselves. Milan 100% believed that he would die if he stayed in Vegas one more night. We started calling. Calling the case manager at the hospital, the member services with the insurance, and I eventually even called AirMed to get him to Salt Lake City before another day passed.
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We spent the evening watching the sky praying that his flight would arrive soon. At 11:30 pm, a full week since he had first been admitted, we got in an ambulance and rode to the airport. We boarded a teeny twin engine plane and flew directly to Salt Lake City where we then took another ambulance ride to The Huntsman Institute.
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Once we arrived at Huntsman, things started moving quickly. Milan's symptoms had worsened during the week in Vegas of waiting for answers then waiting for the transfer. We got in a room at 4:00 am local time on Tuesday the 20th. From that moment on, it was non stop. He was taken for a full body CT, met his new team of doctors, had a PICC line placed, had an eye exam, had a second bone marrow biopsy, a second eye exam, was moved to the ICU, had a central line placed, and had leukapheresis done to clean out some of the white blood cells in his blood.
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Wednesday, things were a bit slower, but still busy. Milan had an MRI of his brain and an EKG. During his leukapheresis treatment, the PA rushed in and told us they found something on the MRI and he needed an emergent head CT. While they were figuring that out, the doctor came in. This is what I wrote down after she left:
Chromosonally, he has Chronic Myeloid Leukemia. Chromosones 9 and 22 split and reattached together. This is something that is usually easily managed with oral medication. However, his T-Cells are in blast phase. Blast phase CML is a different diagnosis and much more rare. Only about 30-40% of CML turns into Blast Phase. From there, 70% of people with Blast Cell CML have Meyloid Blast Phase. Milan does not have that. His is lymphatic. For Lymphoid Blast Cell CML, people are split into two groups: B- Cell and T-Cell. His is CML in T-Lymphoblastic Blast Crisis. They are still waiting on a few tests to confirm completely, but they're nearly positive that's what this is. The doctor has been researching all day and has only found 20 other similar cases. They have started more chemo, and are giving higher doses of the meds he's already been on.
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After that, they took him for the head CT, got him back on the leukapheresis, did vials and vials of blood work, and let him try to sleep.
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This morning, Thursday, September 22nd, things have changed rapidly. I woke up at 7:00 and ran to the bathroom to change and brush my teeth. When I got back, there were tons of people in the room speaking to Milan. He has a blood clot in his arm from an IV. There's a chance that can get loose and travel to his lungs causing a pulmonary embolism. His white blood cell count is not coming down, even after all of the procedures and medications. They don't know why it isn't coming down and it is very concerning. The chemo is killing something though, because he now has Tumor Lysis Syndrome. This is starting to cause damage to his kidneys. He's currently hooked up to dialysis. He is in DIC, a blood clotting disorder. From my understanding his blood is both clotting too much and not enough at the same time. The found lesions in his brain during the emergent CT yesterday. They don't know if it's from the cancer or from an infection throwing clots from his heart. He had an echocardiogram and we are waiting for those results.
When I spoke with the doctor this morning she said they hope to get him through the next few days. When I asked about a further prognosis, she repeated that he needs to get through the next few days. We're trying to get the kids up here tonight and Milan's siblings are going to try and come see him just in case.
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Update as of 11:30 pm. Milan had a blessing today from two of his mission companions. His white blood cell count has gone down a bit, and he is currently on dialysis to protect his kidneys. We hope tomorrow is a better day. We need Milan with us as our family grows. He is truly everyone's favorite person in our home and the kids miss him terribly.