Daniel Fleiger

Hello we are the Fleiger Family. Steve and Crystal are the parents of Daniel Fleiger. On October 28, 2014 Daniel came down with a really high fever and was sweating to the point of soaking his clothes all the way through. As parents we thought it was just the flu. We took him to the doctor and they told us it was the flu and that he would be better within a few days. So we went about our business and three days later he still wasn't any better. We laid with him in bed watching him and making sure that he was ok. About a week later he still wasn't getting any better and had high fevers at night and they seemed to go down during the day as he was moving around. So we took him back to the Urgent Care Center at Valley Hospital. Once they saw him again they seemed very confused and sent us to Mary Bridge Hospital in Tacoma, Washington.
Once Crystal arrived with him the hospital staff seemed truly worried and concerned. They thought it could be anything from cat scratch fever to the flu once again the flu was mentioned. Crystal challenged them at this point and said look this has been happening for a week and half so it is probably not the flu. After lots of tests and poking and prodding they decided to admit Daniel to the hospital for observation. The next morning we talked with three doctors and probably 15 residents about his situation. They went over everything with us from beginning to end. They decided to release him from the hospital with the diagnoses of white blood cell counts elevated but unknown why. They said it could be an infection but there was no infection found. Needless to say we were a little frustrated with that answer. So we kept fighting until we figured this sickness out.
The next morning he seemed like he was feeling a little better so we took a trip up to Snoqualmie Pass to let the dogs run and show Daniel the snow for the first time in his life. He loved it, but as he was playing in the snow he started screaming and we couldn't figure out why as we looked him over. So we headed back home to Pacific Washington where we were living at the time. Steve decided that we needed to make a trip to the dump so he started loading the Tahoe full of the things that needed to be thrown away. As he loaded the last few things into the Tahoe, Crystal ran out to the garage holding Daniel and said "Look honey look what is on his neck".
So I looked and in amazement saw the thing that I never wanted to see in my life, the start of a very long journey and lots of pain and misery for Daniel. There was a lump the size of I would say a quarter. Both of us as parents immediately put everything on hold and took him to the Urgent Care Center for our local hospital. They diagnosed it as a swollen lymph node and put him on some medication, they told us it happens all the time and that it would pass. We went back home and carefully watched this thing. After a week Crystal decided that it was not getting any better on this medication so we took him to Seattle Children’s Hospital.
His fever was spiking again at this point and the lump seemed to be growing, once we arrived at Seattle everyone seemed to be truly concerned about Daniel's situation. They took him in for an ultra sound and when they returned to the emergency room that we were in in where our whole world changed. The doctor returned with a team of people to tell us that he more than likely is going to be diagnosed with Myobacterium Avium Complex which attacks the lymph nodes in the body. This particular disease is very rare and not seen around this area very much. So we started to ask questions; they were very patient with us and answered all of our questions. At this point they told us that Daniel needed to go in for emergency surgery, but the operating room was not available sot they were going to do it in a sterile room in the emergency room. We talked about it and decided that it was no brainer to do the surgery. Luckily we did because we found out after the surgery the lump that was growing was 1 Centimeter away from shutting his airway completely. He was admitted to the hospital once again for observation following the surgery. They met with us two days later and told us that they removed several lumps out of the right side of his neck.
We went home one day before Thanksgiving 2015 and decided that we were not going to do anything on thanksgiving day; but we would do a small dinner with family on that Friday. So we did that and Daniel was miserable the whole time and we ended up asking people to leave. Over the course of the next few weeks another lump appeared around the same area so we went back to the doctor and they scheduled another surgery the following day. This time they removed four more lumps. After the surgery Crystal and I were discussing how the number keeps increasing each time there is a surgery. We spent a couple more days in the hospital again. This was becoming al to routine for us. We were spending more time at the hospital and doctors appointments than at our places of employment. They scheduled more appointments with Infectious Disease and the Ear, Nose and Throat clinic. These two clinics kept an eye on him for a couple more months.
At the end of the two months after many, many appointments is seemed like we were not going anywhere at Seattle Children’s. It was becoming frustrating to the point that it seemed like they were trying to just push us out the door when we had appointments because they couldn’t agree upon what this disease/sickness was. At this point we were trying to buy a new house on property so that we could have our horses on the same property with us. As we were doing that we were talking to our lender about Daniel’s situation and she mentioned the MAYO Clinic but she wasn’t sure how to get an appointment there. Steve started looking into it to see what the process was. After many weeks of phone calls that led to dead ends he finally got ahold of a lady that changed this whole process.
Her name is Kelly and she works in the Ear, Nose and Throat Clinic at the Mayo Clinic in Rochester, Minnesota. Thanks to this woman that really saved Daniels life because she took the time to listen to our story. She put me on hold for about ten minutes which seemed like an eternity; after she came back I heard the words that we have wanted to hear. Please send me his medical records we need to look at them. I just spoke with a doctor and he really wants to see the records. I had all of his records sent to her that same day. About a month went by we figured they given up on us. This is the same day that we received our keys to the new house. As Steve was making a temporary fence so the dogs wouldn’t run away he received the second phone call that saved Daniel’s life. “Hello, Mr. Fleiger”, yes this is him “This is the Ear, Nose and Throat Clinic at the Mayo Clinic”. I was kind of leery at this point, she said can you be here on Monday with Daniel. I said to her this is kind of short notice but we will be there. I am not sure how we are going to make it out there, but we will be there. The appointment was scheduled for Monday at 10 AM and It was Friday. So, I called Crystal and told her the news she was very excited and then asked how we were going to do it financially. I told her not to worry about and that they would be there on Monday. They flew out the very next day; the next 37 days were the most stressful days we have encountered yet.
Crystal and Daniel spent pretty much every day going to doctor’s appointments since the day they arrived in Rochester. The Ronald McDonald house was a life saver for us once we were able to get into the house. We made lots of friends there but one is going to last a lifetime. Daniel met a friend that inspired him the whole time while we were there. No matter what Owen was by his side unless Owen had an appointment to go to. Staying in that house made life so much easier because every child was going through something similar. I would recommend that house to anyone that is struggling with an illness and has to travel outside of their local area.
While in Rochester Crystal spent the first 23 days out there by herself with Daniel, While Steve stayed behind and moved the house into the new house and worked while they were gone. On the 24th day Steve arrived to help with the final appointments and the eight hour surgery that was to come in a couple of days. The day of the surgery was very brutal on Daniel; while were meeting with the surgeon before the surgery he got an emergency call to the Operating Room and we spent the next five hours trying to entertain Daniel while everyone in the surgery department tended to this emergency. Finally they took him into surgery around 1 O’clock in the afternoon so they weren’t done with him until around 7 PM. Once he was done the surgeon met with us and told us that he removed 14 lumps the size of a half dollar and another 11 that were the size of a quarter. The most critical ones were attached to corroded artery and the voice box. He made it through the surgery just fine and we noticed a change immediately. A couple of days later we noticed a mucus type discharge coming from the incision site so we took him back to the ER at Mayo. The admitted him right away for precautions and observations. It turned out to be nothing.
We returned home about a week later excited for the future praying and hoping that we were past all these lumps forming in his neck. We were so exhausted when we returned that all of us slept for a very long time. Five months went by with very little sign of these lumps. We had three appointments in that time frame al showing that there were lumps still but none had protruded out. The doctor at our last appointment said the lump had gone down and that he was going to leave it up to us in order to return. All of us were very excited about that news. That didn’t last too long, a couple of days ago Daniel said “Dada owie” and points to his neck, I asked him if he was in pain he said “yes”. I was very discouraged to the point of tears but didn’t want to show him that I was upset. The tears came later when he wasn’t around. We called the Doctor immediately and made an appointment. Tomorrow we have an appointment (08-17-2016) to see if he needs surgery again. If so we are headed back to Minnesota for another surgery.
The Fleiger Family is joining Caring Bridge in hopes to network with people that have children with illnesses. The thing that we have been lacking through this journey is a support network of people that actually understand what we are going through as a family. If you want to chat with us about Daniel’s illness or even share your story please drop us line here on Caring Bridge. This is also going help with updating people with his status when we are in Rochester instead of sending out many text messages and phone calls.