During the months of October and November in the Year 2006 my three year old son Collin became very ill. At the time, he “looked good” to everyone but me — not a broken bone…not a wound on him…but something about him didn’t set well with me. I sat for hours at night holding him — many nights he had a fever but many nights just unexplained pain which caused thrashing and crying in the middle of the night. In the morning, bleary-eyed and exhausted, I would wake up and realize he was as tired as I was. I was scared, worried, and at a loss for answers.
Seeking answers, comparable stories, I found none that made me feel better in my neighborhood and surrounding area. Neighbors told me my son was “manipulating me” by crying and finding me in the middle of the night but they just didn’t see what I saw, they weren’t living with him, they didn’t experience his pain. I also sought advice from my pediatrician. I thought I had chosen a doctor that was good for my son, his advocate. Being a mother of five children herself, I thought she might understand “mother’s intuition.” She didn’t. On numerous occasions, told me Collin looked “like a little linebacker.” That he was as “Healthy as any boy could be.” “I can’t give him antibiotics for a virus.”
On one particularly stressful day, something my mother told me came back to me. When I was growing up, she told me that I, too, was sick as a child. She went from doctor to doctor until she found someone she trusted. She said she went through at least eight pediatricians until she found one that agreed I didn’t look “well” and that if she thought there was something wrong with me, well then, there was something wrong. Knowing my mother did this for me gave me the courage to look for another pediatrician for my son. Hindsight, this should have been a “no-brainer” but this was my first child, pediatricians know what they are doing, right??
I came up with the name of another doctor a few blocks up the road and made an appointment with both (past and new) doctors on the same day to see if the outcome would be the same.
My first appointment was at 11AM. Again, they found nothing wrong with him and told me to go home and rest. The second appointment with the new doctor was at 4PM and the visit was very different. The new doctor, named Dr. Michelle Fiscus, looked in his ear and told me Collin had a retracted ear drum. However, he was in so much pain that he started holding his ear with his shoulder. She sent us to an imaging center for an emergency CT.
Collin was incredibly brave. Technicians strapped Collin to the table, and started telling him how good he was being during the procedure. I remember his little hand holding mine and telling him not to be scared while tears ran down his cheeks, his little mouth curled into a frown. My heart broke as I listened to him tell me, “I’m OK Momma” and he didn’t want a toy for being a good boy any more, he just wanted to go home.
I wasn’t leaving the Imaging Center without seeing what the scan looked like and stood in the hallway waiting to catch the doctor as they came out from behind the “Oz” curtain. He took pity on me and pointed to the computer monitor. It, in fact, showed there was absolutely no air moving in his ear all the way down. Collin was deaf in his right ear because of a small amount of liquid trapped between his ear and throat. Confirmation. The ENT would definitely be interested in seeing us. My son cried on my shoulder and held on to me for dear life.
We made an appointment to see an ENT. I was expecting to hear that Collin needed a tube inserted in his ear but the doctor gave him the official diagnosis of Otitus Media, Collin would also have to have his adenoids removed at the same time. His surgery was scheduled for two weeks out as the ENT wouldn’t do surgery on a boy with an inflammed ear — it had to be drained. Prednisone did the trick — within two days, Collin could hear! The surgery was scheduled for the early part of December 2006. As Collin was wheeled away for the surgery, Chris and I huddled close in the waiting room, patiently waiting for the surgeon to come in an tell us the surgery went well. He came, the surgery effortless, he expected recovery would be the same.
This is where the car left the road…
Collin did wonderfully for two days post surgery and then he took a dive. He was springing fevers round the clock and looked gray in appearance all the time. He had mouth blisters all over his tongue and insides of his cheeks. The nodules on the back of his neck were as large as an egg.
Collin also starting to complain of leg pain. Leg pain??? What does a leg have to do with Otitus Media and the removal of adenoids?? I was stumped. Day after day he wasn’t getting any better and the leg pain seemed overwhelming. I remember walking downstairs with him and looking down to see his toes curled under in a way I had never seen toes curl before…they were actually curling under due to pain. He was, of course, crying and the realization that these were symptoms of something bigger dawned on me, something way more serious.
I picked up the phone and called the pediatrician, she told me to bring Collin in the next day. Collin, used to walking around with fevers and generally looking a different shade of gray, walked in and played on the exam table. She didn’t agree Collin looked bad but did seem to understand when I told her that he wasn’t “acting like he’s supposed to…” She performed a CBC with differential in the office and told me she would call back later that night.
When the phone rang that night, it wasn’t the voice of good news. It was the voice of one worried mother to another. She told me the CBC had come back abnormal, the worst ANC she had seen in the history of her 13 years of medical practice.
She explained to me what an ANC was and that he showing a low level of neutrophils.
I heard but didn’t understand.
What the heck is a neutrophil?
ANC? What?
Dr. Fiscus told me to come in the next day for another blood draw. We did. Again, the CBC came back with a lower level of neutrophils. Again, the phone rang that night, “This could be bad” she told me. “I’m looking at all kinds of viral suppression — I’m running a mono test, a uric acid test, and, you should know, that will tell us if he has cancer.”
“CANCER!???”
“I’m contacting Vanderbilt’s Hem/Onc Department for consultation on your case.”
What the hell is HEM/ONC??
“You may end up at Vanderbilt Hospital if his fever goes up again.”
Over the course of the next 24 hours, his fever, again, pitched to 104 and we were given orders to get to Vanderbilt “IMMEDIATELY.”
My husband and I hit the hospital by 7PM. Dr. Fiscus had already called ahead and we were treated like Elvis when we walked through the front door. You know, you always wish there could be some way to speed up the process of check-in at hospitals, but when it actually happens, it kind of freaks you out. Stuff was thrown out of his work-up room as it was not considered “sanitary” for anyone that was “Immuno-Suppressed.”
“Immuno-Suppressed”?
The doctors and nurses kept talking about the Mylo-Suppressed Unit on the 4th floor. We waited for a room to open up.
It was 10PM by the time we got checked in to the room and a band of three doctors came in to speak with me about Collin. They spoke to me as if they knew for sure he had Leukemia or worse. His situation was SERIOUS and we were in for the fight of our lives.
Collin was put on the strongest IV medication available to man with the hopes it could help with infection he was dealing with. During this time, Collin was listless and feverish. I slept in the bed with him and felt the need to hold my hand on his heart so I could tell immediately if it stopped beating. This is how serious this situation was, we almost lost him due to an infection that his little body couldn’t handle.
Each morning we woke and were given the news that his ANC had fallen to a lower level overnight and they couldn’t explain why. The doctors came and told us the list of how things were going to happen but also the list of what they thought he had.
80% it was Leukemia 15% it was be Aplastic Anemia 2% it was be some rogue virus 2% viral suppression 1% something unidentifiable at the moment.
They braced us for the bone marrow aspiration and we talked about survival rates of each possibility. Things moved in slow motion, people kept a stuff upper lip, and the whole time, all I wanted to do was cry. To know what I knew but act like a grown up was just more than I could handle. I was expecting things to start melting into the walls — the experience was surreal.
The bone marrow aspiration was intense, my husband stayed in the room with Collin during the procedure but I was crying on the floor outside, I slid down the wall and just sobbed. It wasn’t the procedure, in and of itself, it was the gravity of the procedure. Whatever was wrong with Collin, we were within 72 hours of knowing what it was now.
The test results started rolling back in and, initially, hopefully, the first signs didn’t show Leukemia. So, we waited again for the next set of results to roll in, and were told, “it’s not aplastic anemia.” They did as many virus tests as they could think of and all were coming in negative. Lead doctors at Vanderbilt were stumped. Stumped. Ok, so now we were down to the 1% of the “unidentifiable.” They started chromosome testing and let us know the situation and testing could still come back “catastrophic.”
The doctors used every minute of that 72 hour timeframe. I hated it.
The lead Oncology doctor came in and sat down to give the last part of news….
He told me and my husband to sit down and listen — not to ask questions — but to listen.
“I don’t get to give many parents good news at the end of this process, so I wanted to come in and give you all the news…”
“We believe your son has a rare blood disorder called Autoimmune Neutropenia.”
Ok, Where is the good news here? Are we missing something??
Obviously.
The doctor, still using medical terminology we didn’t understand, was assuming we understood every word he said. He was wrong. It wasn’t until he got to the last bit of news when he said, “He can be treated at home, with the injection of a subcutaneous medication but we don’t know the dose of the medicine he will get, we will need to work it out over time.” “We will start injections this afternoon and see if his white counts increase overnight. If they do, he definitely has Autoimmune Neutropenia.”
The first injection was given. By the next morning, Collin’s white counts doubled and he was back on his feet. We were instructed how to give injections to Collin and when we passed muster on this task, we were released from the hospital.
The lead doctor came back just before we checked out of the hospital, “So you understand, there is an 40% chance your son will grow out of this condition all together but that will take time.”
The last thing we said to the doctors was “so, he might be fine (with medication) after all?”
The doctor laughed and said “He has a very good chance.” He stood up and told us that in his entire career, he has only given parents good news twice. We were some of the “lucky” and we would come to see that later.
Dr. Fiscus called and officially kicked us out of the hospital right before Christmas.
Over the next few weeks, we were told to come to Vanderbilt’s HEM/ONC Clinic for Blood Testing so they could adjust the level of medicine. At this point, we were deep into the Christmas holidays and were having trouble with follow up test results, things weren’t moving fast enough for me or for Dr. Fiscus. My pediatrician was kind and understood. She took things in her own hands and we worked together to get the medication leveled out. Finally, around the middle of February, he leveled out. Over the next few months, I wondered if giving Collin a daily, smaller shot of medicine would be a better idea and asked my doctor about it. She told me she didn’t know but would research things.
I kept researching and reading articles, my pediatrician was doing the same…she found the name of Dr. Dale in Seattle, and the Severe Chronic Neutropenia International Registry. She helped sign Collin up for the SCN Registry.
Within a month of making contact with the SCNIR, I received my first National Neutropenia Network Newsletter and realized the family conference wasn’t too far away. I also read the leading researchers would be at the conference and would be able to give advice for patients with Neutropenia.
There was only one person I wanted to go to that conference with…my pediatrician. I asked her to go and, surprisingly, she kindly accepted.
In July, we packed up and went to Ann Arbor, Michigan where we met everyone for the first time. The leading researchers were in the room, so close I could hug them (which I did on numerous occasions).
We heard presentations. We asked questions. We took pictures. We made contacts.
To be completely honest, I was dealing with a severe lack of confidence in the whole matter of taking care of Collin. Depression was definitely hitting me and I went to look up the symptoms of “post-traumatic stress syndrome” and had every symptom. I learned how to do the shots at the hospital but when it came time to do the shots at home, the idea of having to do the shots just about killed me.
I didn’t want to hurt him any more and felt responsible for being the one who put him through this whole ordeal. I should have changed doctors earlier, I should have asked more questions about the blood tests before they got serious but didn’t — how would I have known?? I didn’t understand it at the time but I felt a huge loss. Loss of what? I’m not quite sure. Couldn’t put my finger on what it was that was bugging me. I couldn’t stop holding him, I couldn’t stop worrying about him, I couldn’t stop thinking about him. I couldn’t sleep. I couldn’t do anything normal, just felt that I was standing still.
I was a misery to be around and started removing myself from my friendships and everyone that loved and supported me.
It took me six months to start moving again, and I believe the only thing that really saved me was the kind support from my husband (who was able to administer Collin’s shots) and the support I received from my pediatrician, who had, thankfully, become a wonderful friend. With their help, I started realizing I didn’t lose ANYTHING. I gained a healthy kid (with the help of medicine) but I needed to be thankful for what I HAD, TODAY. I am lucky. Collin is lucky.
I pulled myself up and started moving forward. Finally, progress!
I feel like I now understand how to take care of Collin. I faced my fear of giving Collin shots and forced myself to give them to him until I could do it without dreading the process or using him as a dart board.
I still have questions occasionally but feel like I have a true advocate — Dr. Fiscus. I also have the strength of my husband Chris to lean on when I need to but feel as though we have returned to somewhat a “normal” life, just different.
I started laughing again. My sense of humor has returned. I stopped yelling, purposely. I started praying again and realistically baselining life’s expectations.
I still have doubts sometimes about how to care for Collin but have more confidence in making things up as I go along.
Collin? He takes his shots every day like a champ. My pediatrician and I made the decision to do a smaller daily dose of the GCS-F. He doesn’t think too much about going in to see Dr. Fiscus for CBC’s, they are as normal now as they can be. He loves preschool. He has a best friend. He loves to dig in the dirt. He likes to use words that make my eyes roll. He doesn’t come find me any more at night.
I still find myself wandering into his room to check his cheeks and forehead but feel like that might be something I will deal with when the time is right.
Collin is getting ready for Kindergarten.
He’s making progress, but he never stopped.
