Evan’s Leukemia Story:
President’s day weekend we went snowboarding at Boyne Mountain. Evan had ski lessons
both Saturday and Sunday. He was doing fantastic and starting making turns. He was
apprehensive but was having fun. Saturday afternoon he napped in the car. Evan was grumpier
than usual at dinner but we assumed he was tired. After dinner we went swimming in the pool and he
was jumping around like usual having a blast. We assumed Evan was tired from getting up early
after a late night and it’s hard to walk in snow gear and ski boots. I had to carry him quickly to
the lodge since we thought we were late for the lessons because he was walking slow (which he
usually did). Evan did great Sunday in lessons and napped on the car ride home to Nana’s which
we thought was normal. We were all exhausted and I napped on the ride home also.
Monday afternoon he starting running a fever but I just assumed he picked up a bug after a
busy weekend up north. It didn’t seem too high so I never bothered to take it. I didn’t call the
doctor since it was the first day of the fever. The only other symptom that he had was a cough
the week before. Each night we ran a humidifier in his room and he was able to sleep better
and sounded better breathing wise.
Tuesday Jocelyn had a well baby visit around 10am. Evan fell asleep in the car ride to the
doctor’s office and in the doctor’s office sitting up in the chair with his knees to his chest. The
doctor asked if they were seeing him that day, took a peek at him but I didn’t have an
appointment and he seemed to be running the normal virus course. Evan fell asleep again on
the way to meet daddy at the SOS office in Belleville to register the Jeep we bought a few days
before. After meeting daddy I took the kids to Wendy’s for lunch and Evan wanted to lay down
across the two chairs. I finished quickly to take him home so he could rest. Tuesday evening
Feb 21st he was still tired and said that his neck hurt and one of his forearms hurt. I asked
Evan what happened and he said that he fell down the hill in the back yard which I didn’t
believe. He was really good at telling huge stories with his very vivid imagination. I considered
taking him in but it always takes a while so we decided to wait and see how he was doing the
next day.
Wednesday Feb 22 (my birthday) J stayed home with him and he seemed to be improving.
Evan wanted to go upstairs and play trains and ate some food. After I called to check in to see
how he was and if a doctor visit was needed, J thought he was doing better. I called later
afternoon to see if we would maybe go out for my free b-day dinner or just grab take-out. I said
it really didn’t matter it was just a dinner if he wasn’t feeling well. We opted for take-out Thai
and hot dogs for the boys. Evan didn’t want to eat much and went to lay on the couch. He
started complaining again about not being able to move his neck and his neck and head hurt.
Children do not complain about headaches unless something is wrong and not moving his neck
made me think immediately that he had meningitis. I said he needs to be seen immediately, he
could die from meningitis. J wanted me to stay home with the four month old baby so he took
Evan with the intent to rule out meningitis. I spent the evening crying that I waited a day to take
Evan and he could die the night of my birthday. J texted me after the urgent care visit, they did
a rapid flu test which was negative. Since Evan wouldn’t move his neck they did refer him to ER
for a spinal tap to rule out meningitis. Once the St. Joes ER doctor saw Evan she was able to
get him to move his neck therefore ruled out meningitis without the spinal tap. They did not do a
confirmatory test to rule out flu. The ER doctor did decide to request a chest x-ray due to his
pulse oxygen level to drop to low 90’s. They discovered a spot of pneumonia on his left upper
lobe, prescribed amoxicillin and sent him home. The next two days Evan laid on the couch
uncomfortable, exhausted, and in a lot of pain. His fever continued and he wanted to be carried
from the couch to the bathroom when he needed to use the bathroom. Due to the all the
Ibuprofen, Tylenol and Amoxicillin he was taking he had diarrhea but still managed to let us
know he needed to use the bathroom.
Friday February 24th he had a follow-up doctor visit after his ER visit and he was sitting up
eating a granola bar. Evan seemed to be improving and was sent home. He still remained his
sweet innocent talkative self. That night he was coughing, having trouble breathing and not
able to drink one of his meds. We tried to mix it with gatorade but he still couldn’t drink it and
coughed it up. I did not think he was improving but he just saw the doctor so I opted to wait and
see how he was doing in the morning.
J had plans with a friend to go 4-wheeling out of town so he left that morning Feb 25, since
Evan was “improving”. Once the kids and I woke up, Evan did not want to take his meds and
was burning up. I can only imagine how his stomach was feeling with all the meds. I tried to
dilute with gatorade but he wasn’t drinking it. One look at him and I knew that he wasn’t doing
well and that I was packing the kids up and taking him somewhere. A nurse from the peds
office called around 8:30am to see how Evan was doing because things just didn’t feel right with
her. Evan’s temp was 103 and he wanted to take a bath. I ran the water to help him feel better
and Tristan played some videos on YouTube to entertain him while he was sitting in the bath.
He felt so bad that he asked me to move him from facing one direction in the tub to the other
direction. After I told the nurse that and he still wanted to be carried to the bathroom from the
couch she said he should be seen and asked me to come in at 10:30am. I grabbed drinks
for everyone but completely forgot any snacks or food. I had to wait 30 minutes before we were
even called back and Evan felt awful and was burning up. His temp was over 105 by the time
they called us back. The doctor was extremely worried and almost wanted to call an ambulance
and send us to Mott. Due to me working for Saint Joseph I had to go to St. Joes first. They gave him
a suppository Tylenol to reduce his fever since he refused to swallow any meds (who could
blame him). I said I could take him straight to ER myself and they agreed to let me take him without
an ambulance. They helped get all three kids to my Jeep and I drove straight to the hospital and
walked the three children inside St. Joes. I called a friend to bring lunch for us since I forgot food. After
he brought it, Evan wanted to eat to since he liked happy meals from McDonald’s. He tried to eat a
chicken nugget but got sick after two bites. We waited for several hours before I was actually given a
preliminary diagnosis of leukemia and that Evan needed to be transferred to C.S, Mott for
pediatric specialist and pediatric ICU. Evan and I got to ride in the ambulance and he was his
usual chipper, chatty self pointing out things in the ambulance. Who would have known he was
dying. After arriving at Mott I spent several hours there while they tried to get a new IV in and
blood culture samples (which was not fun holding my kid screaming in pain). I am forever
grateful for the doctor and nurse from our pediatric office that came to Mott to help with my other
children so I was able to concentrate on comforting Evan. My husband had to drive five hours
to get back from up north not really understanding what I told him. The Mott ER had put Evan
on NPO and he wasn’t even allowed to drink water and that was all he wanted was a sip of
water and a piece of cake. I tried to get everyone that was there to find a piece of cake for him.
The nurses made me order some food and slip out of the room to eat it just to sustain my
energy.
Sunday, Feb 26 we were given the preliminary diagnosis of AML which my heart sank and I
didn’t think Evan was going to survive. The survival rate of AML is 65% vs 90% for ALL. The
official diagnosis wasn’t until after the bone marrow biopsy to confirm the cells being produced
in his bone marrow. I stayed with Evan while J went to pick up my mom and step-dad. While I
was laying next to him in the hospital bed I told Evan he was my tough little cookie (as usual)
and he had to stay there so we could get him better. He said, “I don’t want to be tough.” My
heart sank because he was my tough guy that would always pick himself up and keep going.
Monday Feb 27th, Evan was scheduled to go under for his pic line placement, bone marrow
biopsy, spinal tap and intrathecal chemo which is a prophylactic treatment for AML patients. He
was very groggy after his procedures and in a lot of pain. We just laid in his bed with him and
tried to keep him comfortable. That evening the doctors explained his chemo treatment plain
and answered any questions we had regarding his treatment. Evan started chemo Monday
evening and everything went downhill from there. Evan ate a hot dog but got sick after eating it
because he had started chemo which made him nauseous. I had already left to head home with
Tristan and Jocelyn. The night nurse gave him chocolate ice cream after he asked for it which he ate
then fell asleep briefly. His heart rate started racing at 200 bpm with his O2 level dropping below 90%
so they discussed putting him on a ventilator all night but waited until morning. By early morning they
decided to sedate, intubate and put Evan on an oscillator before I was able to make it to the hospital.
Monday evening was the last time I saw Evan awake or talk to him. After being placed on respiratory
support to allow his lungs to rest and heal he needed to be placed on dialysis to help remove all the excess
fluid his tissues were accumulating. Evan had fifteen different drugs along with saline being pumped into
him and he was very swollen. His pneumonia had moved from one upper lobe to lower lobe then to the
other lung and eventually both collapsed. During the middle of the night he was almost placed on ECMO
(extracorporeal membrane oxygenation) in his room and not the OR due to his continued O2 level dropping.
Each day on the oscillator they kept trying to ween him off it but he steadily got worse. They
were able to wait to actually take him to the OR to surgically place the cannula in his neck
artery. While on ECMO we had a little relief where he was stable for a short while. The nurse
noticed late Saturday evening around 7pm that Evan’s pupils were asymmetrically dilated and he
was transferred for an emergency CT scan across the hospital. I knew immediately that the
news meant he was hemorrhaging on his brain. It took over an hour to transfer him while
connected to ECMO and dialysis. We waited on pins and needles until the nurse finally came to
get us to talk to the team on doctors consulting on him. I knew immediately from the look on his
face the news was awful and I went into numb mode. While in the consult room (which is never
a good sign) they told us that he had 20 bleeds on his brain and that our sweet Evan was gone.
I couldn’t even cry after they told me. We tried to ask what the options were and wanted to
speak to the neurologist but he was called to an emergency spinal tap across campus. The
team said that Evan would have to go at least three weeks on ECMO without anticoagulants.
This meant we would basically just be waiting for him to develop a clot because of all the plastic
tubing in the ECMO system which would happen in a matter of time. Then he would die of a
heart attack or blood clot. The neurologist came in the morning to say that if it was one of his
kids he would take them off support. He said that Evan wouldn’t be able to walk or go to school
and would not have any short term memory. The doctors were not willing to place a shunt for
one of the major bleeds because it would not help.
So instead of waiting for anything worse happen to Evan and even more suffering we decided to
pull him off life support. The PICU doctors said that was a viable decision.