our leukemia story

#WattsStrong from Jason Windsor on Vimeo.

On Friday, May 24th, we woke up bright and early (not by choice, of course), and took a family jog to Breugger's to buy bagels before I met with Anna to train for the new job. All seemed normal. Later on in the day, I felt a touch off... but nothing to take much note of. We had a movie night that night complete with homemade pizza and blankets spread all over the living room. So very thankful for that family night.

Saturday morning, the 25th, I still felt funky as Michael headed out to help a friend move. Watts was in a great mood, crawling all around, laughing at his sister, and eating normally. I put him down for his nap and when he woke up everything had changed.

Day before he got sick.
He woke up around 10am screaming and could not be consoled. I finally put both kids in the car and he quieted down as we drove to our friend's new house. When we got there, I strapped him in the Ergo (baby carrier) so I could keep him close to me, but he continued to seem "off" and somewhat lethargic. I remember saying to one of my friends that she better not hug us because we might be getting a stomach bug.

I brought him home and put him down for another nap. He woke up with a fever of around 102 and diarrhea. I called the pediatrician and they confirmed what I thought, that I should just keep him full of fluids and wait. I kept track of his temperature and kept pushing fluids. I wasn't too worried at this point except that Watts didn't seem quite like himself.

Sunday morning, the 26th, Michael went to church and I put Watts down for a morning nap. After two hours I woke him up to try and get fluids in him and found that his temperature was through the roof. I nursed him and noticed that his eyes weren't tracking but were darting back and forth involuntarily. He was incredibly lethargic and not even wanting to hold up his head.

Michael got home and, after calls to my dad and the pediatrician, we drove to the ER.

In our confusion and haste, we went to the Wesley Long ER (because it was closest to us) instead of the Moses Cone Pediatric ER. When we got there, they said that it didn't matter and that it wasn't worth driving to the other one. In hindsight, I wish we had left and gone to the other one.

At Wesley Long.
The nurses got a temperature of 105.6 but everything else about him checked out as normal. No tests were run. The doctor decided to give him tylenol and monitor him for an hour to see if the temperature dropped. After the temperature dropped back down to 102, he decided to send us home, despite the fact that Watts was still incredibly lethargic. He explained that lethargic behavior wasn't abnormal with high fevers, and, as long as we kept him hydrated, that we just needed to ride it out. The nurses all seemed surprised that they were releasing us and one even followed along behind us with the warning: "If he doesn't perk back up soon, you should go straight to Moses Cone ER." I told Michael as we were leaving that I didn't feel good about the doctor's decision to discharge us.

The rest of Sunday and Monday Watts remained incredibly lethargic but his temperature was down and he kept drinking fluids. Sunday night I was up all night sick, which led me to think that possibly  Watts had just caught my stomach bug and was fighting it off with a high fever.

On Monday, the 27th, 3 tiny little dots on his groin area began to grow rapidly...within hours they looked like  spider bites with purple centers (one large one and two smaller ones). After multiple calls to my dad, the pediatrician (actually, I was only able to speak to the on-call nurse), and having our PA friend check him out, we headed back to the Moses Cone ER at around 8pm on Monday night. Watts was lethargic but still drinking fluids so I thought that we would be quickly released like before.

They fairly quickly got him hooked up to fluids, got a urine sample, and drew blood. It took many, many attempts to get an IV in him due to his body being a little dehydrated. The ER doctor told us that he wasn't concerned about the lesions, that we probably just needed to get a little fluid in him to perk him back up. I remember wondering about how much two ER visits were going to cost us and how we probably looked like paranoid parents to the ER staff.

At around 12am, however, two PICU doctors came in and we were told that his blood work came back and his white blood cell count was at 0.4.  The doctor told us candidly that he was "very concerned" and was admitting us and that we should prepare ourselves to be there for a couple days. He had no idea what was going on with Watts. We were stunned.

Someone was "coding" on the floor they were moving us to, so FIVE HOURS later we left the ER and moved into a room. It was a miserable night with our son writhing in our arms and trying to keep our minds from worry. Plus, every couple of minutes I was having to run down the hall to the bathroom because I was still sick.

They settled us in a quiet room at around 5am and we slept for an hour or so. Watts finally fell asleep after writhing all night long. I laid him down in the crib and we tried to sleep some. There was no urgency, few doctors, just fluid slowly dripping into Watts' body.

At around 7am on the 28th, Michael slipped out to get us some coffee. A medical student came by to check on Watts and we both noticed that his breathing had changed and he seemed more lethargic and difficult to rouse. Panicked, I sat him up in the bed and shouted his name repeatedly to try and get him to open his eyes. He barely opened one eye lid. Something's happening, I remember thinking. This isn't good, this isn't good. The medical student ran to get a doctor.

The next thing I know, the room is filled with people, prodding, probing, murmuring. The lesions on his groin were still growing rapidly. I was asked so many questions... over and over again we told the story, racking our brains to try and remember every minute detail. We are asked if they could move him to the ICU, that they are concerned about septic shock. We say yes.

I carried his limp body through the halls, he was hot against me. I remember the words looping through my head, He makes all things new, He makes all things new. Michael trailed with our bags, the nurse with the IV fluids.

The ICU was a blur. They started multiple antibiotics, in what they called a "shotgun" approach (the antibiotics covered a huge spectrum of possible issues). They reiterated that they had no idea what was wrong with him and that they had never seen welts like his before. They hoped something they were giving him would start to help. Doctors were in and out, ideas were thrown around ranging from Rocky Mountain Spotted Fever to anthrax. No kidding.  Pictures were taken and sent to colleagues; they did xrays, ultrasounds, and blood smears. After the blood smear we were told that they were fairly confident that it wasn't cancer, which at that moment was good news and bad news. Good news that it wasn't cancer (obviously) and bad news because they didn't know what was going on with our son and he wasn't getting better.

Around 3pm on Tuesday, Dr Williams, one of the PICU doctors, came in and told us that he wanted to transfer us to another hospital as soon as possible. Watts was rapidly getting worse and they wanted him in a facility with more specific and in-depth expertise. We consider Dr Williams one of our heroes in all of this. A room was found at Brenner Childrens Hospital in Winston Salem, about 30 minutes away, and a transport team was sent to get us.

Throughout all of this we were holding Watts, his body was hot with fever and lethargic in our arms, except when he would arch his back and try to fight. He was not responding to us any longer and had stopped nursing.

As we were waiting for the transport team, I commented that his neck looked swollen. The transport team swooped in and we were soon jogging behind them through the hospital, past the waiting room filled with family, through the ER filled with patients. They loaded him in the ambulance and I rode up front. The tears came as the vehicle started, and I cried and pleaded with the Lord for the 30 minute drive. Oh God, help him! Oh Lord, I can't do this! The transport team in the back were comforting as they worked on my son and would frequently update me on how he was doing, what a champ he was, and how beautiful his blue eyes were.

When we arrived at Brenner we were immediately taken to the PICU (pediatric intensive care unit) and brought into a room with a whole wall of glass, bright lights, and a throng of gowned and masked doctors and nurses. Michael was parking the car and for a few moments I was alone with Watts (except for 15 doctors) in what felt like an episode from House (the tv series). It felt surreal. I tried to keep a grip on Watts' hand as the doctors worked and whispered repeatedly over him, "You're doing a good job, buddy. You keep fighting. Mommy loves you."

Doctors from all over the hospital were leaving meetings and descending on us. We told the story again and again about how he got sick, answered questions about our lifestyle, our home, family medical history, etc.

Watts' neck was continuing to swell and he was positioning himself in the bed with his back arched and head extended up so that he could breathe. He wasn't recognizing us and was becoming more unresponsive.

Dr Sam Ajizian, the PICU doctor, told us that they were concerned about his airway and that they wanted to intubate him. In order to do that, they would need to sedate him. At the same time, they were going to do a bone marrow aspiration (biopsy?) even though they didn't expect to find anything. Nothing was presenting like cancer. We agreed without hesitation and within minutes were saying goodbye to our son and being ushered into the waiting room.

I can't remember what I did or what I thought...we were delirious from lack of sleep and from walking in a nightmare. I remember that I didn't want to be touched or hugged by anyone, only Michael. I didn't want to answer questions about how he was doing or what was going on... I just wanted to take my baby and go home. I was trying to pump, I remember, but my milk was all gone.

They came and got us and brought us back into Watts. He was covered in wires and tubes but we only cared that he was resting and stabilized. The lesions had stopped growing.

The doctors told us that his little body just needed to rest and heal and, in the meantime, they were going to try and figure out what was going on. Did the infection cause the low white blood count or did the low white blood count make him susceptible to the infection? They literally used the analogy of the chicken and the egg.

It was late, I remember, and there was no where for two people to sleep in the ICU room. It was too late to go the Ronald McDonald House and no quiet rooms were available. Michael told me that he thought that I should go home to sleep and see Piper, and in state of delirium and in desperation to salvage my milk supply, I agreed. I rode home with my sisters and slept fitfully, waking every so often in a cold sweat. I woke in the wee hours of the morning in a state of panic, threw clothes in bags, kissed Piper, texted Michael repeatedly (he didn't pick up because he was sleeping), and tried to grab some food to eat (once again to salvage milk).

My mom drove me back to hospital. I was weeping and massaging my throat to try and get myself to swallow bites of oatmeal. I didn't to want to talk, I remember, I just needed to see my son. I flew up to Rm 623 and Watts was just as I left him, sedated and resting.

Wednesday, the 29th, was more doctors, more questions, more probing and tests. The antibiotics seemed to be working but they still didn't know which antibiotic knocked the infection out and what caused it. If they couldn't figure out what caused it, there was fear that it could happen again. We stood by Watts' bed and talked to doctor after doctor.

At around 7pm on Wednesday, Dr Sam came in and said that he was fairly confidant that the infection seemed to most closely resemble a spider bite. We started googling images of spiders and sent family members home to set-off bug bombs in the house. Soon after that, I saw Dr Castillino come in and talk with Dr Sam. I could see them outside our glass wall and I had a sinking feeling that it wasn't good news that they were discussing. They called us into a little conference room with our nurse, Kristen, and we sat there speechless as Dr Castillino spoke the words...

It is leukemia.

I remember my mind reeling, grasping to understand what her words meant... wanting to clarify if she really meant my son, my Gideon Watts. She spoke about being really surprised and not expecting this at all, that they almost hadn't even done the bone marrow testing. She talked about leukemia, I think, but I don't remember what she said. She was quiet and serious and I wept through her words. Dr Sam stepped in at some point with encouragement. He spoke about Watts being a fighter and said that the doctors and staff were going to do everything they could to make him better, that he wasn't just a number to them. Both of the doctors are two of our heroes in this story: Dr Sam for his kindness and charisma and Dr Castillino for deciding to do the biopsy.

They all left and Michael and I cried in each others arms and prayed prayers of desperation.

That night we all three slept at the Ronald McDonald house, upon the PICU staff's urging. We needed rest and we needed to be together. I woke up throughout the night, crying and covered in sweat. Michael went back to the hospital early in the morning and I attempted to spend time with Piper and do mundane things like breakfast, getting dressed, and potty time. When my mom got there, I went back to the hospital, to my sedated boy. Once I was there, I remember feeling calm. I read Psalm 77 and it gripped my soul.

On Thursday, the 30th, we met with Dr Castillino and got the news that Watts had ALL type leukemia. We also received more information about Infant ALL and realized how rare it truly is (~408 diagnoses last year). Michael asked about his prognosis which we found out is very different from childhood leukemia and very sobering to a parent's heart.

Opening his eyes for the first time after 9 days of sedation.
Edited to add: We learned at some point that his infection was from a common bacteria called staph aureus that got into his blood stream and caused him to go into septic shock. His immune system was simply too weak (from the leukemia) to fight against it. One of his doctors later said that if his infection had been left untreated, he would have likely only lived a couple more hours.

We spent several more days in the ICU where he started chemo, had two more bone biopsies, continued antibiotics, had a couple blood transfusions, had surgery to put in the central line, and continued to heal from the infection. We fell in love with the PICU staff who cared for our son and us so tirelessly.  They extubated him after ten days and took him off of his sedation medication. On Wednesday, June 4th, we were moved to the 9th floor to the Pediatric Cancer unit. Unfortunately within hours, Watts started exhibiting signs of withdrawal from the sedation and pain meds. On Friday, the 6th, we got good news that the genetic makeup of his leukemia was MLL-G, meaning slightly less intense chemo treatment and slightly better prognosis. 

We are now in a 2-year chemotherapy treatment plan and attempting to adjust to a new normal and learning to trust God wholly with our little family.

1 comment:

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