On Friday June 17th, 2016 my family's lives would change forever. This day began like many others. After a long week at work I decided to work from home that day. The boys both slept in until 9:00 a.m., which was very unusual, but they had enjoyed a day at White Waters the day before so I figured it was a hangover from that.
On Thursday I had made plans to eat lunch with my sister on Friday and thought that Cristy and the boys might enjoy some cajun cuisine at Pappadeaux's. Evan was a little tired and not acting himself, but I assured him that he would enjoy the restaurant and thought he might perk up once he got out in public as he was so prone to do. Once there he barely ate and was acting lethargic. Sis had to get back to work promptly at 12:30 so we boxed up our left overs and hurried home so I could take part in a 1:30 conference call. Unexpectedly Evan fell asleep in the car, but again I just thought his body was catching up on some long overdue sleep.
3:00 rolled around and Evan was still sleeping. Cristy went to check and discovered he was running a fever of 103. Hurriedly she got Evan dressed and cleaned up and shot out the door for the doctor's office. Nolan and I stayed home while Evan went to see the pediatrician for the 3rd time in 3 weeks. Following some basic checks to determine Evan's state the doctor noticed him grimacing while hopping down from the exam table. The doctor knew at this point a fact that took us a couple of days to process.
The doctor drew some blood and sent it off for testing. Cristy could tell from her body language and tone of voice that something wasn't right. The lab results confirmed that Evan's blood was deficient in hemoglobin and platelets, with a spike in white blood cells. Cristy was then instructed to go directly to Children's Healthcare of Atlanta immediately and that they would be waiting her arrival.
We still didn't know what was going on. Evan's pediatrician didn't want to scare us with the "C word", especially without all the facts, but she assured us that CHoA would be well equipped to find definitive answers for us. Cristy phoned me and asked me to come meet her at the hospital. The doctor thought that "moral support" would help and we still hadn't clued in on what was going on. We were fortunate that we must have missed the rush in the ER as we only had to wait a few minutes and they were able to get us back to the exam room around 7:00 p.m.
Several nurses came through for various things, to check vitals, gather insurance information and draw blood....and then draw more blood....and then more blood. Had I thought to keep count I have no doubt that it was close to eight to ten vials of blood taken. We were still in the dark when another couple nurses came in to put an IV in his arm. As it was getting late Cristy and I discussed who would take Nolan home, I told her it was no problem and I'd stay assuming it would just be a long night.
We were told the blood tests would take about an hour, but two hours passed and still no word from a nurse or doctor about what was going on. Evan was content because there was a TV in the exam room and he was thrilled to get to watch cartoons. Around 11:00 a doctor came through to discuss his initial thoughts; he strolled in, told me that Evan has been battling something for a while, that it was likely a virus or leukemia and out he went in a blur. My jaw was literally agape.
Since we didn't have anything concrete to go on I almost felt guilty calling Cristy to give her an update. I just as quickly told her my latest update because my phone was on the verge of dying. Staying overnight in a hospital had not been on my list of things to do. Finally around 1:00 another doctor came in carrying a folder and I can tell you that's a site you don't want to see. She came with the results from one of the numerous vials of blood they had collected.
A doctor's job can't be easy, especially when they come bearing bad news. Her name was Dr. Zimowski, which I'm certain I have not spelled correctly. She patiently and as thoroughly as she could explained the numbers, with Cristy on the Dr's speaker phone. As mentioned earlier Evan's blood had some very serious irregularities. She confirmed what most people already knew, but we didn't - Evan has some form of leukemia.
The 5 Stages of Grief (Wikipedia)
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| Evan adjusting to hospital life. |
The 5 Stages of Grief (Wikipedia)
Stage 1 - Denial
No, not my child. He's so active and vibrant, full of life. These results must be incorrect. All those years of medical school and you can't even diagnose blood correctly? As the night wore on I began to realize just how sick Evan really was. He was promptly given a chest X-ray and then moved to the in-patient unit in the hospital. I tried to keep in touch with Cristy using the room phones, but as more waiver forms and information was thrown my way I was slowly becoming overwhelmed.
The night wore on with more pokes and prods to my poor little soldier. I tried to explain to him what was going on, to the best of my knowledge, and tried to calm him and assure him it was going to be alright. It wasn't until the blood transfusion at 3:00 a.m. that I saw just how wrong I was.
Stage 2 - Anger
Stage 3 - Denial
How could this have happened? Didn't the other doctors weeks ago see what was happening? The walls around me were quickly collapsing as I watched the vitals on my son spike and normalize throughout the night. The unknown started to set in so each time a doctor or nurse came in and couldn't answer my questions it only agitated me more. Here I am watching my son die in front of me with cancer and no one can help!
The next morning Cristy arrived at the hospital at 6:30 and I can't recall a time I've ever needed her more. Together we discussed how we got here. Did we miss something? Are we horrible parents? What is going to happen to our son? We cried and comforted each other as we tried to come up with a game plan for notifying loved ones, work, etc.
My first communication was to my parents and sister via text. After hearing the news they started to get cleaned and dressed so they could see Evan in the hospital. The next text was to some of my friends, because I knew we'd need them as much as ever to help cope with the highs and lows we were about to go through. Many of them dropped what they were doing to see what support they could provide to Evan or the family. The first call was to my manager at work. It was the first time I had verbalized what was happening to anyone besides Cristy and as you can expect I broke down as the words flowed from my tongue. At that time we didn't have much data to go on so I told him I needed to be out indefinitely. I am very fortunate to have a manager who understands the importance of family so he offered up whatever support he could, both personal and professional.
My first communication was to my parents and sister via text. After hearing the news they started to get cleaned and dressed so they could see Evan in the hospital. The next text was to some of my friends, because I knew we'd need them as much as ever to help cope with the highs and lows we were about to go through. Many of them dropped what they were doing to see what support they could provide to Evan or the family. The first call was to my manager at work. It was the first time I had verbalized what was happening to anyone besides Cristy and as you can expect I broke down as the words flowed from my tongue. At that time we didn't have much data to go on so I told him I needed to be out indefinitely. I am very fortunate to have a manager who understands the importance of family so he offered up whatever support he could, both personal and professional.
Stage 4 - Bargaining
Why did this happen to my son? Why not me? If we were to infuse my blood with Evan's would that help? I must have asked myself hundreds of questions and each time I was forced to confront the truth; my child is living with cancer. What next? How do these treatments work and what are the side effects?
Around 11:00 that morning Evan received his platelet treatment. His arms, legs and back were starting to show more bruises than normal and this infusion was sorely needed.
Stage 5 - Acceptance
By 4:00 on Saturday June 18th, 2016 our doctor had returned with more information. Leukemia was confirmed, but at this time we still didn't know what strain, so treatments varied greatly. The lab work had to be sent to another hospital since it was the weekend so we were still in the dark. The doctors put my mind at ease somewhat by saying Evan's blood work was showing he responded to the transfusions well and that there really isn't a good or bad time to treat leukimia - the treatment would be the same either way. We've tried speaking with Evan about what's happening, but he seems uninterested or willing to go into much detail. It's probably for the best - we all know the road ahead won't be an easy one.
Many friends have visited with Evan and after hearing some similar cancer experiences from George, Luey and Stuart I'm finally starting to accept what we have to do and the chances for success.
On Saturday evening Cristy and I decided to switch things up so she stayed with Evan and I went home with Nolan. It was a welcome escape, if only for a few hours. During the drive home I got a call from Cristy and the doctor with more information. Evan's diagnosis is (A)cute (L)ymphocytic (L)eukemia (ALL). It's the most common childhood leukemia and is very treatable. This information alone perked up my confidence and allowed me to get some much needed rest - after a shower of course.
Here I sit on Sunday, just counting the hours until Evan's big day on Tuesday. The plan is to put him under, perform a spinal tap, bone marrow extraction, port installation and chemo treatment. We'll find out more tomorrow from the leukemia doctors, but I'm told that his treatment schedule will be three years, heavy up front and tailing off towards the end. Every 7 - 10 days, depending on how his body reacts, for six months, decreasing to once a month for the other 30 months.
I know that watching his body become poisoned by the chemo will be devastating to me, but even more so to him. I hope I can find the strength to support him in his fight and give him the encouragement he needs to battle. He's always been tough, but like any kid grows disinterested in things quickly and won't see them through. This is one fight he can't walk away from and I won't let him go it alone. I'm doing things now to help ease stress and take his mind off of things. Nothing will make me happier than seeing him return to his happy-go-lucky self.
Evan if you ever read this I want you to know something; Mommy and Daddy love you more than life itself and you will have us with you every step of the way.
Let the fight begin.
Around 11:00 that morning Evan received his platelet treatment. His arms, legs and back were starting to show more bruises than normal and this infusion was sorely needed.
Stage 5 - Acceptance
By 4:00 on Saturday June 18th, 2016 our doctor had returned with more information. Leukemia was confirmed, but at this time we still didn't know what strain, so treatments varied greatly. The lab work had to be sent to another hospital since it was the weekend so we were still in the dark. The doctors put my mind at ease somewhat by saying Evan's blood work was showing he responded to the transfusions well and that there really isn't a good or bad time to treat leukimia - the treatment would be the same either way. We've tried speaking with Evan about what's happening, but he seems uninterested or willing to go into much detail. It's probably for the best - we all know the road ahead won't be an easy one.
Many friends have visited with Evan and after hearing some similar cancer experiences from George, Luey and Stuart I'm finally starting to accept what we have to do and the chances for success.
On Saturday evening Cristy and I decided to switch things up so she stayed with Evan and I went home with Nolan. It was a welcome escape, if only for a few hours. During the drive home I got a call from Cristy and the doctor with more information. Evan's diagnosis is (A)cute (L)ymphocytic (L)eukemia (ALL). It's the most common childhood leukemia and is very treatable. This information alone perked up my confidence and allowed me to get some much needed rest - after a shower of course.
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| Passing the time with his Gameboy DS. |
Here I sit on Sunday, just counting the hours until Evan's big day on Tuesday. The plan is to put him under, perform a spinal tap, bone marrow extraction, port installation and chemo treatment. We'll find out more tomorrow from the leukemia doctors, but I'm told that his treatment schedule will be three years, heavy up front and tailing off towards the end. Every 7 - 10 days, depending on how his body reacts, for six months, decreasing to once a month for the other 30 months.
I know that watching his body become poisoned by the chemo will be devastating to me, but even more so to him. I hope I can find the strength to support him in his fight and give him the encouragement he needs to battle. He's always been tough, but like any kid grows disinterested in things quickly and won't see them through. This is one fight he can't walk away from and I won't let him go it alone. I'm doing things now to help ease stress and take his mind off of things. Nothing will make me happier than seeing him return to his happy-go-lucky self.
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| Enjoying The Zone at Scottish Rite. |
Evan if you ever read this I want you to know something; Mommy and Daddy love you more than life itself and you will have us with you every step of the way.
Let the fight begin.
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