Day 13.5 - Trip to the ER

     Evan's fever spiked this evening and he's been unable to walk due to a sore hip.  We spoke with the doctors and they asked us to bring him in to the ER.  Cristy is in route now.  Hoping it's nothing serious and that he can get some antibiotics and pain killers for his hip.  I'll post additional updates in this thread.

UPDATE
     It's been quite an evening.  Evan's temperature peaked around 103.6 (corrected since talking with Cristy), which for me and you could be a big deal, but for someone without an immune system at the moment is very dangerous.  Doctors have drawn blood and are checking it for any irregularities now.  He's also complained of pains in his stomach, hips and sides.  No one is sure the cause of this.  Lack of fluids causing him to retain the chemo has been tossed about as has a carry over from the spinal tap yesterday.  He's also had dangerously low blood pressure so the doctors are monitoring that as well.  More updates to come.

UPDATE #2
     We got moved to the PICU around 2:00 because his vitals (heart rate, blood pressure, oxygen levels, temperature) are all over the place.  Bacterial infection confirmed, identified as some form of e-coli.  Entry port was likely his stomach lining.  Doctors have stated he'll stay over night and continue to receive antibiotics.  Lots of new poking and prodding going on and he's staying as strong as can be.  I'll update again at some point, but this will likely be my last entry until tomorrow.  I'd anticipate more ebbs and flows until the infection is under control.

UPDATE #3
     Doctors are keeping us in the ICU at least until tomorrow.  From there they'll determine whether to send us back downstairs to the in-patient units or stay put.  Either way we're not being discharged tomorrow.  Today has been an emotional roller-coaster for Cristy and I and I can't even begin to imagine the sort of emotions Evan has been feeling.  In the pictures below you'll see a wide range of things he had to go through, both mentally and physically.  Despite it all he stayed strong and really only complained about not getting to eat (poor guy hasn't eaten since yesterday evening).
     I suppose it's somewhat early to feel comfortable but his vitals have leveled back off since around 6:00 pm today.  He's had three blood transfusions, two platelet transfusions and countless antibiotic and steroid injections today alone.  In the pictures below you'll see figures for his heart rate and blood pressure.  Keep in mind the 161 heart rate was while he was sleeping this morning upon my arrival.  Cristy said it got into the 170s at it's worst and his blood pressure was even lower earlier in the morning before I got to the hospital.  The other alarming figure is 88/45, which was his blood pressure.

     He's had numerous x-rays today and been forced to wear an oxygen mask in order to get his body the resources it needs to fight this infection.  Because it's leukemia the symptoms and battles take place anywhere that his body transports blood.  This has made it almost impossible for him to remain pain free.

He's been experiencing discomfort all over.  The techs take an x-ray of his arm.

   
     It's times like this that I want so badly to take the pain away.  I wish it was me under the lights, getting poked with needles and subjected to this and not a child of only four years old.  His composure in the face of adversity is very inspiring and provides a great example of how to behave when things aren't going my way.

Watching The Incredibles to take his mind off of the busy day.

     I leave this last photo hoping not to jinx ourselves.  No fevers since late this afternoon and much improved vitals.  While I know this isn't exactly the road to recovery, it will allow us to get one step closer to our ultimate goal of remission.

Almost back to normal.

     Over the last few days I feel I've needed a little jolt to my psyche in order to stay strong for my family.  One of the songs that perks me up, and doesn't contain foul language, that is fitting for my frame of mind tonight is Save You by Simple Plan.

Day 13 - The New Normal

     We've been home for less than a week and it's been a bit of a challenge defining our new normal.  I still find myself worrying, probably more than I should.  We've been told by doctors and nurses that we'll get used to it over time, but for now I continue to put stress on myself to keep him relaxed and take his mind off of any discomfort.  His 'roid outbursts are increasing as is his appetite.  We'll have to monitor his diet closely so as not spike his glucose levels during this one month period.
     Evan completed another round of chemo this morning.  Cristy took Evan to his clinical appointment early this morning to beat traffic while I stayed home with Nolan.  Today's doses included Vincristine and Methotrexate in addition to his daily doses of Dexamethasone.  Due to some stomach issues he continues to have they switched him from Zantac to Prilosec.  Cristy and I have tried to ease some of the punishment on his stomach by giving him food or drinks that naturally soothe, but it doesn't seem to have helped yet.  We'll see how the Prilosec does over the next few days.

Evan feeling a bit uneasy before the chemo begins.

     The doctors stated that his blood appears normal for this stage and that he'll hit his lowest platelet, hemoglobin and healthy white blood cell counts sometime next week.  As a precaution they went ahead and gave him another platelet transfusion after chemo to keep his lower limits within an acceptable level.  Because one of the chemo treatments targets the spinal fluid he had to be put back under today in order to draw fluid and administer the drug.

Sleeping off the anesthesia.

     Upon waking up the first thing he asked for, besides more sleep, was food.  I suspect that once he gets home and gets his tummy full he'll likely want to lay down for a long nap.  No further updates to report at this time.

Day 8 - We're Home!

     After a week in the hospital we're all finally back home!  While that definitely makes us happy, now the weight of the steroid treatments falls squarely on Cristy and I.  Speaking of those, Evan now has mood swings which is very out of character for him.  The doctors assured us he would return back to normal after the 28 day cycle of these drugs.  In the meantime I have a mini-Hulk to contend with.

Welcome home Evan!
(Banner compliments of Hannah and Matthew)

     Sincere and heartfelt thanks to all of our friends who have reached out, offered support, provided encouragement and been there for my family in our time of need.  I do consider myself a lucky person because of the family bonds and close friendships we have with so many people.  We arrived home to a nice banner, a home cooked meal and fresh cut grass thanks to Hannah and Matthew and a dinner delivered to the house compliments of friends from work (Alonzo, Jody and anyone else I may not be aware of).  These are just a few of the many, many kind gestures that folks have provided.

The music director seeing us off.

     For the next month we'll have chemo and lab appointments weekly.  To my surprise apparently this will make Evan's fluids "toxic" for 48 hours after his sessions.  While that's challenging enough it's even harder with a soon-to-be two year old running around the house.  We certainly have our work cut out for us!  During this time contact with his urine, fecal matter or saliva can cause us to absorb the chemo giving us the same side effects.  If you see me walking around with a Mr. Clean hairdo it's likely because I've been splashing around in the toilet.
     Looking forward to a good night of sleep and hoping that I can get my health back under control.  With any luck we can get a few uneventful weeks under our belts to help ease our nerves a bit.
     On one hand there's no place like home, but on the other we really did enjoy the hospitality of CHoA.  If you're ever looking for a worthwhile cause to donate to I can think of no better place.  I'm going to actively see what I can do to be more involved and offer up more of my time to such a noble and life changing organization.  All the kids fight like hell and even something as small as purchasing dinner or breakfast makes a big difference.  I walk away with a much different mindset of how these sort of places operate.

     My young warrior is smiling now and hope that he keeps the same positive attitude that he's had throughout this ordeal.  He's building so much character and I couldn't be prouder of him.
   

It's time to go home.

Day 7 - The Scream Machine

     Growing up I was never a fan of roller coasters.  It wasn't until high school that I worked up the courage to get on one and that was only to impress a girl.  We received good news this morning.  Assuming Evan doesn't spike a fever tonight he'll get one more chemo treatment here and then they'll  likely release us tomorrow (Friday June 24th, 2016).
     This of course begs the question: Why the mention of roller coasters?  Well, right now is the first hill of what I expect to be many.  I can almost hear the clicks on the chain of The Scream Machine (a coaster at Six Flags Over Georgia) as we continue to rise in elevation.  The key for Cristy and I will be tempering our emotions throughout this long journey so that for our family's sanity we stay as even keeled as possible, even during the tough times.
     Evan is starting to show bursts of anger due to the twice a day steroid treatments, combined with the various other chemo drugs he's taking daily.  After he's completed his 28 day Induction plan, which includes two more spinal taps, he'll be re-evaluated to confirm the drugs are working as expected in his body.  Hair loss, nausea, vomiting, mood swings are all part of the process.  It's early, but all things considered he's handling it better than I ever would.  The folks here at the hospital have helped with this transition.

Elsa giving Evan a tattoo.

     One of Evan's doctors spoke with Cristy and I today and the scientific side of me had me asking several questions.  She actually seemed to enjoy my curiosity and to her credit she answered all my questions.  It was interesting to hear her historical perspective as well regarding how treatments have changed so much for childhood cancers, even over the last five years.

     Perspective.  For the foreseeable future I can't imagine having a bad day due to someone else's behavior towards me.  Prior to Evan being diagnosed with this ailment I would occasionally come home grumpy from work after sitting in traffic.  I rarely showed it to the family, however Cristy could tell when to come talk to me or when to give me space.  Since last Friday there is no such thing as a traffic jam anymore.  Poor customer service?  Doesn't even phase me now.  There are much bigger things to concern myself with.  It's strange, but I hope that I keep this mindset for some time.

Character cannot be developed in ease and quiet.  Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.

 - Helen Keller

     Fingers crossed that we get to leave tomorrow.  I close out this blog entry with a couple more pictures from the past couple of days.  You'll see Evan smiling and enjoying his time here, but I expect to see days soon that appear to our souls to be the downhill side of a roller coaster.

The family enjoying the beautiful service dog.

Mario mustache.

   

Day 5 - The Duck

     If you've ever heard the old adage about a duck being calm on top of the water, but busy underneath that would be a good way to describe how I'm feeling right now.  It's not an intentional facade, just how I deal with stress and turmoil.  Below the surface you'd see butterflies, nerves and lots of anxiety.
     I'm excited to report that today Evan successfully completed his port installation, spinal tap, bone marrow extraction and one of two chemo treatments.  The second one is scheduled for later this evening.  While I'm nervous now I know I'll be even more so once I'm home and don't have the safety net of the doctors and nurses.  My worst fear is jeopardizing my son's health because I missed some important detail.
     The anesthesia is slowing wearing off and he's becoming more himself after a long nap today.  I'm told that the steroid treatment tonight, and steroid treatments in general, will likely have him acting out of sorts.  I guess roid rage didn't get it's name for nothing.
      Again, can't speak highly enough about CHoA.  Today prior to surgery one of the assistants, Katie, came by to help Evan relax.  She brought him an iPad with tons of games to play on and escorted him from beginning to end.  This pre-op picture was before he received any "Laugh Juice" and he was already at ease.  Cristy and I got a chance to meet with the nurses and doctors that would be taking part in the procedures and they all gave us a good feeling prior to kissing him good bye.

Everyone sharing a laugh before surgery.

      After the surgeries Evan was groggy, as expected, but in good spirits.  I was really concerned that having the port in his chest might give him pause for concern, however he seems to not mind it.  He's probably just happy he doesn't have to go through all the needle pricks in his arm anymore.
     We were told by a team of doctors prior to surgery (I still don't know their names) that if all the blood and spinal tap tests showed low amounts of leukemia that we'd be released on Friday.  That alone will lift Evan's spirits because I know he misses his bed.  It's probably tough for him to watch Cristy or I go home each night while he has to stay behind.  Fingers crossed we can get out of here and start to return to a routine.
     Star Wars: A New Hope is running for the second time since he got out of surgery and both times he's fallen asleep about 10 minutes in.  I guess I know what to play now when I need him to go to bed.  Evan has responded really well to the treatment and I've gotten a couple glimpses of his fighting spirit that will aid him in the months ahead.    
   
   

Day 4 - This Too Shall Pass

Evan banging out some tunes on his drum.

      Monday June 20th, 2016 has been very eventful.  We've had a chance to see just what a wonderful hospital we're really at.  All the treatment and care at Children's Healthcare of Atlanta targets both the physical as well as the mental state of the patients.  Our care has been second to none and I'm confident that it will pay dividends towards Evan's self-esteem as he embarks on his long journey.

      Our day started with a small breakfast of dessert pizza, which he didn't want to eat.  Around 9:00 the hospital's music therapist came through to our room and played requested songs on her guitar and although Evan was tired initially he came around and really found his groove after a couple songs.  We were very fortunate that Cristy and Nolan arrived before the musician left so they too had an opportunity to participate in a couple songs.  This visit alone perked Evan up quite a bit since he is starting to become homesick.  We had many visitors today which also helped perk up Evan's demeanor and I know he appreciates the time together.

      Camp Sunshine is in town this week at CHoA.  They're a group that provide programs for children with cancer.  They had an arts and crafts area, games, free food and a magician.  Evan and Nolan had never seen magic up close so seeing the expressions on their faces, really all the kids, choked me up a bit.  It's days like this that remind me we'll need a support system to help take Evan's mind off of the challenges ahead.

Let the magic show begin.

Nolan catching me taking pictures.

     In addition to fun activities Cristy and I got to meet with several specialists.  The Nurse Practioner, a team of various doctors and administrators, the Oncologist, the Family Therapist and the list goes on.  Whereas before I was hungry for information, today I found myself drinking from the fire hose.  We've been provided with flyers, booklets and medical documents to peruse.  It's going to take some time for us to get up to speed.
     This evening I'm at the house and Cristy is with Evan.  He's got a blood transfusion scheduled this evening, followed by a platelet transfusion in the morning just ahead of his surgery.  Nolan and I will be there first thing to see Evan off before he heads into this life altering procedure.  In the meantime I have a list of drugs a page long to memorize, figure out how to administer said drugs and prepare ourselves as thoroughly as possible for the next 30 days.

     I've tried to play music for the boys over the years to help them appreciate the arts, help with speech and just to have fun.  One song that has been a favorite of theirs for years is titled This Too Shall Pass by OK GO.  As I sat there with the musician this morning watching Evan dance and sing it struck me that this song epitomizes his battle ahead.

Give 'em hell son.

Day 1 - The Five Stages of Grief

       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.

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.

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.

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.

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.