I appreciate you all doing this. All cancers suck but I hate the word leukemia more than you know. So much is happening in leukemia protocols and i hope that the future wont Have these tiny babies getting SO much chemo.

My name is Suzy Sogoyan and I am a mom of a survivor.  My son Christian was diagnosed with leukemia B-all in September 2016.

I am honored to participate as a team member for the 2020 Students of the Year program, a seven-week initiative in which select high school students from around the country participate in a fundraising competition to benefit The Leukemia & Lymphoma Society. I am proud to support my candidates Emily and Natalie; who are sisters of suvivors and am raising critical dollars in honor of a young patient hero who is currently battling or is in remission from a blood cancer. Each dollar is a vote. The candidate team that raises the most money at the end of the seven weeks is named Student of the Year. Our mission is to not only raise the most money but also to bring attention to blood cancers like leukemia, which is the most common form of cancer in children and teens.

MY STORY

If there is any point in life when you learn that there is no plan; it’s when your child’s health and life is at risk.  On September 16, 2016 we received the awful news that no parent wants to hear, “Your son has leukemia.” It is a cliché to say that one particular moment can change your life forever, but I know that this moment did exactly that. Our lives had been turned upside down.

On Wednesday, September 14^th, I was getting ready to go to the Beyoncé concert.  I had a bad feeling in my gut; something was telling me not to go.  I went home after my hair appointment and decided to take Christian to his pediatrician’s office.  For two days, he didn’t fully seem like himself; getting weak during playtime and sleeping more than usual.  I figured I’d take him to his pediatrician’s office for a quick checkup.   Christian’s ped wasn’t in the office that day so another ped walked in and immediately said, ‘he is too pale for my liking…I want bloodwork.’ After results of the bloodwork, we were told to go to Cedars Sinai for a blood transfusion.  I panicked but never imaged it would be anything worse than low blood counts.  Our day at the ER is a day I never want to remember or discuss to be honest.

After hours at the ER, we were admitted into a room and annoyed that they were taking forever to confirm his blood type before his transfusion.  Little did we know that two days later, we would be handed a giant children’s cancer handbook, and a calendar of our first month stay at the hospital.  The hours and minutes between the day at the ER (Wednesday) and the day of his diagnosis (Friday) seemed like eternity.  They told us that it may be leukemia, but what kind of leukemia? Has it spread? Will he need a transplant? Why did this happen? Did I do something wrong? Did I eat something bad during my pregnancy? The questions were endless….so were the fears.

On Wednesday I was certain that these doctors are crazy and Christian cannot have leukemia.  On Thursday it hit me that he may have leukemia, but I prayed that it was treatable, and nothing worse.  On Friday, I was ready for the news.  I knew it was leukemia.  The doctors knew too and I could see it in their eyes; they just needed the biopsy to properly diagnose him. Christian’s doctor gathered us in the room and told us that Christian has Acute Lymphoblastic Leukemia B-All.  Then, she uttered the words I had been waiting to hear for 72 hours; “He is going to be fine.” I knew that there are still chances of things going wrong, but I was done thinking that (for that moment at least).

As a mom I needed to KNOW what it is, so I can attack it…so I can move forward. I guess this is how mom’s function under a bad situation.  At this moment I knew that I would be my son’s strongest advocate.  I annoyed every single nurse on our floor and I didn’t give a damn, to be honest. I wish I took a photo of all the signs I made for our door haha.  “Don’t take out the trash if the baby is sleeping.” “No we do not want to be a part of rounds (where residents and doctors discuss outside the door).”

Also, the side effect of the chemo was that Christian would become neutropenic, which means he had zero immune system, a scary period where we had to be very careful to avoid possible infection.  This is why he wasn’t allowed visitors.  He still isn’t. So I had to be the one telling family members not to visit, or telling immediately family to use hand sanitizer, wear a mask, etc. Personally I went through a lot while trying to contain myself and I had many moments of anger towards everyone around me.  I couldn’t explain what was going on in my head because I couldn’t even understand it myself.  I’m going to be honest; I lost my faith for a bit but I quickly regained it thanks to a number of people (you know who you are). Even though it was difficult for me to see the light, I didn’t want to be a cynic, I didn’t want to lose hope and more importantly, I remembered the one experience in my life that I had felt God’s love for me; the moment he gave me Christian.

Instead of turning my back on faith, I turned towards it.  We decided to baptize Christian at the hospital; in his room.  It was an emotional and beautiful day.  Yes, beautiful.  Christian laid peacefully as the priest prayed.  Keep in mind he would cry and yell anytime a stranger was near him but this time, he didn’t.  My lips were trembling underneath my mask as I tried to hold back the tears…but I couldn’t help it.  They weren’t sad tears; I felt relief.  I knew someone bigger is coming in to help Christian.  There’s a great quote I found; “To trust God in the light is nothing, but trust him in the dark – that is faith. And there I was, putting my child in God’s hands.  I know this sounds crazy but I noticed a change in Christian instantly, and in myself.

It was hard living at the hospital but eventually, I started to treat every day like a gift.  I studied his face, I touched and smelled every single part of his body, like I did the day he was born.

While your child is going through phases, you as a parent are going through phases too.  From not knowing what the hell leukemia is to learning all the cancer language.  We spent one month dealing with chemo, spinal taps, pic lines, fevers, anesthesia, blood transfusions, you name it.  On top of it all, Christian got an ear infection, RSV, and was also teething (molars…yikes)…  but we had one goal, let’s get this fucking cancer out of our baby’s body.

On October 17^th, we completed phase 1, the induction phase.  It’s also the day we did a biopsy to see if the leukemia was gone.  On October 19^th, I knew we were going to get the results.   Around 10am, Christian fell asleep and I decided to pray before I called his doctor.  I got on my knees, and prayed harder than I ever had in the past month.  “Please God, give us good news so we can move forward.”  As I left the room to call his doctor, my phone rang.  It was Christian’s doctor.  “Hi Suzy.  I have great news.  Christian is all clear. His spinal fluid was clear.  The cancer is gone.” I jumped up and down, hugged my mom and felt 10 lbs lighter.   I felt like I was holding my breath for an entire month.  Even though the doctors told us that this was expected, as a parent, you still fear the worst.  So, hearing the word “remission” was an accomplishment for all of us.  This is what we prayed so hard for.  No more cancer cells in that little body anymore.

Shortly after, we received a roadmap for Phase 2, the consolidation phase.  Our excitement was short- lived. This phase is to make sure the cancer never comes back…it is more intense.  So, it was scary to see that he would get more medication. As a mom, you try as hard as you can to be positive, but a chance of relapse is always in the back of your mind.  What if it comes back? My husband is going to kill my when he reads that <.  He hates that word.  But I can’t’ help myself.

Today, 3.5 years later we’re trying to live life as normally as possible. Christian is done with chemo treatments but we still deal with side effects and developmental delays.   Cancer at any age is terrible but I pray that one day we will put an end to all pediatric cancers, so our kids can be exactly that…kids.

This experience taught me that the small stresses that we are so concerned about in life are not as big as deal as they should be.  You start to realize what’s really important in life.  Life can change so unexpectedly.

Before Christian’s diagnosis, everything seemed bright and set out in front of us.  All of a sudden, everything was dark and unclear.  Everything that was once in my control had been taken away from me.  Nothing mattered anymore, not the future, and definitely not the past.  All that mattered was right in front of us – the battle that we had to all fight together.   There’s a quote I came across; when someone has cancer, the whole family and everyone who loves them does, too.” Our immediate family was at the hospital every single day, ready and willing to do anything that was needed.  I couldn’t have gotten through the first month without them.

I posted on Instagram and shared on Snapchat and was flooded with prayers and support.  I’m so grateful for that.  Moms told me that I’m strong.  Strong? I was breaking apart; I still do sometimes.  But I promised myself that I would never show Christian that.  I shared because that’s who I am and I’m beyond blessed to have a social following like mine. I’ve spoken to other moms who have gone through this same situation all alone.  They secluded themselves from the world, complete isolation.  I was lucky to have support from mom’s who have been through all of this.  Actually, they explained the process better than the doctors!

I just want to take a minute to thank everyone who offered me and my family support during this rough time.  I know many of you had us in your prayers and thoughts and I truly believe that the positive energy helped bring us to the finish line.  Today I ask for your help, any donation counts. Please read below:

Since the early 1960s, five-year survival rates for many blood cancer patients have doubled, tripled or even quadrupled. And many LLS supported therapies not only help blood cancer patients but are helping patients with other cancers and serious diseases. In fact, drugs first approved for blood cancers are now approved to treat patients with stomach cancers, skin cancers, and autoimmune diseases like rheumatoid arthritis.

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