Retracing Our Steps


We made it to Newport Beach. We weren’t planning this trip, but that is how life works now, we do things on a whim and live in the moment. The drive was surprisingly not difficult. But, there was an obvious missing piece as we made the identical trek we did 7 short months ago. How do I live in a world where he isn’t here? How is it that 7 months ago he was a shining light and the peace maker in our family? He was the epitome of joy! He is still our joy, but this missing piece, this hole in our hearts is so unfair and painful. 


We are making all the same stops, retracing our steps. Today we stopped at the lighthouse park where Hayes went down the slide over and over again with the help of Steve and said “one, two” over and over again as he slid his froggy legs down the slide. Seeing that slide made my stomach drop. When we were here, we had no idea that our world was about to change forever on the drive home. We watched as Hayes experienced sand in his fingers and his toes. He even ate a few grains of sand and I loved it, because that is what babies do….he was experiencing life as a normal cancer free baby.  It is surreal. I was so naive. I sat on the beach and felt fresh heart break.  I looked to the side, and there, sitting in the sand next to our family was a bright green ball, lying unclaimed in the sand next to us.  A #HayesHint, a love note from our baby.  He was there.


It was then time to go to that all too familiar swing at Balboa Pier.  As we walked up to the park with the swing I found myself questioning if we did everything we could for our baby. I know we did, but there was this little doubt that kept creeping in as I remembered how perfect and healthy he was when we were here. Cancer was a bump in the road, we had made it through mostly unscathed. We were the lucky ones. Tears burned my eyes and heart break squeezed my chest as memories slid through my mind of a day when life was more than anything we had hoped for. How quickly life changes!  Being there was spiritual, though.  I felt him close.    What are the chances that his swing was empty, slightly swaying in the ocean breeze?  He was there! We all held each other and cried.  I reminded Bo that our hearts were remembering the love we have for him and that is why it hurts so much.



But the most amazing thing is, I feel like Hayes pushes us to do everything we do. In May, The HayesTough Foundation raised money for a brain tumor family. We found a beautiful family in Southern California whose baby girl has the same exact cancer Hayes had. She is midway through treatment and in the throws of the sicknesses that are all too familiar. We weren’t supposed to be down here, but things fell into place and now we are able to go visit them in person and give them the check from #HayesArmy in honor of Hayes….little miracles reminding us that Hayes still has a mission.


On top of that, we had no intention of taking our kids to Disneyland. We did it with Hayes in November and part of me wondered if it would be too hard and too sad of a reminder of a life that is gone now. But then Hayes acted again. A follower that we have never met sent us tickets to Disneyland as a gift. He paid for our entire family to go enjoy ourselves again. What an incredibly kind gesture. One that I cannot begin to express gratitude for. There really are amazing people in the world that are truly being a part of the good. All of which have been #HayesInspired.  I have no doubt, Hayes had his hand in this.

The world is not the same without my boy physically here, but he still lives. He is still leaving his mark. I see it around every corner. In the messages I get from you all. In the hints he leaves me everywhere.  In the good that is coming from his legacy! Hayes still lives and I am honored to be his mom as we retrace the steps that remind me of him.  One step at a time.

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A Second Chance

Over the past 2 years, I have transformed into who I am now and I imagine that I will continue to evolve over the years as different emotions come to the surface.  There was the pre-diagnosis me…the me that just lived every day.  Laughed, was more introverted, was easy going and care free, was unaware, but was also a stickler for schedules and routine.  Nothing got between the babies and their nap time!  I dreaded vacations, outings, activities and time away from home because nap times would get thrown off and frankly, I preferred the safety of my walls.  It was easier. That is what happens when you have triplets, you become intense!  You live and die by routine.  A big part of that old me died the day Hayes was diagnosed.  

I remember waiting in the hospital waiting area while Hayes was in surgery to remove his tumor.  I sat in silence with my face in my hands and waited and cried and dreaded different scenarios that played out in my head.  Just 24 hours before, I had been home with my kids, playing with toys and caring about pointless things like what I would wear and how I should do my makeup.  How quickly life shifts on its axis.  

I remember the moment when Steve’s phone rang.  It was the doctor telling us he had finished surgery and he wanted to meet with us and go over how it went.  I remember the distinct and crushingly overwhelming desire for the surgery to have been a success.  We didn’t want a partial tumor removal, we wanted to hear he had removed it all.  That is all I wanted to hear, all I cared about.  I couldn’t hold back the anxiety ridden tears as we headed to that meeting because I needed to hear this so much!

We walked in, sat across the table from the neurosurgeon and heard the sweetest words.  He shook his head in shock and told us that he couldn’t believe it but he had removed the entire tumor…a complete resection.  It was a miracle!  While I knew we had a long road ahead of us, I also knew that this was my second chance with my baby.  I was getting more time and I was never the same, the new me was born.

I now began to find joy in the simple things.  A smile, playing with toys, and seeing Hayes sit up again, those things became my happiness.  When our family was blessed to be together again, we grabbed those moments and didn’t look back.  We were never again going to be held back by schedules and routines because for us, that wasn’t living.  Being together, being a family…this was our second chance and we were living!  Any day away from the hospital was spent together.  Last minute trips to St. George, walks as a family down to the food trucks, trips to the grocery store, sitting on the couch as a family, impromptu walks in the heat to the candy store, getting the babies out of bed to play at night when everyone else was sleeping…this became our joy.

I am so grateful for that second chance we were given.  I have thousands upon thousands of videos and photos of times that I now appreciated, moments that before would have gone unnoticed.  Everything was big, everything was fantastic and everything was beautiful!  I used to wear Hayes around in a baby carrier, in fact, for probably far too long.  He was so long and really had outgrown the carrier, but I didn’t care.  I wanted him next to my skin forever.  Every blink, every smile, every giggle…I wanted to feel it and see it all because this was my second chance and I now knew how quickly life could change.  Never again was I taking this beautiful life I had been given for granted.

Now, when Steve asks if I want to take a last minute trip to California, I say without hesitation, YES!  I dread the fact that Hayes isn’t physically with us, but this is what he taught me.  This is the gift he game me.  To realize that every day, every second and every moment I can find joy.  Happiness is found in the simple things.  A nap can wait, the babies can get grumpy, the house can be dirty but those memories, those moments are fleeting.  Summer is just beginning and my goal is to be present.  All of my kids need the me that lives and sees beauty.  This is my second chance!

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Momcologist

Summer is coming, there is a warmth in the air and with it comes my wardrobe from the back of my closet. A wardrobe I haven’t seen since last summer. Last summer when I had all of my babies under my roof. Last week was really warm. So warm that I was able to pull out the gladiator sandals that I hadn’t worn for almost 12 months. In that moment, I was excited because summer is my favorite. I love the warmth of the sun shining on my skin and feeling the little beads of sweat building on the small of my back. Most of last summer was spent in the hospital with Hayes. Some days I didn’t even leave the surrounding walls of Hayes’ hospital room. I was constantly engulfed by the filtered, dry, cold air of the hospital for almost the entire summer. So sliding my feet into those sandals got me excited because now they would be able to step in the grass and not have to monotonously walk the white tiled floors of the cancer unit. I walked down the stairs with a little hop in my step, headed straight into the backyard and sat on the back patio steps that had already warmed up in from the sun. I looked down at my feet at my sandals and I noticed some white spots of something that had stained the leather of the sandals. In that moment, tears began to well. I knew exactly what it was. A sad momento from the previous summer. It was stained from one of the countless times Hayes had vomited up his milk. It had splashed on my shoes and now I had a constant reminder of Hayes. A sad little splatter of breast milk like graffiti that said “Hayes Was Here!” Cue the never ending tears! The odd thing is that as sad as it made me, I still haven’t washed them off.  


It got me thinking back on all of those symptoms that just became regular life. Symptoms that were just a part of my every day because my child had a brain tumor. Vomiting was one of the first signs that Hayes had a brain tumor. It was one of the many symptoms.
In the beginning, it was small. I began noticing that Hayes was irritable. For him, this was not normal. He was my happy baby and all of a sudden there was a switch. The only thing that would console him was sleep. He would have slept all day if I let him.  


The babies had all learned how to sit on their own around 8 months old. We had worked hard to build those muscles and they were getting stronger every day. But then, I began to notice that Hayes could no longer sit on his own. Within weeks, Hayes had lost his ability to sit on his own completely and then he could no longer lift his head during tummy time. I tried to make excuses. I blamed it on teething, ear infections, a cold…anything to excuse away the fear that was building in my gut.  
I remember one morning handing him a toy and he grabbed it with his right hand. For me this was odd because babies usually grab things with both hands. So, I moved the toy closer to his left hand and he reached across his body with his right hand, without moving his left hand at all to grab the toy. I had zero clue what this could mean but I knew it was a sign of something bad. Within those few weeks he no longer used his left side.

Hayes no longer doing tummy time
It was around this time that Hayes also began to throw up. I changed my diet, I switched to soy. I tried everything I could to settle his stomach. But it was in vain. Hayes would get a bottle and within minutes of finishing off the bottle, he would throw up the entire 8 ounces. Completely emptying his stomach. To be honest, at first it was a relief to me because I immediately came to the realization that he had a stomach bug. I was relieved because now I had a solid reason behind Hayes’ behavior. But then I wasn’t relieved. A week after the vomiting began, he could no longer hold down a drop. I was now panicking.
The last symptom that really set me off was when Steve and I were googling symptoms and all signs pointed to meningitis. The strangest sign of meningitis was the raised soft spot. The babies were napping at that time and Steve grabbed a flashlight, ran full speed up to the babies room. He quietly opened the door to their room and shined the flashlight on Heaths head first. His soft spot seemed slightly sunken. Then he walked over to Hayes’ crib, shined the light on his head revealing an unmistakable raised soft spot. I was so scared. If you google raised soft spot there are three really  frightening diagnosis’. Those are meningitis, hydrocephalus and the last possible diagnosis was a brain tumor. I was sure he didn’t have a brain tumor so I convinced myself he had hydrocephalus. 
I remember being scared but after reading up on shunts, I decided that out of the three possible sicknesses, hydrocephalus seemed the most treatable. We now see that my own diagnosis’ were wrong. A brain tumor could not have been farther away from my radar. But that is what he had. He had hydrocephalus but that was the result of the tumor. What a horrifying nightmare!  

As a mom of a brain tumor warrior, there are so many things I know I have in common with other warrior mother’s. We become momcologists. We are able to read our child’s symptoms and sometimes diagnose better than even the doctors themselves. We have reflexes that we didn’t ever use before…..vomit, the symptom that scares a regular mom to death. But, for warrior moms, our instincts kick in and we catch the throw up with our bare hands without batting an eye. We give our child shots, we flush their central lines, we place feeding tubes back through the nose, we change their dressings and we problem solve! All these abilities were qualities I never knew existed inside of me before. I am stronger than I knew. They are stagnant qualities that I feel every mom possesses, buried deep down until needed.
I guess that is why I haven’t washed off my sandals. I don’t want to say goodbye to a part of me that I am proud of. I still have an alarm that goes off on my phone every day that says “zofran”. I miss that feeling of having my baby rely on me wholeheartedly. I am so proud of the person I became during Hayes’ treatment. Although my life is arguably easier, I miss that fight. I miss giving Hayes his meds. I miss changing his feeding tube. I miss flushing his central line. It was the one time in my life that someone relied on me, 100%. I hope to teach my children that they are powerful, they are strong and they are fiercely loved by their mother. To all those moms out there fighting for their child. We see you!  You aren’t alone.  You have an army behind you! #hayesarmy

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Brain Tumor Awareness Month

May is Brain Tumor Awareness Month…it’s a real thing.  I actually despise that there has to be an awareness month, but heartbreakingly, it really is necessary. Before Hayes was diagnosed I did not realize that there was an awareness month, or that Gray was the color for brain tumors or that brain tumors are the leading cause of death in children.  I had absolutely no clue.  I knew that brain tumors were a bad thing, but I assumed it was a rare thing that never happened, like a scary lottery.  You want to know a frightening statistic?  Your chances of winning the lottery is 1 in 175,000,000.  Chances of your child getting cancer is 1 in 285!  Out of that number, 26% are brain tumors.  But here is the thing, just like you, I think numbers are so arbitrary…they lack emotion and connection.  These kids are so much more than statistics!  I would say that I have literally gained hundreds of friends through social media of parents of kids with brain tumors.  People I never knew before but we have a link, and now a deep connection.  We are parents of brain tumor warriors!  It is a club I wish on no one.

I remember one night up at Primary Children’s Hospital.  I had just laid Hayes down for bed and I needed to get out of the room and eat dinner.  The Ronald McDonald room was located on the 3rd floor and they were giving out a free meal.  I was so sick of cafeteria food so I made my way down to get my free meal.  If I am being honest, Steve and I really didn’t like going there.  It was depressing to be around other sad parents.  But, I was sick enough of the cafeteria that I ignored the hesitation and went to the Ronald McDonald room anyway.  

I sat down at a table of other quiet parents, sadly eating their food in silence.  I couldn’t eat my meal in silence so I asked what brought them there.  A couple of parents were there because their kids had RSV and I listened as they told their frightening stories.  Another mom was there because her son had cancer.  I immediately reached out to her, feeling that connection of cancer mom to cancer mom.  I asked her what cancer her son had and she told me leukemia. She reciprocated the same question and I replied with “brain tumor”.  Her face immediately dropped and with total sympathy she said, “Wow, that’s really, really bad. I hear treatment is the worst for brain tumors and results aren’t great.”  She continued on with the shocking responses over and over again.  With each response my heart dropped a little more with the reminders that we really were in a terrible situation.  We were a part of the cancer club, but in that moment I felt even more isolated as I realized that I was a scarier subtype.  I tried to stay as optimistic as possible but in moments like this I would immediately be brought back to the reality that I desperately wanted to ignore. The reality is, research is massively and significantly behind for brain tumors as opposed to other cancers.  I tried to loop Hayes in with the other cancers to keep hope alive, but if I am being honest, the second that Hayes was diagnosed with a brain tumor he was at an extreme disadvantage.  Many kids survive brain tumors, but many more do not.  Breaks my heart to even put that into words, but it needs to be said.  These kids deserve to be fought for!  This is why Steve and I went to D.C.  We lived through the nightmare of a child with a brain tumor.  I dread other parents receiving a cancer diagnosis’ for their children!  Brain tumor or not, cancer is a real life horror that is killing more kids than AIDS, cystic fibrosis, asthma, diabetes and heart disease COMBINED!  Cancer is hunting down our children and it feels like the government is ignoring it.  The challenge that comes from the government not funding more than 4% on childhood cancer research is that it is our job to donate to foundations that fund private research and donate to cancer families! Here is one final frightening statistic, in 3 days, Americans will spend on Starbucks coffee, what the federal government spends all year on childhood cancer research. So, for the month of May, I have a challenge for you all.  Whether it is Starbucks that is your weakness or a Coke Zero, try to forego one day of paying for a drink and donating what you would have spent, to a foundation.  Do this for a whole week, once a week, once for the month. Whatever you can.  There are so many good foundations if you already have your favorite or there is the HayesTough Foundation (wink, wink, nudge, nudge 😉). Imagine the difference we could make if we all did this together!  🎗🎗🎗

For everything donated during the month of May, we will donate proceeds to a brain tumor family!  Let’s change the world together. #hayesarmy

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It Brought Me to My Knees

I remember the day we got the call. It was a busy Monday evening and I was making dinner. Steve had just walked in the door from work and the kids were doing homework. It was a typical crisp, fall evening. My phone rang and on the caller I.D. it said Primary Childrens Oncology. My heart dropped. To be honest, it always did when that name popped up on the caller I.D., but Hayes had just had an MRI and a permanent shunt placed. He had been vomiting a lot so I was worried they were going to have us check Hayes back into the hospital and have him observed. I didn’t want to go back.  I hesitantly answered the phone and there on the other end was the all too familiar voice of Hayes’ oncologist, Dr. Bruggars. The kids were loudly playing in the kitchen behind me and I heard the doctor ask if I had a second to talk. I told her that I was listening and she continued on with our conversation. She asked me how Hayes was doing and I downplayed his vomiting. I selfishly didn’t want her to have us come in because I knew it couldn’t be that big of a deal. Thanksgiving was 3 days away and I wanted our family together for the holidays.  

I remember so clearly, she told me, that they have been looking over Hayes’ MRI and the information she had to tell me couldn’t wait. She explained that Hayes’ cancer had returned. I immediately dropped to my knees. Never in my life have I collapsed in fear, but in this moment I dropped to my knees, at the foot of my kitchen stove in complete horror. I listened as she continued and the tears began to flow. It was at that moment that Steve walked in and found me on the kitchen floor crying. He of course began panicking. The kids ran in to see me and I am sure the image of their mom shattered and collapsed on the floor will be an image that is seared in their memories forever. Steve asked me what was going on and I mouthed “it isn’t good” as I let out a moan of pain. Literally, pain, I felt actual pain in that moment that had taken me to my knees and I was trying not to throw up. Steve shuffled the kids out and returned to my side and rubbed my shaking body as I cried and listened.  He didn’t know the conversation I was having but he knew it was awful and he began to quietly cry next to me.

I vividly remember thinking, well, we did it once, we can do it again, we are fighters, but then she broke me down further. She said that the area that the tumor was located was in an area of the brain stem where surgery was not an option. She explained that she didn’t know how long Hayes had. Chemo was not an option and we could try radiation to buy some time. But that is all it was, buying time.  I remember her saying she was worried about him being uncomfortable and dehydrated and wanted me to have him admitted to get him on fluids and pain management meds. My hands were over my face and I writhed on the floor, angry and devastated in utter heart broken tears. She said they were getting a room ready for him in the cancer unit and to head up as soon as possible. I don’t think I said a word, but she definitely heard my crying moans in the background. She ended the conversation apologizing. She said she was heart broken too. 

The phone clicked off and I dropped it to the floor and let out all the wails I had held in during our one way conversation. Steve picked me up and sweetly told me we needed to talk in our room away from the kids so that they didn’t have to be scared. He carried me up the stairs and set me on the bed. The door closed and I began hyperventilating as I told him the news through shallow breaths and tears. I remember so clearly what I said. The first time I had ever said the words, “Hayes is dying.” For the first time ever I realized I didn’t have much time left with my boy. The week before we had been in Disneyland and now here we were, 7 days later, realizing that our perfect baby boy was quickly preparing to leave his earthly body and we just had to watch and wait. There was nothing we could do to fix it.  

I remember asking Steve, what was the point of this past year if all it did was lead us to this point, having to let go of our precious boy. I couldn’t bear it and anger rushed into my heart. I was angry at God because I had had so much faith that Hayes was going to get better, that he was going to live a long boring life. My faith seemed to make no difference in the outcome. I knew I could never forgive God for taking my boy.  

We packed our bags and through the tears made one of our last trips up to Primary Children’s hospital. Hayes was very uncomfortable and now that we realized it was serious, we were desperate to get him comfortable.  

We walked through the doors of the cancer unit and were welcomed by the familiar faces of all the nurses we loved. They had heard the news and they greeted us with tears and hugs. I am sure they had seen this so many times before but they made us feel special and I appreciated the love that they showed for Hayes. Hayes had left a mark even on the nurses that see these sick kids everyday.


They hooked him up to an IV and started the flow of morphine immediately. It was such a relief to see him sleep. All I cared about in that moment was giving him comfort. Our poor sweet boy.  

We turned off the lights to let him sleep and squished onto the teeny little pull out twin bed for parents. We held each other and cried. We cried and cried and hugged. I remember when we finally spoke and for the first time in a year of fighting, we shared our fears honestly. We realized that to protect each other, we had never been completely honest and had always just reassured each other that Hayes was going to be ok. When deep down, my biggest fear during all of it was that if we lost Hayes I would lose Hayes and Steve. I never worried that I would lose Steve physically, like Hayes, but I was scared to death that Steve was never going to be ok again. That I would never see him smile again. If we were going to lose Hayes, I needed Steve. I couldn’t do it alone.

I remember Steve telling me, “You know what the point of all of this was. The point was that we got the best year of our lives. It was a gift. It was a gift from Heavenly Father. He did not forget us…he gave us the gift of Hayes!” In that moment the anger left me! I felt a rush of sweet gratitude. A gratitude I had never felt before. How lucky were we? Some people live a lifetime and never have the chance to meet, let alone love, a warrior like Hayes. He was our son and a part of us! Forever!! We were heading into complete devastation still, but it didn’t take away the fact that he was a gift! Hayes was a gift to the world!  Our family was going to be ok, with Hayes watching over us from heaven.

For those that question our motives in life and question how we can possibly be ok after such a heartbreaking loss, this is why. Hayes is our reason for everything. He continues to be a gift and we will continue to share him with the world.  He is our motivation and at those moments I ask myself why, he is there patting my back and telling me to keep going.  This is all for him. He wants us to change the world of childhood cancer and I refuse to stop until that happens.

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