This time last year my family gathered at Children’s Hospital for Kai’s last Thanksgiving. He was so near the end that day I could not help but think how different thanksgiving would be from then on. I could not help but think of all of the families who had already lost their children and were trying to celebrate despite their loss. I could not help but think how I didn’t want to ever spend another thanksgiving out of that hospital, without Kai.
It has been a year and this is year is different. The anxiety of the one year mark, Kai’s angleversary, started months ago and at some point early on I realized that although Kai was with us last Thanksgiving, this year his anniversary date was going to come the day before Thanksgiving.
Next year it will be on Thanksgiving….
It took me a while to process and accept these dates and times. Trying to figure out a way to honor his death while also trying to celebrate Thanksgiving with my family seemed entirely impossible.
In the weeks leading up to Kai’s anniversary, one year since his death, I just did not know what to do with myself. I wanted to run away, hide under a rock, scream and cry. I wanted the world to stop with me because I could no long keep up. Every morning lately has struggle to get out of bed, to get to school or work. Every night has been a struggle to stop my mind from racing long enough to fall asleep.
This year is different and although I have many things to be thankful for, celebrating the one year anniversary of my sons death the day before thanksgiving is not one of them. Having one year pass is scary. It doesn’t seem possible to have lived an entire year without him. I hate that I am so far from the last time I held him. I hate that my firsts with and without Kai are over…
Thinking of how to honor Kai this year was very difficult. I don’t have the thoughts and memories of siblings to influence our day. I don’t even have the input of a spouse to lean on or bounce ideas off of. The weeks leading up to this anniversary, despite being surrounded by so many amazing family and friends, felt very empty and alone. I lost MY entire family this year and things will never be the same.
November 27, 2013 I packed up my car with some pumpkin whoopee pies, and a special glitter stick and drove into Boston in the torrential rain the day before Thanksgiving. I had planned to spend this day quietly and alone, somewhere by the ocean but at the last minute I knew I would much rather visit my friend, Kai’s friends, who has been in the hospital for the last few weeks.
Getting into Boston was a breeze. I drove through Allston to get to the hospital just as I had every week with Kai. I’m sure its not the fastest way to the hospital but it’s through my old neighborhood and that’s the way we always went. Driving down those lively, dirty, collage kid filled streets each week made me feel connected. It was familiar and made me feel at home. It represented a part of my identity that I clung to during those months of treatment, the part of me that lived before brain tumors and hospitals. Driving those streets made me feel like I belonged.
Today it still felt like home but that drive is now forever embedded in my brain in the part of my life that includes brain tumor world and hospitals and Kai. We drove that path so many weeks on our way to the hospital. We took walks and ate at restaurants there, Kai and I and Ashley and Joe and Molly and Chelsea and Pat and Lisa and Bill. I have years of memories in that neighborhood from my life before Kai and now I drive through there remembering the time I had with Kai.
It has been a while since I visited the hospital and a lot has changed. There are new doors and new halls and new employees working at the desk. What was once so familiar and comfortable is different now. It is not the same place Kai and I lived last year. Time is moving forward and things look different, people move on and next year will be different too. Kai being gone one year is not the same as him being gone one month and next year will be even different still and I’m just not ready. The more things change the more the memories start to fade and I’m not ready for that. I don’t want to be that far away. One year and one day, today.
I walked quickly through the lobby back to the old elevators that have not been repainted or moved since the last time I was there. They look exactly the same as when I left them and that felt comforting to me. My heart raced a little as I pressed the 9th floor button. We stopped at 1 and 7 and then 9. I step out,
“Thank god it all looks the same.”
I made a pit stop at the bathroom at the end of the hall. The same bathroom I visited one year before on the night Kai died. It felt ok. I could do this. I could go in and see our friends and be ok.
I had a great visit with our friends Hailey and Lisa. We were in clinic each week together all through Kai’s treatment. When Kai landed in the ICU last year and then transferred over to the comfort room Lisa came to visit every week while Hailey was waiting for chemo to start. It was nice to go visit them and see Hailey so strong and know they would be going home soon.
To my surprise many of the nurses and staff still remembered me all this time later and Lisa told me they will still remember us next year too. It felt good to be there, like Kai was close by. Maybe this is the feeling most people get when they visit the cemetery. Kai’s ashes rest in a little urn in my room that I see everyday, but taking time to go someplace outside of my everyday life to honor him felt good. I’m glad I can do that I can do that in the hustle and bustle of the hospital instead of the quiet cold rolling hills of a cemetery. This feel right to me.
After a few hours I took the long walk back down the hall and into the elevators to go home. I paused a moment in the lobby to consider all the families who would be spending thanksgiving there tomorrow, all the families who were near death, and all of the families who would be spending thanksgiving this year without their children like me. I paused a minute to remember walking out that door into the night a year before, the last time I saw Kai.
I agonized over what to do on this day. I knew nothing would feel right and nothing would feel wrong but I still had to come up with something. In the end Kai put me in the right places at the right time and I am thankful to have spent the day with some special friends and lots of memories.
On my way out the women in front of me paying her parking ticket was getting flustered. I looked up to see what was going on and I watched as three different cards got declined as she tried to pay the $10 parking fee. I told her I would like to pay her ticket in honor of my son’s anniversary. I brushed over it quickly as her young daughter was standing right there, telling her I was there to visit a friend and I asked if they were there visiting or for an appointment. She told me they came in every 3 months because her daughter has diabetes. She told me she just deposited money at the bank and she didn’t know why it wasn’t go through. I asked her to please allow me to pay so they could get on the road and beat the holiday traffic.
The women behind the counter smiled as I signed the receipt paying for both of our tickets. I had done so well keeping it together in the hospital all day but the minute that mom and daughter got on the elevator I sobbed.
I still don’t know what to believe about the after life or angles or spirit but in that moment I knew Kai was all around me. He continues to change the way I live my life everyday. His strength lives on in those of our friends who are still fighting. Our memories remind me that now matter how much things change or far away we are my life will always be a part of his and his of mine.
This year as I try to drag myself out of bed, take a shower and put some makeup on to meet our entourage for Thanksgiving dinner, I am thankful for the memories because sometimes that’s all we have left.
“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.”
This is the story of Kai’s death. I wrote it the day after he died and thought about posting it many times before today but was just not ready. Today, a year later, I want to share the last moments I spend with him.
****A warning it is a detailed account of his death. Please consider this before reading any further.
Kai’s departure from this world was as labored and long as the day he was born. It was surreal like I was watching myself from outside my body, exactly the same as I felt during labor. I was so focused on him that the rest of the world no longer existed. It’s shock I guess, neurons firing and hormones pumping through the body in an attempt to keep us alive despite the unbearable pain.
Time ceases to exist and a sense of calm comes over you despite the extreme urge to scream.
…This can’t be happening.
The last few days he did nothing but sleep.
I was constantly torn between savoring every moment of time with him and trying to tell him it was ok let him go. I whispered in his ear that I was ready if he was that it would all be ok…trying to convince myself. Trying to prepare myself.
He was so gracious to let us hold him and touch him and talk to him in those last days. I remember thinking to myself that if he were an adult we would not be bothering him this way. We would not be passing him around, touching his face, opening his eyes. I wondered if it was too much for him, but we needed it. I needed it. And he didn’t protest.
Day and night blended as if all one big long dream. His eyes remained closed, his body limp and dry but his heart was still so strong. He went from breathing hard and fast to slow long pauses and everything in between. By now I knew he was living in a place between here and there….wherever there is. I knew all I could do now was hold him and pray he go peacefully.
As the hours and days passed I became more and more angry that this is how we let people die. That every minute of everyday my baby was just wasting away, dying before my eyes –slowly, quietly little by little and there was nothing I could do except be there and try to convince myself it was ok. Try to tell him I would be okay in hopes that that would somehow make it easier for him to let go.
It was agony.
I became sad and angry and resentful that his little body was so strong. His heart and his organs kept living on, while his spirit and mind were so far away from me. Feeling his heart beat felt like torture, waiting for it to stop…wanting it to stop, so he could be at peace. I made me so mad that because of the chemo and that stupid tumor we could not even donate his strong organs to save another. Because of the chemo and that stupid tumor we had to just wait for his heart to stop beating and his lungs to stop breathing and that would be it.
The last night his breathing really changed. In the morning it was very low and quick and crackly from the fluid in his throat and lungs. We increased his meds all day hoping to spare him any pain, to spare us the pain of seeing him struggle. By the evening we got him to a good place where he was no longer struggling and he was able to rest and I knew this would be the night.
A few hours later his breathing changed again. With every exhale he made this tiny little ‘ahhh‘ sound. It was the sound of relief, euphoria, maybe shock I guess. It was beautiful to hear that sense of calm and peace. I hadn’t heard his little voice in weeks and I couldn’t help but smile hearing him. I couldn’t help but feel thankful that this is how he would feel as his body let go and he slipped out of this world. He was peaceful and I felt an immense sense of relief that I had only felt one other time in my life –the all-encompassing relief I felt the first time I heard him cry.
I couldn’t take my hands off of him. Ashley, my mom and I all lay on the bed intertwined in each other so afraid to look up or let go knowing it would be any minute now.
No one said a word.
As we lay there his moans turned from clam to scared. I watched his face winching in pain as his body put up one last fight for his little life. Watching him struggle like that was the most scared and helpless I have ever felt in my entire life. I tried to comfort him, my body curled around his surrounding him with every once my soul. Crying in desperation that this be over for him. As I stared at him, terrified, his eyes popped open for the first time in days – wide open fixated in a place beyond this world. As I stared into his eyes a clear fluid started pouring out his noise and mouth. He was vomiting, silently. He didn’t move a muscle.
I thought this has to be the end…please let this be the end for him.
I scooped him up and he started to choke. Nurse Jess came in and out with one med after another trying desperately to ease his discomfort and spare us all from the agony. The door swung open and closed as more nurses came in and out. Jess worked quickly and silently, one med after another. The room was spinning and at a stand still all at the same time. Mom and Ashley backed away to the edge of the room trying to hold themselves up on the wall and I held him in the big bed, under the dim blue light of the room.
I held him so tight and close so ready for it to be over for him and so completely unable to even begin to imagine what I would possibly do when it actually was. I held him, the room was quiet and his body was still. I looked up at Jess and we stared so deeply into one another’s eyes I knew he was gone. I knew none of us would ever be the same.
She slowly put her stethoscope to his back and turned to the clock and we all watched as the second hand ticked in slow motion. She held my arm and told me he is gone and she slowly backed away.
He was gone.
It wasn’t at all how I had imagined. I never felt his last breath like I expecting. He didn’t deflate like a leaky balloon. He just wasn’t there anymore. I sat and held him, just as I had before. I knew his heart had finally given in. I knew he was no longer taking in any air but holding him for those moments right after felt just the same as when we was alive. I held him for a long time all swaddled up in his favorite blanket with nothing but a diaper on, just like the day he was born.
I inspected him and smelled him and couldn’t take my hands or my eyes off of him. I stayed as close as possible afraid to feel the warmth leave his body. As long as I held him close my warmth became his and we could stay embraced like this forever.
I lay with him, his head under my chin still stroking his hair and touching his face now without looking. As the minutes passed I knew his body was changing and I knew I didn’t want to see him this way. It was time to let go but my body was so incapable of putting him down. I looked down at him and there was nothing left of my baby. His body was changing. He was gone and I suddenly felt an overwhelming urge to run. I don’t want to remember him like this. I can’t handle feeling his body so lifeless and cold. I asked Jess to stay with him and I forced myself to get up and I walked out the door.
It was the middle of the night and the hospital halls were dark and quiet. My mom and Ashley followed me out staying a few feet behind, all of us trying our best to put one foot in front of the other. I felt like I was floating. I felt hollow and nauseous, like my body had left me to be with Kai. I felt like I could just collapse at any second.
I felt like I could scream or maybe just evaporate into the night like a ghost. I felt weightless and like lead all at the same time. It took all the strength I had to get myself to the bathroom at the end of the hall before collapsing or vomitting. I walked in locked the door and dropped to the floor, numb, dizzy, empty blinded by the bright florescent light. The tile floor was cold beneath and I began to shiver. I pulled myself up to the sink and without looking in the mirror, splashed cold water on my face as if to convince myself that I am still here. To just feel something.
As the water hit me I felt an uncontrollable thirst and all I could think was that I had to go back to the room to get my water. I NEEDED to go back to Kai. It was to much to never see him again, never touch him again. I was not ready. It was worth the risk of seeing him like that, feeling him cold, seeing the color in his body turning…I would do anything to just kiss him one more time. It will always be worth anything to kiss him just one more time.
I walked back down the hall without saying a word. Jess met me at the door and we all walked back in. My water bottle was on the far side of the bed next to the window. I walked over and grabbed it staring out the window afraid to look down. I took a sip and sat down on the bed still looking out into the black night speckled with the glow of the hospital rooms in the building across the way. Rooms where other babies were fighting for their lives, or perhaps descending from them. Just knowing he was close was enough.
I took another sip and placed my hand on his chest, still looking out the window- now noticing the reflections of the room behind me bouncing back at me in the huge glass wall that had become our home. He was still swaddled in his fuzzy blanket and still felt so soft and warm beneath my hand.
It wasn’t long before I was lying with him, kissing him again, touching his hair. He felt different now. He looked different. I could no longer save myself from seeing his body this way, dead, but I could still hold him. I knew in my head that he was gone, but holding him still felt good. I looked at his peaceful little face peeking out from his warm soft fuzzy blanket and he looked just perfect and content just the same as the day he was born.
I hate that every thought I have, every event I go to, every changing of the seasons all I can think is “this time last year…I was with Kai…” And now the thought that soon I wont be able to say that any more, is devastating in a whole new way. As Kai’s anniversary approaches it is really hard to believe almost an entire year has gone by. I don’t want to believe it. It doesn’t seem right. Some days I feel like it was yesterday and somedays it is uncomfortably far away. It is hard to think of how different my life is without him, yet I feel like he is still in my life everyday.
Today I woke up and looked out the window and could not stop thinking about this time last year.
This weekend last year Kai and I played. I stayed up late making him a Halloween costume. My mom spent the weekend with us to join in the joys of her grandsons 3rd Halloween. We met friends at the park for trick or treat, went to a cancer kid costume party and attempted pumpkin picking for charity.
First stop was the little park in town where our moms group friends had organized a costume party. I rushed all morning putting the finishing touches on Kai’s costume and putting together some ‘healthy’ treats to share. It was beautiful out. Crisp fall leave blowing off the trees as the last late rays of summer sun warmed us as we stood on the wet wood chips, soaked from the rain the night before. I wore a t-shirt and flip flops. It was too warm for Kai to wear his mommy made Harry Potter scarf. I feel like I can remember every detail of this weekend last year. It is the last weekend I remember before going into the hospital for the last time.
As we stood awkwardly at the edge of the playground I watched as whole families, mom, dad, toddler, newborn, poured out of mini vans racing towards their friends on the swings. The dads gathered by the cluster of strollers, rocking and swaying the newborns that were wrapped and strapped to them. The moms stood back prepping the treat table, wiping noses, disassembling costumes for better speed down the slide. Kids jumped in muddy puddles. I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting in my head….
What a beautiful day to be outside, I thought. I am so happy to be able to give Kai this experience. I cant believe I was able to make his costume and bake a treat this morning. I couldn’t have done it without my mother. I am happy to have her here to share this moment with her grandson.
Our life had been extraordinary for a long time by that point, but this weekend felt even more so.
This weekend last year we were living day by day. This weekend last year we knew Kai was dying.
I was in a manic state rushing around from place to place, party to party as to not miss out on one minute of memory making opportunity. I tried to convince myself that this is just what people do when you have kids. You go to parties and pick pumpkins and ‘make memories. But with every click of the camera came a consoling hug from a friend and the truth became harder to and harder to avoid.
We were invited to this party because Kai is sick. We are making these memories because we don’t know how much time we have left. Every time my mother asked people to squeeze in close to Kai for a pic, there it was…He is dying. We must document this moment of his life because this is probably the last Halloween we have with him.
I chatted with the other moms. I cooed over the newest newborns and admired the other clever mom made costumes. I smiled as I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting in my head….
Will this be the last time I make him a Halloween costume? Is he in pain? Does any of this matter? Why are we here at a park he can not play in trick or treating for treats he can not enjoy? Is he really going to die? Please don’t let him die. I don’t care if he ever jumps in muddy puddles or clammers for candy as long as I can hold him. As long as I can keep him safe and comfortable and happy. I will do anything. Please STOP taking pictures and looking at me longing across the park as if he is already dead.
A group of 3 and a half year olds came walking over to Kai to say hi. A little girl picked up his hand and turned to her friend and said
‘This is Kai. He is sick and he can not talk”
They huddled around him and looked up at me for an explanation. I told them he was sick but he liked that they came over to say hi. They asked about his costume, the ‘Z’ on his head, his little owl, his glasses. Then they ran off to play on the jungle gym.
Later that day the girls mom messaged me to apologize for what her daughter said. This mom was terrified that somehow her 3 year old had offended me, upset me, said the wrong thing. In the moment at the park with the kids huddling around Kai I remember thinking how refreshing it was that this mom had told her daughter about Kai. This little girl was not afraid of him. She felt confident to tell her friends about him and for me it was a moment I will never forget. To me it was a moment where I could see that Kai’s tiny little life meant somthing to those around him. Kai had a friend and that little girl wanted to introduce Kai to her other friends. And while that group of 3 year olds knew Kai was sick, to them he was not dying he was just here to play.
I am so thankful for this time last year with Kai. The last days we spent together living his life. Kai made many more friends in his 2 short years than I realized at the time. Ever now and then I still get messages from my friends of stories of Kai’s littlest friends who still remember him almost a year later. It amazing me every time how these little beings, 3 and 4 years olds, still remember their friend Kai. I can not tell you what it means to me to hear these stories. It fills my soul, usually on days I need it most, like Kai has planted this seed in your children to get the message back to me. There is no greater gift at this time than seeing his life through there eyes.
There is no footprint too small to leave an imprint on this world.
Three years ago today I my baby boy was born.
Kai should be turning 3 today. He should be starting preschool. He should be leanring and growing and celebrating his little life surrounded by family and friends as all three year olds get to do.
I can not begin to process how to feel about my baby not living to see age 3, so I am not even going to try.
Instead I would like to think about the day my little baby came into this world.
I started writing his birth story after he was born. Sadly in the midst of a move, a divorce and a broken laptop I can not find my original recollection of his birth. Re-writing his birth story now, after he is gone, will not be the same. There will be parts which I can now appreciate in whole new ways and parts to which I will now know better than I did then. I would give anything to have that original hormone driven, new mommy gleaming, idealistic account back. I would give anything to be blissfully naive to our life ahead. To hold that perfect little baby in my arms without a care in the world. I would give anything to relive those early days over again and again for the rest of my life. The days before cancer. The early days of mommyhood where you can do anything -no matte how little sleep or food or showering you get. The days when we would fall asleep in a chair in the living room instead of a hospital room. I would give anything for those first few weeks back, before I knew there was something wrong.
I woke up Saturday September 4th 2010 like any other day. It had been a beautiful summer, a great time to be pregnant, and this day was no different. The sun was shinning, the air was fresh with a hint of early Fall in the air. It was Labor day weekend and it was your due date but I had convinced myself that you would be late as many first born babies are. I was ready to meet you but not so anxious or exhausted or uncomfortable as to be wishing your birthday to come sooner. I was still very much enjoying my pregnancy.
The first few months of pregnancy were rough, unable to eat, nauseous and tired all the time but as the morning (all day) sickness started to subside, and my belly swelled to an obvious bump I thoroughly enjoyed being pregnant. I loved eating well and going to yoga for the first time. I love preparing your room, making you a quilt, searching for the perfect name. I loved reasearching cloths diapers, interviewing pediatricians, and wondering if you would be a boy or a girl. I imagine there is nothing more magical than a woman’s first pregnancy. Nothing more life changing and hopeful. I felt comfortable, obvious, built right into who I am. Destiny. Instinct. Natural. So effortless and completely meaningful all at the same time.
For the past few years I had studied to be a doula and Lactation Consultant. The process of giving birth and becoming a mother has fascinated me long before I even considered becoming a mother myself. I trust in the biology of the process and am enthralled with the psychology and sociology of mommy culture around the world. Consumerism, survivalists, attachment parenting, vaccinations, education, home birth, placenta, breastmilk, baby-wearing, history, it all symbolizes the purest real life a person can experience – dedicating your life to birthing and raising another.
Although I certainly had lots of ideals of what I wanted MY labor and delivery to be like I tried hard to prepare myself to be open to anything.. My hope was to have an unmedicated, vaginal delivery, breastfeed you minutes after giving birth and be back home the next day. I had developed a strategy of how I was going to get through labor: stay calm, keep myself busy and distracted, stay home as long as possible and continue to tell myself ‘this is going to get so much worse’ trying to accept and adjust so I could handle what would come next.
Around 9:30 that morning I began wondering if my amazing midwife was right her her prediction of your birth-day. I started having a slight tightening in my belly and a bit of blood and mucus when I went to the bathroom. I knew the early signs of labor well and I knew this was it, but was afraid to say it out load. Not afraid of labor itself but afraid of being wrong, of getting myself too excited to see you just in case today was not the day.
In an effort to keep myself busy, and perhaps in a bit of denial, I got dresses and drove myself to the craft store (of course) to buy some yarn. I had been busy making you things for months, blankets, curtains, booties, but I had this one sweater pattern I had been saving for labor. I slowly walked the isles of shop touching the yarn debating which color I should choose. Green, brown, grey, teal, orange, these could all be gender neutral colors. As I gathered up a soft flecked brown, a bright teal, and some soft green buttons I realized this could be the last day I would have to wonder if you would be a boy or a girl. (The past few weeks I had really been thinking girl)
I will never forget standing in line waiting to check out, having contractions smiling to myself lost in my own little world.
I came home and started to crochet. I tried several times to eat something, telling myself that I needed to stay hydrated and strong, but nothing seemed appealing. I spent the day bouncing on a yoga ball, crocheting, pacing around the house continuing to convince myself this might not really be it.
Gigi came home from work around 1pm and I was still doing well. I told her I thought I might be in labor but that it was early so your dad was going in to work.
The first call in to the midwife was around 4:30pm. I had been counting contractions and they were getting stronger and closer together. We talked for a few minutes and she told me that it sounded as if I was in early labor. She told me to stop counting my contractions and to call her back when I was feeling 100 times worse. 100 TIMES WORSE! I had spent all day telling myself it was going to get worse and I was feeling good but after almost 8 hours of early labor preparing myself for 100 times worse set me back a little. I felt my nerves getting the better of me. I felt lost and scared for the first time. I knew I was doing well but I felt silly for calling the midwife so early along. I called our doula, Cynthia, to let her know what the midwife said. She offered to come over but I told her it would probably be a long night so she should stay home for now. I went back downstairs, sat back on the ball and continued to crochet your sweater, focused on counting stitched rather than contractions.
A few more hours past and I called the midwife again. It was around 8 pm and there was absolutely no more questioning that tonight would be the night. The midwife said I still sounded good. She told me I could come into the hospital if I wanted but she still felt I had a ways to go. I wanted to stay home as long as possible so I went back downstairs to put the finishing touches on your sweater. The next hour things progressed quickly. Gigi and I ‘watched’ a movie, really she watched me as I was getting more and more restless. I started secretly counting the contractions again. I wrote them on a small paper and Gigi took a peak when I got up to use the bathroom. When I came back she looked like she had seen a ghost. ”Does that say 3 minutes?”
I had talked a lot about wanting a home birth and I think at that moment she was afraid she would be the one to deliver you! I told her it was fine, that I could walk and talk so I still have a ways to go. Of course with contractions 3-5 minutes apart, i could barely walk and talk through them but I just kept convincing myself it was going to get much worse and that I could handle this.
She urged me to get to the hospital. I called your dad home from work and she got busy making him two tuna fish sandwiches and some snacks for the night ahead. I called Cynthia back and asked her to meet us at the hopsital in half an hour. I told her my contractions were close and strong but that I was feeling good. I still wasn’t sure this was it. I told her we would probably get sent home.
10pm Dad and I got in the car and drove the long, dark, pothole ridden back roads to the hospital. It felt like the longest car ride of my life. It was impossible to sit. I was getting angry ebing strapped into this tiny car unable to move, practically standing on the front seat fearing every bump in the road. We parked the car and in the short walk to the hospital doors the contractions stopped in me in my tracks twice. Cynthia took one look at me and said ‘Oh there is no way you are being sent home. This baby is coming tonight!”
We walked up to the desk and told them I was Nina’s patient. They told me Nina wanted to have me checked before she came in. They asked if I wanted a wheelchair and I said there was no way I was going to sit back in a chair after that car ride. We laughed and joked and they brought me into a room. The nurse checked me and was shocked that I was 8 1/2 centimeters. She rushed out to call the midwife and Cynthia reassured me that I was doing great.
By the time Nina came I was 9 centimeters and my water had not broken yet. She told me there was no need to break it and that having the bag intact was likely keeping the pain more manageable. She said I was doing great and she was going to let me keep doing what I was doing. The pain was increasing and I decided to try to get in the shower. The idea of nice warm water on my lower back seemed heavenly but we could not get the water to warm and my shower left me shivering and tense. I was feeling some urge to push but was not at 10 centimeters yet so they told me I probably wasn’t ready so I continued walking around the room.
Just before midnight I stood at the foot of the bed during a contraction and couldn’t help myself from pushing. All of a sudden there was a huge gush on the floor! It scared me and I looked at Cynthia totally unsure of what had happened and she told me my water had broken. The nurses hurried over placing pads on the floor around me to soak up the fluid. The midwife was called over to inspect and they noticed meconium in the fluid.
They had me go up on the bed to check me and I was 10 centimeters and just about ready to start pushing! Because of the meconium a new team of doctors was called in and I was hooked up to some machines to check your heart rate. Up until this point I was having a pretty free range labor. It was very difficult for me to be laying back now hooked up to machines with a room full of people watching me.
Things got pretty foggy for me after this point. My memory of the next few hours is partly my own account and partly the account of the experience told to me by your dad and Cynthia and the nurses.
I pushed hard for just about three hours. About 2 hours in I ruptured a blood vessel and was loosing a lot of blood. Your heart rate was dropping in and out and the room was filling with more and more people. There were times when EVERYONE in the room seemed scared. Most of the time I was somewhat oblivious, allowing my mind to drifting off to an other world so my body could do what it was meant to do. The room was a blur. I looked right past the worried faces focused only on getting you out. After hours of pushing I just screamed ‘Baby please come out!”
I remember feeling the midwife pressing down tightly on the ruptured vessel with every contraction trying to spare me from loosing more blood. I remember the doula holding my left hand standing at the top of the bed praying out load for both of us to be safe. I remember looking across the room at my blurred reflection bounding off of the shiny chrome paper towel holder that I was sure was a mirror placed there so I could see what was going on. I felt like I was in a dream, watching from above. Still completely unmedicated my own bodies natural anesthetic was kicking in. Maybe it was because I had lost so much blood. Maybe I was in shock or maybe this is just natures was of getting us through birth. I was oblivious of the fear and chaos around me.
Dad later told me it was bad. There were bloody rags pilling up all around my bed. He saw a look of panic come over the midwifes face as she called for the doctor. He became even more worried when they left the room to talk.
I remember fighting with the nurses as they read me the consent form for a c-section. I was still still pushing, living half in this world and half in the world above looking down. I was so angry that they were shoving this paper in my face as I was fighting for our lives. I remember scribbling a line across the paper and throwing the pen across the room and then everyone disappeared.
The nurse stayed by the monitor and told me not to push. I looked around and screamed that there was no way I could stop my body from pushing. By this point I was scared. I didn’t want a c section but I knew I couldn’t do this much longer. I was worried that by pushing, or not pushing, I would somehow make things worse for you but I also knew it was out of my control my body was doing what it wanted. Nina came back and told me to do whatever I had to. She told me they were calling anesthesia and I had 15 minutes to get you out or we would have to go to surgery.
I remember trying to get off the bed. I remember my IV falling out. I remember the nurse begging me to stay laying back as I rolled and wiggled ever so slightly back and forth on the bed. I remember consciously blocking everything out, collecting all of the energy I had left and telling myself over and over that I could do this. I kept pushing.
I turned to the right and anesthesia was standing in the doorway, blue scrubs with a mask and gloves. I told them I couldn’t do it this way and they would have to knock me out completely. Nina came over to check me one last time. She grabbed my leg and said”Listen Kerri you can do this! The baby has moved down and you are almost there! I think we should use the vacuum. I am going to get the doctor.”
I screamed and pushed harder and harder one right after another. The doctor came in and told me you were right there and I could do this on my own. I screamed at her and said get this vacuum, that I couldn’t do it on my own. Nina grabbed my hand and had me touch your head. You were right there. I was doing it.
With a few more pushes you were born.
They grabbed you and whisked you to the other side of the room for examination and again I felt numb, like I was watching someone elses life. You began to cry and the doctors said you looked great.
Your dad was torn between me and you and you, not know which way to turn or what to do. Cynthia looked at him and said “well aren’t you going to tell her what it is?”
“It’s a boy!” He said.
It’s a boy!
You were born at 2:59 am Sunday September 5, 2010, healthy and happy.
Within minutes you were snuggled up in my arms and the pain of labor quickly faded away. You nursed and cried and we slept very little. I got lots of stitched and a cheeseburger at 5 am. The next day our family all filtered in to meet you for the first time and within a day we went home to start our adventure together.
You forever changed my life little one. I miss you every minute of the day. I would go through all the pain a million times over to have you here with me again.
May is Brain Tumor Awareness month.
Since the success of the breast cancer campaigns, it seems as though every day, week, month is dedicated to some disease or disorder. Each cause fighting for their 15 minutes in the spotlight. Fighting for funding and research. Fighting for people to pay attention, to understand.
It can be a lot to keep up with and I have to wonder if all of this awareness is really getting through to anyone? Does it really making a difference?
I never thought much about it at all until, May (Brain Tumor Awareness month) 2011, when my own son was diagnosed with a brain tumor. May forever shifted from a time of celebration and renewal, of spring showers and flowers, from the most important and happiest anniversaries of my life (mothers day and My wedding anniversary), to the month my life changed forever. The memories of my perfect beach wedding have been forever replaced with memories of MRI’s and brain surgery. The spring sun will forever be clouded by the grey of Brain Tumor Awareness month. And that’s ok with me, because awareness matters!
To be aware is to have knowledge. And knowledge breeds power, and money and research which all lead to better treatment; cure.
I chose to enter Kai into research studies right from diagnosis. We all know that the answers for cancer are still few and far between and I felt if we were going to be a part of this world, we might as well try to help the cause for everyone.
We have been a part of many important pediatric cancer fundraising efforts over the years, as we all know pediatric cancers get grossly underfunded so the thought of donating Kai’s tumor should he die was always in my mind.
In September when I took Kai off chemo I made sure his team knew my intentions. If Kai does not survive I want his tumor to go to research; for Lexie, and Hailey, and Chris, and Addie, Dylan, Yan, Alexa, Sam, Mackenzie, Sage, Grace, Colin, Adam, Tommy, Alex, and the countless other children and families fighting this fight. I have said it before but I will say it again, brain tumor world is a family. We celebrate together, we mourn together and we go on fighting for eachothers kids even when ours don’t survive. THAT is awareness. That is knowledge and power and hope.
Kai’s tumor was special. Not in a good way, but it was different and I knew that from day one, and I knew it would be important to find out why.
13 hours after Kai’s tumor took his life, Children’s hospital/Dana Farber removed his brain and spine for research.
Monday I was able to go back to Dana Farber and meet with his team for the report.
They told me it could take up to six months to get the report back and I will admit I was counting the days. I was anxious to go back. I was anxious to hear what they would tell me, why his tumor was different. I was anxious to hear what future projects his tumor could help. In all my anticipation, I also became anxious that they would find nothing relevant at all…
Monday morning my mom and I drove into Boston, as we had hundreds of times over the past few years. Along the way we picked up Ashley and Joe (our personal medical interpreters and psychologist <3)
We drove in circles deep underground through the Dana Farber parking lot. We took the elevator up and waited.
Kai’s team, Dr. K, His NP and psychologist were all there. We hugged. We sat and we listened. Dr. K has a unique and beautiful way of describing these impossibly devastating situations. He is thorough and clear. He does not dumb things down. He emphasizes the science, yet he somehow remains warm and heartfelt and caring. He works tirelessly for our kids and I am so thankful we took the time to explain this report to us.
Neuropathology Final Diagnosis:
Pediatric Brain (appropriate for 26 months of age)
RECCURENT/RESIDUAL DIFFUSE ASTROCYTOMA WHO GRADE II, IDH-1 (R132H) NEGATIVE WITH ATYPICAL FEATURES.
Tumor growth is unusually extensive involving multiple lobes and regions (gliomatosis ceribri pattern).
Tumor extensively involves third ventricle region, optic nerves, chaism, and tracts, bilateral thalami, bilateral basal ganglia, and the entire brainstem.
Leptomeningeal spread is extensive alone the optic nerve, ventral diencephalon, midbrain, pons and focally in the medulla with encasement of structures.
Tumor has similar appearance to prior biopsy.
Possible uncal herniation/compression, bilateral, due to diffuse tumor growth.
They spent over an hour going through what each of these findings mean. It was interesting and heartbreaking and in some way a bit reassuring. There is now NO question that I did do the right thing letting Kai go. I have nothing to second guess myself on, his tumor was everywhere and taking over ALL of his brain function. His tumor was strong and unphased by the chemo. He never really had a chance.
Kai’s tumor infiltrated every part of his brain. It was growing on every membrane, in ever fold. There were parts of his brain that were completely taken over and only tumor tissue was left behind. His tumor was smart. It grew in two different ways: it had a diffuse seeding as well as a tentacle spread. His tumor did in fact encompass his entire brain stem, mid brain and optic tracts –all of the places where regulatory body function occurs. His tumor did not have the BRAF mutation, which they have discovered appears in 90% of these types of tumors.
It’s so hard to think his entire brain was being taken over like that, it’s the kind of thing zombie movies are made of, but its also pretty amazing to think of how strong he was despite all he was fighting against. My poor little baby. How can this possibly happen. It’s just not fair. He fought so hard and never had a chance.
The only comfort we have now is that his special, strong, stubborn, smart tumor will be torn apart by science and research revealing something that will one day help the next kid.
I will never know for sure what comes of his tumor, but when Dr. K explained that the current advancements being made are coming from 100 banked pediatric tumors like Kai’s, I realized just how important his tumor is. 100 tumors are changing protocols. 100 tumors!
While we will not be able to specifically track his tumor, I will be updated on advancement made from the projects his tumor is involved in. Projects developed by Dr.K and brain tumor research around the world. Projects funded by parents from the PGLA Foundation. His tumor will travel to Germany -who is currently investing the most money in the world for pediatric brain tumor research. Doctors from Boston, Philly and even China will work with his tumor. They are surrently mapping his genome and will spend the next few years searching for the next mutation (like BRAF) that will help find new treatments for the special tumors like Kai’s. His tumor will make a difference.
None of this would be happening without awareness. None of this would be happening without the dedication of families and doctors.
According to Dr. Mark Kieran, Director Pediatric Neuro-Oncology at Dana-Farber Cancer Institute, Boston,
“Dramatic advances in our capacity to diagnose, treat, and prevent cancers have brought us to a moment when scientific discovery and technology have converged to turn the tide in our fight against these diseases. YET, even with medicine’s many advances, low-grade astrocytomas remain largely under researched and under funded, with treatments unchanged for 25 years. Little is know about low-grade gliomas (LGG) as attention and funding focused on these types of tumors has lagged behind that of high-grade gliomas. Without funding, there is no research. Without research, there is little hope for children diagnosed with PLGA.”
I would like to add to that, without donated tissue to study this research will not advance.
At the end of our meeting I thanked them for the care they gave us during treatment. I thanked them for their dedication as practitioners, researchers, caregivers. I thanked them for the research. And they thanked me for Kai’s tumor.
‘Kai’s life will make a difference. His tumor will one day help others’
It’ a small consolation, but it was all I wanted to hear.
So the next time you see a facebook post or a sign or an articel about awareness for cancer, or autism, or epilepsy, please take a moment and think about the thousands of families who will loose their children. Think of the doctors and nurses working tirelessly to find cures. Think of the children who fight with a smile on their faces, despite the relentless diseases taking over their bodies.
I know we can’t save the world and for me awareness is not all about a cure.
Awareness is about taking that moment to put yourself in someone else’s shoes.
Awareness is about improving quality of life.
Awareness is about uniting to fight for ALL of our kids, sick and healthy.
Awareness is acceptance of those who are different from you.
Awareness builds a Village.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
This last month has been really hard on me. I had the longest stretch of the hardest days that I have experienced since Kai died. I’m not exactly sure why, but I have been told that many parents find month 4 to be especially difficult. The numbness starts to fade and the pain really sinks in. Life is going on around you and it all becomes more real. He is not coming back. This is my life now…
A lot has happened this month adding to my eventual mini breakdown.
My 31st birthday was at the end of March and as much as I tried to ignore it there was no denying the facts: I am now 31 in a failing marriage and my baby is dead. I have no income. Not exactly where I thought I’d be at 31 and certainly not much to celebrate. I held it together for a few weeks, but as soon as the weather started to change-as soon as a few things started going right in my life, I began to fall apart.
I remember feeling so thankful that it was winter when Kai died. It felt fitting and comforting to have the world around me as cold and lifeless as I felt. I was thankful to hide behind the snowstorms and sweaters, allowing the cold air to temporarily freeze my heart and my brain. It was a long, numbing winter and that was good.
But by the end of March, like most new englanders I was becoming restless- ready for spring.
It started off slow, as it always does. The days started to get a little longer and the sun started feeling a little warmer. We had a few of those early spring days where we could open the windows and air the house out. Days where it was enjoyable to walk the dog again! It was nice driving around with sunglasses on and the windows rolled down, smelling the fresh air…and for a moment I felt good. I felt hopeful and ready for the things to come.
I came home from school that day and walked into Kai’s room without a second thought to open the sliding glass door… and then it hit me.
The fresh air the warm bright sun it all brought me right back to those summer days, not so long ago, where I would put Kai down for a nap and open the slider to let the air in for him. Let him hear the leaves rustling and the birds chirping. I would sit there in his room, out of his sight, wondering if he felt the breeze. Wondering if he could see the light flickering on the ceiling as his dark brown curtains blew gently in the wind. I would sit there taking in the summer air listening to him breath, wondering if he would ever enjoy the simple things in life. Wondering if he would ever be healthy and happy.
And now here I was alone, standing there in the sunny doorway and all I wanted was to hear him breath again. I felt so ready for spring just a few days before but now standing in his room it was hard to open that door, to let the light in.
I would give anything to go back to the numbness of winter, but the flood gates of spring have opened and it took me a few weeks to put myself back together.
I spent a good amount of time on the couch. I couldn’t sleep but I couldn’t do much of anything but just sit there. I cried a lot. I worried a lot. I felt sorry for myself and my life. I felt scared that I would never to enjoy the beauties of the world again.
As they say, things tend to get worse before they get better. I tend to think they are right.
Last week Mark and I filled for divorce.
It has been a long time coming. It is something we both tried to avoid, but after Kai neither of us have much fight left in us. It was time. We had prepared. We filled out papers and got things notarized and split our accounts, and I felt ready. I went down to the courthouse alone and submitted our paperwork. It was easy. Took about 20 minutes. No one asked any questions. It was just paperwork.
I left the courthouse, turned the corner and cried the whole way back to my car. After all we have been through the past few years I wasn’t expecting to have such a reaction to this at this point, but it hurt. It was hard and scary and really really sad.
On my way home from the courthouse I got a call from Dana Farber, Kai’s autopsy report was ready.
I called back and scheduled the appointment. I called out of school the next day and curled back up on the couch for another week….
I have been working on several posts for the past few weeks. Many of them start off, ‘ I can’t believe it has been almost 2 weeks…1 month…almost 2 months since my last post….’
As I sit down tonight for another attempt I realized it has been exactly 4 months since Kai died. 4 months, almost to the minute as I type this…
So much has happened that I don’t know where to begin. I’v sat down many times to write but I have been having a hard time getting myself to put together a string of thoughts worth sharing.
Every time I go to write I find myself spending hours reading back through the previous posts. I never re-read these posts when Kai was alive, but now it’s all I have.
The more time goes by the more I hold onto those words and experiences of the days when he was here. I get sucked in as if I am reading someone else’s story, someone else’s life. It’s surreal.
I read backwards one post after another trying to catch up with the days he was still an active character. Trying to catch up to the days we spent together, to the pictures of him smiling outside the hospital walls. Trying to catch up to the days when I was living this life with Kai.
I read it back over and over- holding on to the good days, trying to reassure myself of the decisions I made, searching to find the answers about what’s next.
I’ve rarely questioned my decisions in Kai’s life, knowing I researched and agonized and fought for him everyday, but I will admit lately –out of desperate longing to have him back- I have doubted myself in ways I never thought I would. In ways that all of us bereaved cancer parents do.
In my determined quest to always focus on his quality of life, did I give up to easily? Should I have pushed harder, treated longer…
My friends who tried everything and anything have the opposite doubts “should we have let him go sooner? Kept him from the pain?” And my friends whose children went suddenly question if there was something they missed…
No matter which choices we make or which way they go we will all, at some point, question these things because no matter what happened it should not have ended this way.
Looking around all I have left of him are these posts and books of happy pictures. Pictures of him playing and smiling and eating and doing things. Pictures of him contently sleeping in my arms -needing nothing more in the world.
His room is piled with his things. His crib it still up. His cloths are still in his dresser. I still have diapers and medicine and therapy toys everywhere. I go into his room often just to look around, but the chaos is overwhelming and then the photos suck me in. I look at the pictures and I see this smiling happy boy and it is so hard to remember how sick he was. Its hard to remember the pain I was trying to save him from by letting him go. In the pictures he doesn’t look sick or in pain and I can’t help but question my decisions.
As I look at that little smile, wispy blond hair and big brown eyes, I have to remind myself that these images are only one small fraction of his life. I hate that instead of enjoying these sweet photos and memories, the only thing I have left, I have to sit there and convince myself that behind those smiles was pain. I have to remind myself that he was dying the whole time. That he was suffering even in the sweetest moments. Remembering how hard his life was is the only way I can convince myself that I did the right thing.
In my heart I know that Kai and I spent wonderful quality time together but if my head allows me to remember those moments I don’t know how I would be able to face each day without him at least right now. So it has been 4 months since Kai died and I cannot let myself hear his laugh. I can not feel his hair or smell his skin. It has been four months and I get up and out of bed everyday. I work to make life better for those around me. I go to school and visit friends. But really everyday I wake up and float through life numb.
It has been exactly 4 months since Kai died. 4 months ago at this exact moment I held him as his body gave in, his suffering stopped and I became the mother of a baby who died of cancer. How could I possibly be anything but numb…