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.
Awareness=Research=Hope
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.
The report:
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.
Diffuse gliosis.
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….
{the view from Kai’s room}
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…
Recovery from surgery has been going well. I am still sore but managed to get myself to school and to our monthly Kai’s Village meet up on Thursday. It was a long day, but I did it!
School was good. I don’t think I missed to much on my first day. It was nice to meet my classmates and get a feel for how the year is going to be. Busy I think!
I had two classes,Business Management and Anatomy and Physiology. Both teachers were great and we spent time in each class talking about what got us interested in massage and what we think our focus might be. For me this was a welcomed, open invitation to talk about Kai -after all HE is the reason I am doing all of this.
In my morning class our teacher was talking about different internship sights and he mentioned Why Me?/Sherry’s House. I took the opportunity to tell the class that we are a Why Me family. That I started going there last year after my son was diagnosed with an inoperable brain tumor, and that I had been given a massage by a Bancroft student who was there on his internship!
I’m not sure many people really understood what I was saying, what it really means to be Why Me family. Or maybe people just din’t know what to say. But at least it was out there.
I go to Sherry’s House as a parent of a child who had pediatric cancer. I HAD a baby with a brain tumor.
Later in the class we went around the room talking about different specialties within massage and what specialties we each are interested in. This was my chance to clarify. I talked about my interest in working with people undergoing treatment for cancer and children with complex medical needs. I talked about how beneficial integrative therapies were to Kai in his treatment and to me as his mom. I talked about Lucy’s Love Bus and early intervention and Camp Sunshine and Whole in the Wall and Perkins. I talked about the benefits of massage in palliative and hospice care, a sect of this that I am especially interested in since Kai’s passing. I told them that Kai died in November.
It was a long strange day. Physically tender from surgery and emotionally vulnerable -hiding behind the lingering post-op haze which protected me from fully feeling my first real day living a life that Kai does not live in.
At lunch a few of my classmates were brave enough to ask more about Kai and our experience. I really appreciated that and talking with them one on one made it that much easier for me to explain it all again to the next teacher in our afternoon class. The second time I was more concise and to the point. I was able to focus our story as it relates to my goals as a Massage Therapist. It was one small step into normal life conversation and it was ok.
Kai will be the reason I do most things in my life from this point forward. His life story will always be a defining description of who I am. It was so much easier when he was here by my side. I didn’t have to explain so much or reach so far or reign myself in. It was all right there. The wheel chair and the feeding tube. His big brown eyes and blond hair resting on my tired shoulder. It’s hard to walk in a world where people can’t just see it. Where I don’t look like a mom, a caregiver, a nurse, a therapist.
At times I do ok and at other times I welcome the protective cushion of the fog that often surrounds me.
By the end of the day I kind of felt like a walking disaster, tired and groggy, excited and exhausted all at the same time. On my drive home I couldn’t help but think back at what an outlandish story I have to tell these days. How crazy I must have seemed limping around three days post-op, talking about my dead baby and cancer all day.
That night we had our monthly meet up for Kai’s Village. This month we had a Valentines Pasta Diner with our favorite entertainer Mr. Kim. The night was a success. The kids had a blast with Mr. Kim (as always) and I was able to visit with friends and family.
My life is often hectic and sometimes sad and may even sound a bit crazy at times, but I wouldn’t trade it for anything. Everyday I am thankful for the people and experiences that Kai continues to bring into my life. Everyday I am thankful that I now live with a purpose that I never knew I could have. Everyday I am thankful for knowing myself so much better, limping, tired, foggy, hazy, crazy, happy, smiling, determined, or otherwise…because of Kai.
Mr.Kim entertaining everyone!
& Hand made Valentines to be sent to the kids at UMass <3
A few months back I started having some stomach issues. Sometimes nausea sometimes a tightening in my chest that on a bad day traveled to my back. One night at the hospital with Kai I felt so awful I thought I had the flu. I brushed it off a while figuring it was just stress. As the months went on It seemed to be happening more frequently. With the help of google and a friend of mine (who needs doctors right!?!) I suspected it may be my gallbladder.
The first night of our trip to Canada I ended up in the ER with a pretty bad attack (apparently a gallbladder full of stones does not appreciate pizza and beer!) Ashley drove me at 3am through a snow storm to an ER in Vermont. It was a quiet little community hospital not at all what i am used to Both the doctor and male nurse had large grey Vermont beards. They did some blood work they too suspect gallstones. The doc gave me some pain meds and told me to get an ultrasound when we got back from vacation. In the meantime, stay away from fatty foods, cheese and alcohol. Great way to start a vacation!!
A few weeks ago i had the ultrasound and it was confirmed that my gallbladder was ‘full of stones’ and looked like a wrinkled ‘leather shoe’. I asked to see the ultrasound and the surgeon obliged. I joked ‘can’t I just do a cleanse?’ To which he laughed and said that this organ has been non functioning for about a decade. Then I asked if I could see the organ after my surgery. He said they send it to pathology, but he could give me some of the stones if I would like.
I just wanted to check them out, I don’t need to take them home!
Surgery was scheduled for, you guessed it, Monday feb 4th -my first day of massage school…
I have never had surgery before, no stitches or ER visits for myself, ever. In fact I hadn’t even been to the doctors for myself since Kai was born. Naturally I was not too excited about having surgery, but every time I was nervous all I could think of was how much Kai went through. How brave and strong he was. How much of this crazy medical crap he endured in such a short little life. He rarely cried and never complained. Thinking of his strength calmed my fears, hoping maybe he would visit me in my dreams while I was under anesthesia.
Surgery was early monday morning. I went into it pretty calm convincing myself if Kai could do it I could do it. I barely remember being wheeled I to the operating room before falling asleep from the medicine.
Waking up was a little more difficult.
I woke up crying for Kai. The nurse came over to check on me and told me it was ok, that a lot of people cry when coming out of anesthesia. She tried to console me but I just kept crying and asking her to bring me Kai’s blanket. I brought his blanket with me, the one he was wrapped in when he died, but my mom had it in the waiting room. The nurse was confused and asked me who Kai was. I told her he was my baby and he had been through so much and that he died of a brain tumor. She held my hand for a minute and then walked away. I think she was trying to find the blanket but I felt so alone when she left.
All of my hospital experience has been at children’s with kai. the nurses are always there to talk to me and explain things. It was strange and scary to be on the other side. The patient, scared and vulnerable.
I was so hoping to visit Kai in my dreams, but never considered that I would come to, crying for him like that. There was no hiding it, the pain and sadness of loosing Kai just came out instinctually…I didn’t have a choice.
Once they wheeled me back to my room mom and Ashley were there with all of my things, including Kai’s blanket.
We stayed a few hours in recovery, and then went home.
Ever little pain I feel I can’t help but think about all of these kids like Kai, who endure so much. I just can’t help but think how brave and strong they all are. How unfair it is what we put them through trying to make them better. And how their pain is forever imbedded in the subconscious of all their moms and dads who watch them go through it.
Being put under anesthesia, cut open and pumped full of drugs can really mess with you. I just don’t know how these kids do it week after week, year after year…
I have done a lot of reflecting back lately on my life with Kai. The things we did, the choices I made. All along the way letting go of little pieces, bit-by-bit, of what I though life would be like. Becoming a chemo mom you learn to let go of a lot. Part of letting go is having reasonable expectations, which is often no expectation at all. You learn to be ready for anything at any time. It took a while to adjust to this way of living. In my life before Kai I rarely said no to anything. I would push myself to fit everything in and keep everyone happy. I would have anxiety about missing out on things if I did say no. Having a baby with complex medical issues and special needs changes all of that.
I know all parents live this way to some extent. We all have to expect the unexpected and be ready to change course at the first sign of the sniffles or a melt down approaching. But somewhere along the way, being a chemo mom turns from the typical ability to adjust into in complete surrender of life, as you know it.
You start to give up on the basic structures and routines that we are taught our whole lives to live by. Making plans becomes impossible and heart breaking so you learn to just give up and give in and enjoy the moment.
I know I have mentioned this feeling before, this learned practice of flying by the seat of our pants. This inherited inability to commit to anything any father away than tomorrow. It is a coping mechanism. A way to take control by releasing control altogether, and it works!
Naturally one would think that now that Kai is gone I could go back to living life by the book. Making plans again, committing to my future, answering the phone or an email…but for some reason it hasn’t been that easy.
I am used to living in this little world Kai created for me. Taking care of things on my own. Being accountable to know one but him and I. Having a child with disabilities or life threatening illness can send you into a world of isolation no matter how many people you have around supporting and loving you.
Loosing a child is the same.
To my surprise I have found that this practice of non-commitment, living one step removed from the rest of the world, that urge to turn everything else off and run has only gotten stronger since Kai died.
When people ask to make plans for next week I am filled with anxiety. Even when I know it is something I want to do I will not agree to it, out loud, until the day before. Trying to plan any kind of future for myself is paralyzing. Sometimes even answering a phone call can induce heart palpitations. I find myself snapping at my loved ones when they ask how I am doing or if I would like to meet up sometime soon. It is too much to bare to even contemplate the question. I immediately go on the attack, causing a distraction looking for a way out. Avoiding. I have been trying the past few months to figure this all out. Why is this still such an issue for me when I now have nothing but time, nowhere to be, and nothing to loose? Why do I physically recoil at the thought of having to make a decision about ANYTHING!?!?
Sometime last year, when Kai seemed fairly stable, I started looking into going back to school. After working with so many wonderful integrative therapists for Kai’s care I decided to apply to massage school. I was all set to start this past September but when it came time to sign the papers I just couldn’t do it. By that time Kai was not doing well and I knew I would never be able to spend that time away from him.
As Kai was dying in the hospital I began to think about what I would do with my life once he was gone. How would I ever find meaning in work again? How would I ever relate to other people after this? I once again thought of massage school and imagined being able to help kids like Kai.
After he passed I thought I should start school as soon as possible. The next session starts February which seemed like a reasonably amount of time, but as the weeks went on I hesitated. Fear of commitment… I eventually resubmitted my application. I emailed the school with the update on Kai. I received my acceptance packet in the mail, but never signed the paper to start the program. I though about it every day for weeks, but still couldn’t sign the paper. This unreasonable fear of commitment was holding me back.
Last week I was telling a good friend of mine (who also happens to be a very good psychologist) about my plans for school and my inability to fully commit. She looked at me and smiled and said that of course it is hard to commit. Committing to something new in my life is also admitting that my life is different now. That Kai is gone. By making a decision like this I am committing to moving on to a life that Kai does not live in.
Of course! In that one moment it all made sense. I let go of the fear and more importantly I let go of expecting myself to be able to make decisions like this because how could I ever fully commit to a life without Kai.
Monday morning I went to school and signed the papers. I start next week, two days a week for one year. By the end I hope to provide relief and restoration to kids like Kai who are fighting disability and illness. I hope to work with some of the people who worked with us. I hope to incorporate these skills into the work we are doing with Kai’s Village.
I committed to continuing to build a life that allows Kai to guide me in the work I do, everyday.
Last week Kai’s Village, Andrea and I, went to Umass to talk with the child life specialists about how we can get connected and help the families there. The Child Life director was very happy to meet with us and was even more excited when I told him how important it is to me to not just serve cancer kids. I explained to him that Kai had many disabilities and I know first hand how difficult any one of these challenges can be on a family. He seemed so genuinely happy to hear our story. He listened to our story and agreed that many families of kids fighting chronic or life threatening illness do not always get the support from their communities that they need. I know we can not do it all, but we can do something and talking with him really reassured me that we are on the right path.
After our meeting we were given permission to join Mr. Kim (the music therapist) and visit some kids on the floor. Mr. Kim volunteers his time every week to entertain the kids with his music, magic tricks and stories. He does such an amazing job and the kids just LOVE him!
I didn’t put much thought into this visit to the hospital. I have been trying to prepare myself for visiting the Jimmy Fund/children, I know that will be hard, but umass wasn’t our hospital. Kai didn’t die here. We hadn’t even been on the floor here in well over a year. This one will be easy, I thought….but there I was walking off that elevator on the fifth floor and a sudden rush of butterflies flew into my stomach. I could feel a slight flush come over my face as we walked past the waiting room where I so vividly remember calling my family and friends, all those months ago – calling to tell them my baby had a brain tumor. As we walked down the hall, out of the corner of my eye I saw one of Kai’s doctors. He did not see me and probably would not have recognized me even if he had, but I recognized him. I remembered how everyone always questioned him, because he looked so young. I remembered how much time and care he took with Kai. I remembered watching the young female interns vying for his attention as if he were a real life McSteamy. I remember seeing them walking outside, joking laughing in the crisp spring air.
It all came flooding back to me in an instant. This is where Kai was diagnosed. This is where I first watched my baby be put to sleep. This is where I became the mother of a child with a brain tumor.
When Kai was alive I felt a sense of calm in the hall of a hospital. We were safe there. Someone else was in charge. I could breath. But now that he’s gone its different. No one can save him now. I no longer have that parent badge that tells people I belong. I am just a visitor now and it felt weird.
As we walked down the hall with Mr. Kim he told us one of our Village families was inpatient. I learned of this family through a friend and the mom and I had talked a bit on Facebook. Her son is being treated for leukemia. She did not know we were coming and I was not expecting to see her, but after meeting I know Kai brought us together that day.
Things with Kais Village have been hectic and it is sometimes hard for me to keep up. I spend most days in meetings talking about everything from logo design, to 5k fundraisers to office space. It has been great to keep busy but sometimes, in n this midst of trying to help everyone else I forget to take time to heal myself.
Spending time with this family, facing the hospital, I was able to do both.
It was amazing to watch her boy run around his little hospital room, tethered to a poll filled with bags of fluorescent chemotherapy drugs. He danced around, running from one side of the room to the other, while carefully (well as carefully as any 5 year old can be) pulling that poll behind him like it was instinct. He played games and told stories and sang songs, without a care in the world. It takes so little to lift a child’s spirit, they are so open most of the time.
As the boy played with Mr. Kim, I talked to mom about their journey. We did the typical cancer small talk. We went over diagnosis and treatment, and how much time they’v got left -the questions anyone would ask. I listened for the obligatory stock responses of a chemo mom at this point in the journey. She told me how well he is tolerating the treatment and how they only have four more days inpatient and then they go home to normal life for a few weeks. She tried to put her best foot forward and speak with confidence and determination, as we all do when playing this game. It is all we can do. To convince others is to convince ourselves, this will all be over soon, and everything will be fine.
But then I started in on the I’m a chemo mom too kinds of questions. I asked about the rest of her family, and what kind of support they are getting. I asked how her other child is doing and how her extended family and friends are reacting to it all. I asked how she is holding up with the long hospital stays, if she is getting any sleep or real food. I asked her when’s the last time she took a breath of fresh outside air or slept in a real bed. I asked her the questions only another chemo mom would know to ask, and somewhere along the way she realized I wasn’t just some stopper by. She realized I was Kai’s mom.
Her eyes began to well and in an instant I realized that in this world, I am her worst nightmare. The side of this we all silently fear, the potential death we ignore as we go to the ends of the earth holding onto hope that ours will be the one who makes it out ok. There I was standing in front of her forcing her to face this possibility. Forcing me to face my own new reality.
For a second I felt guilty for pushing Kai’s death on her, I know what a struggle it can be to hold onto hope. I know there are those who don’t ever want to face the other side, not even for a second. I did my best to show her that Kai is not her boy. That Kai’s life was different and that her son was running and singing and playing, and was going to be fine.
The second she realized I was Kai’s mom, she looked into my eyes, grabbed my hand, and from one chemo mom to another and without saying a word, we felt each others pain. She saw in my eyes that even though Kai has lost his battle, this fight is not over for me. We all fight for all of our kids. When one is doing well we all celebrate and when one does not make it we all mourn. Without saying a word we said it all. And then we laughed and cried and held onto each other in the cold fluorescent light of a hospital bathroom, careful to hide our tears and fears from her little boy happily playing on the other side of the cinderblock wall.
This is what’s its all about. It felt so good to listen and support her. It felt good to talk of Kai and our journey. That our tragic loss can still be connected to hope, by just being there. I felt privileged that this is how I get to spend my days right now. All of a sudden all of the work we are doing, the late nights and long meetings, the fundraising and networking, it all came together in this one moment. I needed this mom at this moment. I needed this visit. I needed to go into that hospital and talk about Kai and watch this beautiful boy laughing and playing. It is days like this I feel Kai working right beside me, bringing me to the right place at the right time to help me help others, and to help me heal myself.
