Awareness Matters

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.”

http://www.fightplga.org

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.”

BTAWARENESS copy

28 thoughts on “Awareness Matters

  1. Kai’s life DID and HAS made a difference. I became aware of kids fighting brain cancer because my friend’s cousin, Ty, was 2.5 when he was diagnosed with a brain tumor. He fought hard for 2.5 yrs – losing his battle shortly after his 5th birthday. Because of Ty my eyes were opened to so many other kids battling. That’s how I came to know about Kai and was so sad when he lost his fight shortly after Ty. For every kid I learn that is battling I have joined in the fight. For every kid I learn that has lost their battle makes me want to work even harder for change! Thank you for sharing Kai’s tumor for research. He HAS made a difference in people’s lives and he will continue to make a difference. RIP Kai. Soldier on momma. I’ll be following Kai’s Village and supporting your efforts however I can.

  2. Kai will never be forgotten. His life had a huge impact on others and will continue to impact others.
    Sending love and hugs,
    MP

  3. Kerri, Kai was a special and strong little guy! It is amazing to me to think of how much his little body was dealing with and still he could give. A little smile once in a while. Truly amazing. You are an incredible Mom. Kai’s spirit will always be with us. He is missed. Love aunt Margie

  4. Kerri, you are beyond courageous in every way. To let Kai go and follow your intuition against what so many of us would do with the tremendous fear of losing our babies. You are an incredible mom. To facilitate his end of life so he was healthy, happy, and held in the arms of family and friends to the end takes the utmost courage as a mom because it goes against so much of the medicalized end of life care. And then how do we accept this for our children? I just have so much love for you and am inspired by the mom you are. Thank you also for staying in the fight. When so much failed Kai you have persevered to donate Kai’s brain and spine, with the hope that lives will be saved. This too is overwhelmingly courageous and, as a mom of a child who will stand to benefit from this research, I thank you from the bottom of my heart for giving what must be so hard to give. Sending so much love, always.

  5. Kerri,
    I am forever grateful for you and your blog. I wish there was words to express to you how deeply your beautiful story
    Has touched my heart and changed my life. God Bless<3

  6. You and Kai have already made a difference to so many! You are an amazing woman, Kerri! It’s no wonder your little boy was a fighter! I have no doubt that you both will continue to help others! And though it’s a small comfort considering all you’ve lost, the good things you are doing may make all the difference someday! Thank you for sharing your life with us so candidly!
    {hugs}
    Regan from Worcester

  7. Thank you for your last two entries. I have read them aloud to my mother who is legally blind but so interested in hearing how you are doing after me telling her about you and Kai. As always, your posts were poignant, well written and so touching. Kai can’t and won’t be forgotten, not with you as his Mom.
    I am so sorry to read about the breakup of your marriage. We never know what we will face in a marriage and yours was strained beyond what many can handle. Forgive your self and Mark.

  8. Kerri,

    I’m from Brasil and I’ve been reading your post for a long time. My daughter has a inoperable brain tumor in the brainstem but she is healthy and we found out by accident. It’s been one year and the tumor is stable, we are watching and waiting. I’d like to have your courageous to fight this disease. Kai made the difference certainly.
    Thankyou,
    Raquel

  9. Kerri,
    Thank you for sharing all of that and for sharing Kai with us. He will and is already making a difference: we have been discussing whether or not to take Hail off chemo, but don’t want to do that unless we have a back-up protocol for if/when her tumor starts growing. One of the things we wanted to know is what mutations her tumor has. A sample of her tumor was used in the original BRAF study, so Dr. K went back and found Hailey’s sample. She does not have that mutation (like Kai). The sample of Hail’s tumor that is left is very small. We are thinking that it may be best to keep her on the chemo until research can catch up and give us better ways of detecting what mutations Hail’s tumor has or when a better protocol is found. Kai is going to help that day come sooner! I hate that he is gone and think about him so much, but know that he continues to bring hope to us!

    Sending you hugs and so much love,
    Lisa

  10. Love you so very much!!! Your beautiful boy is helping in such an important way…Lexie does not have the BRAF mutation or duplication either, but multiple chromosome 7’s, the chrosomosome that the tumor uses to grow…Go figure. Usually only seen in high grade adult tumors. Also Gr. II…..so much alike and yet so different…We have so much to learn…
    Hugs to you…Hope to see you and hope to hug you in person soon !!!
    love, alice, emily, lexie and Max

  11. that is such an incredible story of inspiration and courage.

    on sunday, this sunday my community here in canada is holding a spring sprint to raise funds for the brain tumour foundation of canada. i am a survivor of a non-malignant pituitary gland tumour, which was discovered when i was about 10 wks pregnant. my tumour complicated my pregnancy in ways that was super scary and my son was born while i was totally out under. my husband was not allowed in the operating room, so my wee guy was born alone. (you can read more on my blog)

    no brain tumour is simple and the same tumour presents so differently in each person.

    kai’s tumour is going to help other’s living with brain tumours. i will think of you and him when i walk with my kids on sunday. when i walk with my team MAMA’S AGAINST TUMOURS, because simply put brain tumours suck. they are terrible, scary things.

    all the best.
    xo

  12. Reading your stories allows me to stand in your shoes for just 5 minutes . . . .see what you see.. .. . . and it always makes me cry and feel so sorry for you. . . . but you have turned Kai’s legacy into a story of strength and overcoming. . . . and you are an inspiration to me, Kerri. Thank you for writing; I need to be made aware.

  13. Thank you to you and Kai for contributing materially to a growing body of research. Someday that gift will help ensure no other mama has to face what you’re facing. Thank you for the view from Kai’s room, too. You are in my thoughts.

  14. You are an amazing mom. Kia was an amazing boy. Together, I believe, you have made more of a difference than you will ever know. Thank you for sharing your baby boy in life and in death. Thank you for continuing to share your journey. Through awareness, you both have forever changed my life in so many ways for the better. ♡

  15. Pingback: May is Brain Tumor Month | Gagas and Wayways

  16. Kerri,

    You are an amazing and special person. When I think or speak of you, my heart fills with admiration for your honesty, courage and strength. The way you express your thoughts and feelings are a gift to others. Thank you for sharing this journey with us. You and Kai have been and continue to be a gift to all of us.
    With love and warmest wishes always…

    “Now I know in part: but then shall I know fully” 1 Cor. 13:12b

  17. Dear Keri,
    I’ve wanted to comment on this post but I am just so overcome with emotion that even typing this is hard. Thank you to Kai for helping others. Thank you for making others aware. I am forever changed for having “met” you, and in the 4 months since Kai passed and I learned of his fight, I can truly say I have changed. I am the mother of a healthy 2 year old boy. Now I am making better choices for both of us. I understand my priorities better. My decisions are clearer, the noise is gone. I’ve sought out help for my problems so that I can be a better mother. I am helping others now who suffer from cancer. Would you believe me if I told you this was because of you and Kai? Because it’s true. I very much want to attend the Road Race tomorrow but I’m so afraid that I will just cry the entire time thinking about how unfair the world is. I am still mourning for Kai. God bless him, and God bless you.
    Best,
    A Better Mom Because of You

  18. You are the Most incredible writer, person, and MOM. Thank you – for your blog and for keeping the awareness of what truly matters in the forefront. I am so sorry for all that you are continuing to go through. I think of you and Kai so often and pray that you can find some peace and comfort. You are truly an inspiration for us all….one brave mama!

  19. Kai’s life will always make such a huge difference on this world. I believe more so than you can even imagine. Hugs and prayers.

  20. Still thinking of you and Kai and hoping that you are doing well, Kerri. Love to you. Stay strong, time will help heal.

  21. I loved reading this , I wonder from time to time how you are doing and hoping things are getting a little easier and most of all found peace and comfort with yourself .I know Kai is playing with the Angels and watching over you ! God Bless You and Hope too here from you soon.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s