Unravel is a non-profit organization working to spread knowledge about the grim realities of pediatric cancer and the devastating impact from the lack of funding. They supply the information, tools and support to individuals and communities that want to help create change because, good people want to do good things but sometimes they need help getting started.
I was honored to get to be part of an amazing and inspiring conference. It was host by PBTF (pediatric brain tumor foundation). I was in the company of around 10 motivated foundation founders and 71 brain tumor researchers.
It was humbling to say the least, to be by far the least intelligent person in the room.. but also super educational – I even tried to figure out how to make that sentence sound smarter.. but thats the best I got-
We heard about immunotherapy and clinical trials. I was introduced to a few incredible researcher led programs, which was so invigorating to see them helping further another scientists work to be successful. It means one winner in the end. Kids fighting cancer.
One of these programs is organizing big data to strengthen others ability to run their investigations. And another program to help the JR researchers get money to get started and to further test others results for accuracy.
In the non profit track meetings, we talked about ways for us all to stay engaged and working together over the year. We discussed the problems we see plaguing pediatric cancer patient families… and what we as a community can do about that!
ok.. so thats about the best I can do with talking about the conference with my Unravel founder hat on.. It was well run and a true honor to be allowed to attend..
BUT- I am bursting at the seams to put my mom hat on and just share..
It was pretty remarkable.. sitting in the back of this room filled with researchers.. some of which we have partnered with.. Many I have just fangirled over and some that I had never had the pleasure of meeting.
And just being an observer of these people..these scientists.. in their element was eye opening.. I am used to talking with them at a table with me one on one or in a small group.. But being a fly on the wall of sorts allowed me to see them in a whole new light.
Ive always said my daughter died not for lack of ideas.. but a lack of money.
these days so full of hope and promise
sissy you were worth so much more than we gave you
But I learned its so much more than that. Because its not because a lack of passion or desire on behalf of the researchers either. . not by a long shot.
They fought with each other. I mean they really challenged each other and scrutinized each others ideas and processes.
They asked questions. And they fervently detailed what they were working on. They were honest about struggles and places that improvement is needed.
They genuinely cared to figure out ways to effectively find treatments for brain tumors. They were all working on slightly different aspects of this disease..
In the case of DIPG they realize that buying kids a few more progression few months is a gift.. but not enough. So while that is being accomplished.. working towards removing the now terminal prognosis is the real goal.
this was their version of dumbing it down
And though I did not get to spend much one on one time with many of these researchers.. I did somehow end up with the right one.
wait for it..
I met a fella from the NIH I adored! whaaaaaaaaaa?!?!?
oh wow. it was you.. maybe you and Mckenna up there.. you wanted me to meet him. you knew I needed to know
As he described his lab its “grass that feeds the science “. Basically his lab has the capability to support all the researchers that need it. It made me remember to look for the good even under the heaviest of rocks.
He openly struggled meeting me and some of the other bereaved parents that started their foundations.. But we were proud to put beautiful faces to the cell lines he and his team are working with.. I told him as we parted ways that he made it hard(ish) to hate the NIH.. he replied that hearing that I felt that way about NIH and ACS broke his heart .. and I gave him my honest reply.. Losing my daughter due to lack of funding broke mine.
But see.. I know he will go back and work with the same drive and determination I believe he always has.. And the same heart. Honestly. I believe he didn’t need more motivation or drive ..
The gift was mine. . now I know another person cares about my daughter.. I know another person is interacting with the last living pieces of her with gentle and loving hands..
And if I had gotten nothing else from this conference knowing that.. Putting a face and hands to that for me was priceless.
thank you sissy miss
At this conference..sitting back as Jennifers mom it .. it was what I wanted to see happening. ..
I want the people that have the capability to find the answer, to be really motivated to find it.
These pictures are still hard for me.. these images burned into my memory still of the time that the cancer was slowly stealing her.
I want them to have that healthy amount of ego to simply want to be right.. But enough to heart to care more about these kids than that. Our kids. The child that once was my living daughter. Its such a twisted catch 22… because once she was diagnosed.. it was already to late for my Jennifer.
This is what she needed… I bet it was happening then too.. but I assume that then it was also a lack of money holding them back.
As a friend to far too many kids recently diagnosed… its everything they need.
And its up to me to help these researchers… these yet to be diagnosed families get the funding they need to truly save these kids.
What I saw .. perhaps it was a feeling more than a particular word.
It is hope. It will lead to change. And that is a very very good thing.
I screw up with you guys. I know that. I have all these plans and thoughts in my heads of how I am going to do and be so much better. And I screw it up.
Lately its been because I have been scared. Its hard work to be sad. Its hard work to allow yourself to hurt. Big. Real Hurts.
Losing your sister is my biggest hurt. And I hope so much it always is. *make smart choices I need her to always be my biggest hurt*
But you will have your hurts. Big. Real hurts in your lives. So I hope you learn from me. I hope you learn what it means to be brave and strong. Its not what most people think.
Its allowing pain. Its dealing with it. Its embracing it. Its learning from it. And when you are ready its standing on it. .. instead of letting it stand on you.
I love all five of you. And it just makes me really sad one of you is missing.
But the truth is I love all 5 of you crazy kids.
but you four this is about you. This is about the absolute joy you bring to my life. I guess thats the part about losing Jennifer I don’t often share with you, I am able to feel that joy in a whole different way. Because I know what a gift your smile, your touch, your heartbeat is.
I don’t think I say thank you to any of you for that. For being you. For letting us all learn from each other. For mistakes and lessons learned together. For baking and jumping in puddles, For reading books and shooting baskets. For popcorn and movie dates on the couch.
For allowing me to be sad. And forgiving me for fighting to be sad because I am scared of it.
I love all five of you. And it just makes me really sad one of you is missing.
And that’s ok.
I am seriously so grateful to be your Mom. Even when you make bad choices. Even when I am really upset with you. .. Because even if I don’t like you so much in the moment. I love you. A lot.
Thank you for forgiving me. Over and over again. Thank you for teaching me. Thank you for being mine.
Man you guys make me really really happy. I wish there was a better stronger word I could use for how you make me feel… Because I have been sitting here crying harder than I have in a long time. I have a headache out of this world now..
But then I think of each of you.. and its like my heart lifts. I can taste. I can breathe again. I am better.
And because of each of you.. the perfect and imperfect pieces of you I am happy. (but insert a way better word than happy)
Its hard to feel both of those things. I’m sorry. I’m sorry I’m not always strong enough to do that.
Do you know how sorry I am?
I have so much I would have done differently for you at that end of your little life.
I’m sorry baby girl. Im sorry I was selfish. I didn’t even realize it at the time.
I know you are here. Jennifer. I know it. Right now. I know you are right here with me. I can somehow know you are next to me on this couch. But I don’t know how to feel you.
I don’t know how to embrace you without my arms.
But I know you are here.
I know you are so much wiser than me. I know you forgive me. But I don’t know how to accept any of that.
Sorry for more than my words could ever say. But I think you know. I think you know the depths and unending sorries I have. About when you were here and healthy. When you were here and dying. And when you are there.. Whatever there really is.
I know you are so beautiful. In ways I can’t imagine.. but only feel.
I know how happy it makes you to know that I know that.
I know you love me. I know .. I know so much. But my heart struggles to feel it.
I never want to stop crying. Because its only when I am like this that I really trust that I know all those things.
Jennifer. I would give anything to have you back. Mama just wants to feel your arms around me.
To kiss the top of your head. It’s a physical ache. It’s a literal pain.
To smooth your eyebrows. To look into your eyes. To hold you. So tight. so so so tight.
You are mine and I am yours. We were meant for each other.
Thank you for that. Thank you for making me a Mama.
You are worth this. This downpour of emotion. I wouldn’t trade it. You are worth it.
We are worth it. Mother and daughter. We are worth it.
How is it possible? How is it real that she has been gone for almost 5 years.
Why? I know I know I know. We aren’t supposed to ask that. I am supposed to trust in your reasons. I’m not supposed to wish it to be anybody but mine.
I don’t know how.
She was just a baby. She suffered. So much.
They ask me. So many parents of kids like her ask me if she knew. I don’t even know. Why didn’t you equip me better to help her then? Why don’t you help me more now?
It’s still so hard. Sometimes. Not all the time anymore. But damnit. Its so hard. And I’m fucking pissed off at you for it. I’m still so mad at you. I’m always going to be so mad at you.
Does she know how to read? Does she know how to ride a bike?
Why is she so distant. Why is so hard to feel her. I just want to know what its like. I want to know if she is still growing. I want to know what she looks like. I want to know who her friends are. I want to know.
I want to know.
Damn you. I want to know.
You let me down. More than I ever imagined you would. You let her hurt. you let her be scared.
You let me , let her hurt. You let me,let her be scared.
What the hell God. Why?
Hey. Please hold her for me.
Don’t fix her headband. She likes to wear it in the middle of her forehead like that. Play music for her.. let her dance. She loves to dance.
Tell her I love her. Please. Please. Tell her I’m sorry.
Take her swimming. She loves to swim. Let her help with the babies. She wanted to be a Mama so much.
I’m so fucking mad at you God. I can feel my rage pulsate through me. But I need you. I don’t know how to do this on my own. I don’t know how. I know I can’t survive this on my own.
I’m scared of how powerful these feelings can still be.
I’m scared of the times they aren’t.
I’m scared of the rest of my life. To sort through all of this.
Please. Help me. Be stronger. And patient. Help me be brave.
I say the words that I know I will always grieve her.. but lately.. really this whole past year I’ve just been mad about all of it.. And fighting like hell to deny it all too.. Been doing fairly well at it.. And had a distorted sense of pride about it ..
But not sure I have the fortitude to keep going like this..
Cuz see I know. I know it’s not fair to my kids to be denying my ache anymore because it starts to impact them. I am far less patient than I should be.. I am ready for them to go to bed before bedtime.. I am always squeezing to just hold it together.
I swore I would never ever be like this.. I dug in.. I dug in so hard for so many nights after she died.. And it helped. It allowed me the space to really be theirs ..
Frankly I have been pretty proud of that… thinking I was so much more advanced than other families who ran.. who weren’t able to confront the depths of their sorrow. .
And then eventually the time between needing to visit my grief to that degree spaced out.. and it was natural. But I still made the time for it. .. for her. The time needed to allow the piece of my truth that is dark and cold was gifting me longer times in between.. So I took that time and but still dealt with the blows when they came..
Then I stopped.
… and that became the challenge. How long can I maintain without diving into it. How long can I clench my teeth and force it back down. Refuse to give my pain of missing her a voice.
sorry buggers.. i know i only am so sad because i love you so much..
But its hard. Because its not the same constant loud brokenness. There is a longer respite between the time the waves of grief break .. longer spans of calm waters. And I have found a way to dive below the waves to avoid riding them.
I thought it was for them. I thought I was being a good mom to my surviving four. Maybe. Maybe there is some truth to that.. But its also been for me. Because I am stubborn. Because I am fucking tired of admitting through my fingers again and again in so many different ways.
I lost. I failed.
But I don’t lose. I don’t fail.
Still the singular truth of every single word I have written is ..
Cancer beat me.
Cancer stole you.
Its ok to have respites. Its ok to have longer spaces in between the pain.
But its not ok to refuse it. Its not ok to “win” by overriding my emotions. And its not brave or strong. Its not healing. Its not giving or selfless. Its the anthesis of that..
And thats really hard to swallow. But its also freeing. Its also time.
A common saying I had no idea where it came from .. but its been chasing itself around my head the last few days.. So I had to find out ..
according to wiktionary
Etymology : A common experience of tenement living in apartment-style housing in New York City, and other large cities, during the manufacturing boom of the late 19th and early 20th centuries. Apartments were built, similar in design, with the bedrooms located directly above and underneath one another. Thus, it was normal to hear a neighbor removing their shoes in the apartment above. As one shoe made a sound hitting the floor, the expectation for the other shoe to make a similar disturbance was created.
I was kinda the opposite of this. I honestly was walking around fairly confident in regards to my children there were no other shoes that could drop.. I have been more scared of something happening to Tony versus them… but still just in case we started all of Unravel for them because of her. ..
Because I know .. to my depths I know the biggest danger I can do something about is cancer.
Jonathan had been having some symptoms that made me be a bit more aware. The other morning they came to a head.. sorta.. In a normal situation I would have not taken him to the ER.. wouldn’t have asked about the MRI versus CT but I did… because something was gnawing at me, in me.. to take him..
This moment right after his MRI was so similar to Jennifer.. For both of them I had a hint something was wrong before I knew (spoiler alert its not cancer) For Jonathan the MRI tech asked if he had been hit in the back of the head ..
No. You sure? No injury back here? No.
But then I knew.
I was already fighting desperatly to stay in the present. I was lucky enough to get to be in the room with him during his MRI. I never was with Jennifer. And I watched him.. holding still like a true stud and I had to fight like hell not to dissolve .. to stay with him. The kid who actually needed me then.. versus the one stuck in memories who I can no longer help.
the shoe dropped. i craved you then jennifer. i wanted you to help. forever 6 but so much more than that now.
But I knew, with her questions this MRI tech.. she saw something..My boy was there with us as we walked back to the ER room where Daddy was waiting. My number one was Jonathans worry .. which was actually a huge reason to do the MRI .. to put his mind and Nicholas at ease.
To know he was ok..
Walking back I knew he wasn’t .. at least not totally.. But he didn’t need to know that yet. When Jennifer was diagnosed with the brain tumor..shared here.. when we pieced it together but before we saw the dr Tony and I couldn’t make eye contact. .. And this time I avoided it too.. Because I knew my fear would take over if I looked into my best friends eyes.
Luckily the wait was short.
Ummm mam can I talk to you out here please.
Its not cancer.
This poor doctor, he truly felt terrible for us.
But we did find something.
jennifer.jennifer.jennifer.help us baby.
I tried to really listen .. to really focus.. . No matter what it’s not terminal and not terminal we can do.
I pulled myself back to be present. It’s called chiara malformation. .. not enough room for the cerebellum and brain stem.
are you fucking kidding me. Brain stem. Again.
I wanted to tell you not in front of your son. Do you want to switch with your husband.
Nope. Lets have you tell them both. So he did. We got down to his level to talk to Jonathan and tell him.. they see something not quite right. But it’s not cancer.
Would you like to see the scans. Tony did. So the two of us went out to see. I had a few questions that the ER doc didn’t know the answers, but he would make some calls. But he did tell us right away, you can go home.. it’s not an emergency. He did tell us we would need to see a pediatric neurologist…
Tony went back to Jonathan and I went to make some calls. Bright side I know some people. ..
I was able to call two incredible, gentle and honest physicians we have been lucky enough to build relationships with. One helped facilitate getting him into a specialist quickly. I do not take for granted at all how lucky I was to have their help immediately.
I knew he would be ok.. Somehow I did… but I would be lying if I said I wasn’t scared.
We have now seen the dr. .. and he is ok. .. We watch to see if symptoms get worse . . If they do we consider surgery.
so why the hell am I more than scared now. why am I terrified?
I’ve been here before though. With a child that appeared to be doing better than they were. Both pre-cancer (we had no idea the ticking time bomb) and final check up visit Jennifer seemed to be so improved. .. but she wasn’t.. She was weeks from death and progression was starting. But nobody could tell..
Now I have to watch for symptoms for him.. without becoming overbearing.. obsessive and constantly scared…
And I can’t miss something either. I cannot do that again.
his brainstem.. honestly are you kidding me?
I have never felt so damaged after her death as I do now. And certainly never so gut wrenchingly scared.
jonathan leaned in to kiss his sister..
I literally have to watch and wait.. both of which I suck at.
Blood and stitches. Cancer and child loss. None of that has changed my most basic parenting philosophy. Let them be kids. Let them fall and make mistakes. Let them learn young to be better as adults. Figure it out for themselves what they can and cannot do.. That lesson will remain far longer than me telling them ever will.
But now this damn thing has me tying myself up in knots. Unable to do anything to fix the minor issue. But minor when it comes to my kids brain.. to their brain stem is apparently my kryptonite.
I watched him play with his cousins and siblings on our monkey bars and was stricken with fear. And that fear had a lot of layers. I am fully aware of that. But my struggle is to separate the real fear with the damaged DIPG mama fear. Because they are so interwoven with each other.
I don’t want to limit him.. To stop him from living and embracing life. But I don’t want to be foolish and allow him to make choices that endanger him. And right now I have to admit I am feeling pretty helpless at sorting it all out.
So now I feel like I am straining listening for that other shoe to drop.
a relatively strong, narrow current flowing outward from the beach through the surf zone and presenting a hazard to swimmers.
Its October.. the start of my once favorite time of year..
I love colder weather.. Our wedding anniversary.. It marks the start of the coming holidays seasons.. and its the month that I first became a Mama.. I loved this month and everything it represented.
I don’t anymore.. and that fills me with immense guilt.
Because I have an incredible husband.. Because I still have 4 incredible children to watch enjoy that magic that is this time of year.. and I am still a Mama of 5.. I feel like I should be getting to the point of just appreciating the time I was so lucky to have her.. Of all the wonderful memories I have with her..
this man loves his daughter.. tremendously. If love was enough.. she would never have experienced a moment of hurt..
But I’m not.. I want to ask if its normal.. If its ok.. But I am smart enough to know that nobody can answer that for me. I used to be so confident in how I was doing this grieving my daughter thing.. But not so much anymore.. Maybe because its not my constant now..
So I wonder.. and I question.. Shouldn’t I be at the point that it doesn’t still steal so much from me?
i love you jennifer.. i miss you .. but ill gladly take the pain of now for the beauty of everyday i got with you.. you have to know that
I know its not logical.. I know I can’t hurt her feelings.. But I’m still just a Mama of a 6 year old little girl so I worry.. I worry about how she might not understand these big sad feelings I have in regards to her..
So I fight it. I spend almost all of my energy burying my feet in the sand.. and fighting against it. And it drains me. See it’s not my tears or my sadness that hurt my beautiful 4 children now.. its the refusal of my pain.. Its the asinine belief that somehow I am strong enough to not be taken under by it..
You know I didn’t even know I felt this way until today.. — I have had a few people (THANK YOU!!!) go out of their way to text me that thy hate October– But I didn’t really get why they said it.. or why I was just feeling low.. Until this photo popped up on my FB memories.
DId you know why I kept retaking the picture? Did it scare you? Or bother you? Im sorry baby girl
A birthday party for her friend.. Her eye was turning in.. I remember trying so many angles for this picture.. to try to fix her eye.. To try to not make it obvious .. Because I was so fucking worried how she looked, how she would feel looking at the picture later in her life..
That picture above is the start of it all for me.. It kinda let me give me myself permission to hurt. .. to miss her. To hate that I missed it.. The ticking time bomb in her head.. To have the dread (and still love because of them) for this time of year.. 4 important months .. filled with happy joyful memories.. and horrible suffering memories.. and the memories we have yet to make this year to be added to it all..
A teacher friend was making a bulletin board with pictures for the teachers room.. This was one of my contributions…
Im so glad we got a last birthday and Christmas and Halloween and New Years with her.. but it also makes for some pretty intense flashbacks ..
And somehow this picture made me face that reality.. and allow it to be ok.. I don’t know if I am doing this grieving my daughter thing right.. but I know I am doing it .. I know I have to allow it. I know the biggest way I can cheat my 4 living beautiful souls.. and my 1 forever first daughter is to reject it all.. to not allow myself the dread and hurt.. The refusal of these tears, that would be the biggest disservice. I do know that.
They say the best thing to do when you get swept into ripcurrant is to swim into it.. with it.. until you can swim out of it..
So I will .. I promise. For Jonathan. For Nicholas. For Charlotte. For Bridgette. For Jennifer. I will stop fighting the pull .. and I will swim in and only because of that will I be able to swim my way out.
You ever been in the water.. and you start to get tired and your stroke gets slower and you sink a little deeper .. or like when you are in the current and you stop fighting it and let it pull you …
That’s what grief is like I think..
Sometimes its too strong and you simply are unable to resist its pull on you.. Especially in the beginning.. because really you are only just learning to swim. But then you learn.. you have to right? So then you feel it happening and you kick against it.. Just a few strong kicks will bring you back to the surface and you can gulp in air.
It happened to me today.
pull. kick. kick. breathe
.. but first I’ll rewind..
Two days ago I took my 4 younger kids with me to go see their sister. .. the living .. growing.. visible part of her. They.. especially our middle two have been asking questions over the last few months.. Hard questions.. The same ones over and over again. ..
mama why did she get cancer? but mama did it hurt her?
Actually the hardest ones aren’t the questions but the statements.
mama when I turn 6 and get my brain tumor. Mama when I die young..
No matter what I said back.. no matter how I fumbled to find the right words.. it was never enough. So I asked if they wanted to go ask the dr. And the answer was an emphatic yes.
So we did.
We parked. Nicholas emotions boiled over.. He yelled.. he doubled over in the car and screamed at me. He hurt. He was scared. I knew that.. but all I saw was a angry hurting little boy. So we waited.. and eventually he was ready to talk.. Simple words exchanged. Understanding.. promises.. and questions.. and then ..
just a few minutes alone ok mama..
And he was ready..
They were honored to get to sign the check for Dr. Monje.
We walked together.. each child in their own place .. heart and mind. Me too.. but them first. Today. Them first.
They could see her cells. . And they wanted to.. Charlotte went first, she was so excited. Hand in hand with Dr Monje down the hall. The girl that was just a baby when cancer first entered our world..
Charlotte and Pinkie were her constants… what she needed ..
Bridgette followed .. My on her terms only girl. She too went down the hall hand in hand with Dr Monje.. I had this moment watching them.. knowing this woman had walked a journey with each of my girls..
She never met Jennifer in life.. but she saved her in death.. and in turn all of us..
And so I chased them down the hall to join Bridgette in meeting her sister for the first time on this side of the rainbow.
pull. kick. kick. breathe
I barely took any pictures.. I just lived the moments with them.. rare for me.
Boys were next Nicholas asked to go alone.. And Jonathan allowed me to go with him.
My daughter a balls of cells.. I could see them this time with my own eyes.. big enough to really see without a microscope. Everything in me sprung to life. She was there.. oh sweet baby.. Every cell of me was on fire.. desperate to grab that flask and hold it to me.. to sing to her.. to whisper to her.. to comfort her.. To shake her.. to beg her..
please please please come back to me. .
please jennifer please
In a moment.. so many thoughts and feelings simultaneously reverberated through me. But it wasn’t my day. This was their day..
They all wanted to know.. to understand.. to learn..
And then they asked her their questions from the list they together had prepared the night before. .. hard ones.. intelligent ones.. and pure ones. And they were kids.. coloring and talking over each other.. becoming entranced with a white out pen.
At one point I sat on the floor and asked her the question that had been tearing me up.. slowly eating me alive since a recent trip I took to another lab..
wait.. rewind ..
(paraphrased from a warped memory) “With the ability to biopsy untreated DIPG tumors we can study the true disease”.. which translated simply to me.. that my daughter may not be useful anymore. .. That she was yet again. Failed by me.
I was going to write to the other researcher.. and ask.. Just ask for honesty if kids tumors that had been treated would be obsolete. .. But I couldn’t seem to do it.. so I just let my stomach eat away at itself .. and my fear steal me of sleep in the night..
With a tantruming Bridgette on the ground in front of me and a pressure in my head pushing me to just ask.. I found the words for the truth I feared.
But with biopsy now .. with those “virgin” untreated cells what does that mean for other treated cells…?? I cant remember what I even said .. but I remember her answer..
I remember in a room vibrating with the energy of 4 kids.. of a crying toddler.. there was a vacuum… that erased everything else going on.. That only allowed for this moment to be happening..
I remember her looking down at me ..
oh Libby Jennifer is so important. Jennifer taught us so much.. about how DIPG progresses.. about how its progressing in these kids.. And Libby we have untreated cells of hers too. .
Jennifer will always matter.
You bet your ass she will.. . this pictures shows that.. But it was so important for me to hear these remaining pieces of hers always will too..
That vacuum held me for a minute more.. and then the room broke open again ..
kick. kick. breathe.
I exhaled.. maybe really for the first time since I sat in that other wonderful researchers lab… as he shared the hope of the future with me. .. that dissolved her past.
I needed to celebrate silently afterwards so we got cold yogurt and headed to a new park
And back to today.. I am the assistant coach for our schools 6/7 grade volleyball team… Its been a good experience so far.. (maybe not for the girls since I haven’t played since I was their age!!!) Today was our first game..
I was watching these girls.. incredibly nervous during the game.. Emotions that I wasn’t expecting them to have, because I have never had a daughter their age..
Jonathan and Jennifer.. the very best of friends.. what would that look like now?
And in that moment the image of her came to me.. The memory of those cells that looked like grains of sand washed over me. .. And I looked at these girls.. And I felt it .. that current of emotion.. The burn in my eyes.. the itch in my legs to get up and just run. To run. And succumb. . to allow myself to go under the surface for just a minute.