My Cancer Story, Part 1: The Diagnosis
Many of you have been following my oncology saga and have been so supportive with your comments, prayers, and thoughts, and I will be forever grateful for each and every one of you. Some have asked for an address to send cards and letters and pictures their little ones have drawn, so here that is for you:
L.R.Knost c/o Little Hearts Books, LLC
10524 Moss Park Rd.
Orlando, FL 32832
And here is a link to the Help L.R.Knost Fight a Rare, Incurable Cancer & Continue Sharing the Gift of Peaceful Parenting with the World which, in conjunction with YouCaring, is a campaign the positive parenting community is joining together in to raise funds to donate peaceful parenting books and resources to hospitals and crisis family centers and to translate peaceful parenting resources into Spanish and expand distribution internationally along with a fund to help with my medical expenses as I battle neuroendocrine cancer.
I know that Facebook doesn’t show all of my updates in your newsfeeds, so I thought I’d share all of the updates to this point for those who’ve missed them and then share my diagnosis at the end:
June 6, 2014
Okay, friends, I’m freaking out just a little bit here and need lots and lots of positive and hopeful stories! I’m going in on Tuesday for some tests. I have some lymph nodes that have been swollen for way too long and now I have a small lump under my arm and some numbness and tingling in that arm (makes typing interesting!) and some other minor stuff going on. Chances are it’s just a stubborn low level infection, but when people start running tests for scary stuff, things start getting really real. I’m super healthy and never go to the doctor, even if I do get sick. I prefer homeopathic remedies and don’t even take over-the-counter medicines, so just going to the doctor makes me uncomfortable. In fact, until this I didn’t even have a primary care doctor! So share some positive stories with me so I can focus on those, please!!! 🙂
June 10, 2014
Ugh. This is nerve wracking. I’m sitting here waiting to find out what tests they’re going to run, and I’m already stressed out, lol. How am I going to handle the wait for the test results! I have to say, finding a lump under your arm does not make for a peaceful heart. I’m having to focus copious amounts of self-control and intentional gentle thoughts to stay a peaceful mama at the moment, but the positive side is that practicing peace intentionally toward others has a rebound effect of peace from others that is incredibly healing and lovely. Prayers and positive thoughts welcome, gentle friends! <3
June 11, 2014
Raise your hand (or, you know, click like or leave a comment 😉 ) if you are like me and say stupid things when you’re nervous. I’m pretty sure my incredibly likeable and excellent new doctor thinks I’m a world-class flake because I totally forgot to eat today (I do that when I’m writing sometimes, which I was before my appointment) but I forgot that I forgot to eat until she was scheduling a fasting blood test for me and I blurted out, “Oh, wait, we can do that now because I forgot that I forgot to eat today!” She looked at her watch and gave me a ‘mom look’ and said, “It’s 5:30. Don’t do that anymore.” What do you think she’d say if she knew I was up til 2-3 am every night working on my next book deadline? (Let’s just keep that a secret, lol.) Hope you’re having a great evening, mamas and daddies! 🙂
June 13, 2014
Someone tell me to stop Googling ‘swollen lymph nodes’ please! They’ve got me scheduled for tests Mon, Wed, Thurs, and Fri next week, so I’ll know something soon enough without reading all of this scary stuff. Ugh.
June 16, 2014
Full week of hospitals and doctors and tests for these swollen lymph nodes, friends, so it’ll be a bit quiet here on FB. I have a little one on breathing treatments, too, so positive thoughts and prayers for my family are much appreciated this week! <3
June 18, 2014
Heading out for more medical tests (lucky me 😉 ) but just wanted to pop in and address a few comments I’ve seen recently. I’ve said this before, but it needs to be repeated:
“Little Hearts is not a religious page, but I am a Christian. My purpose in writing my newest release, ‘Jesus, the Gentle Parent: Gentle Christian Parenting,’ and sharing excerpts from it is to right wrongs within a specific community, not to convert anyone or preach to anyone. It’s not my job or my desire to subjugate anyone’s belief system. It is my job to protect children and educate parents about the immense power of kindness, gentleness, connectedness, communication, and compassion to create happy, peaceful homes. It doesn’t matter what culture, religion, gender, or ethnicity you identify with or lifestyle you live, you are welcome here with open arms to grow and learn together with us in this community of gentle parents, always.” <3
So, let’s take some time today to share a bit about ourselves here in the comments, to open up and get to know and appreciate the colorful array of backgrounds, beliefs, cultures, and parenting choices represented here. Whether you’re attached or single, whether you’re Christian or Muslim or Hindi or atheist, etc, whether you breastfeed or bottle-feed or both, whether you bedshare or room share or have separate sleeping areas, whether you babywear or use a stroller, whether you work outside or inside the home, whether you live in the US or in some other place across this lovely planet, share a bit about what makes you uniquely and wonderfully you. 🙂
June 20, 2014
Just a little vignette of gentle parenting at work from a bit earlier today I thought I’d share with you, mamas and daddies 🙂 :
I’m one seriously stressed out mama these days with all of these medical tests, and that means I’ve got little ones who are showing some stress behaviors despite my best efforts to keep things as normal as possible in their lives during this diagnostic process. For instance, my super mellow non-tantrum-prone littlest had a major meltdown after I got home from my doctor appointment today. It came out of the blue and made no sense whatsoever, but as she stomped and screamed about her stuffed animals’ “wenning” (“wedding”) being “Woo-end! Dust woo-end!” (“Ruined! Just ruined!”), I breathed through my initial stress reaction and took a few moments to listen and observe so I could respond intentionally and compassionately to the need she was expressing instead of just reacting to the behavior itself. I realized that even though she has no idea what’s going on, she was sensing the unease in the house and also was stressed by the unusual amount of time she’s spending apart from me while I go through these tests. I stayed close and told her that I was here and I heard her and asked how I could help her. At first she got angrier and tried to hit me, so I gently stopped her and told her that it was okay to be upset, but not okay to hit me, and I asked her if she needed something like a pillow to hit or kick or if she needed a calm-me-jar to shake. She screamed “No!” and shook her tiny fists, but didn’t try to hit again, then she calmed just enough to tell me “I mad a you, mama” (“I’m mad at you, mama”). I told her it was okay to be mad at me and asked if she knew why she was angry. She repeated that I had ruined her stuffed animals’ wedding (no idea how I was involved in the destruction of a stuffed wedding while at the doctor’s, lol), so I said that I was sorry and asked if I could help her to fix it, and after a few more moments of upset she calmed and wanted to hug and then decided to accept help to restore the wedding. We were able to reconnect through play and go on with our day peacefully, but more importantly she was able to work through some big emotions she was feeling and had no idea how to express.
Life will throw us curveballs and bad things sometimes happen, but our little ones only get one childhood and they need us to be the adults and help and guide and empathize and encourage and comfort them no matter what we’ve got going on in our lives. It’s not easy, but it is so important, and they are learning from us not only how to handle their emotions in the present, but also how to handle life’s stresses and hardships. They are always watching, always learning, and always so, so vulnerable and precious. It’s hard, yes, but so very worth the effort. <3
June 21, 2014
“We’re referring you to an oncologist for more tests.” It’s taken me a few days to process that. Scary words, yes, but they aren’t a diagnosis, just a step in the diagnostic process which I am still expecting to turn out just fine. I’m seeing an oncologist on Tuesday where I’ll learn what that further testing will be. I’m obviously a bit preoccupied and also time-pressed with all of the time I’m spending at hospitals and doctor’s offices, but I’ll still pop on Facebook off and on when I can. If you’ve messaged me with a question or posted one on the wall, please just know that I’ll get to as many questions as I can when I can, okay? Thanks for understanding. Hopefully things will be back to normal soon. 🙂
June 24, 2014
At the oncologist waiting to be seen. Anyone want to help keep my mind off of things by sharing something cute or sweet or funny your little one’s done lately? 🙂
June 29, 2014
For those of you following my oncology saga, my only update at the moment is that there are no updates. I have several more tests coming up to investigate the two small lumps next to my spine and several small, swollen lymph nodes in my neck, under my arm, and in my leg. I feel healthy and look and feel perfectly normal, but knowing that something ominous may be going on in my body makes me feel a bit like a deer in the headlights. As the benign causes get eliminated one by one, the chances of finding something like lymphoma increase exponentially. It’s like seeing danger race toward me and being frozen in place, unable to escape. I’m coping and keeping our lives as normal as possible outside of all the time I’m spending in hospitals and doctor’s offices, but I’ll be honest and tell you it’s really, really hard to think about anything else right now. My energy is focused on helping my children process all of this in age-appropriate ways and my sweet hubby’s energy is focused on supporting me and helping out wherever and whenever he can. I’m still here on the board a few times a day sharing what I can, but if I don’t get to your questions during this time, please understand. Thank you to everyone who has left comments and sent me messages and emails expressing your care and concern. You don’t know how much that means to me. I’m trying to share this process with you because I believe that giving you little vignettes of life in the midst of crisis and stress is as important as giving you slices of normal day to day life so that you can see and know that I’m ‘in the trenches’ with you every day and understand the highs and lows, struggles and monotony and joys and sorrows of real life. We are all connected in the deepest of human experiences, and I find such joy and comfort in knowing that this global community of gentle, loving parents is on this journey with me, whatever may come. I appreciate all of you more than you know. <3
June 30, 2014
Okay, this isn’t a rant, just something I want to share with you, friends…
I just had to delete a snide comment from the Little Hearts site, which I have to do every once in awhile. It doesn’t really bother me when people have a differing opinion as long as they express it politely, but that is rarely the case. One thing I’ve noticed is that these negative comments often come with riders like “in your idealized world” and “clearly written by someone who doesn’t have children” and “just wait until your children reach their teens” and “the writer has obviously never had to deal with a strong willed child” etc. The thing that really gets me, though, is how often these negative comments (and even reviews on my books) include things like “the writer only tells why punishment is bad, but doesn’t give alternatives.” There are hundreds of posts on the Little Hearts site with gentle parenting alternatives to punishment, and every single book I’ve written gives specific tools for working with children through specific behavior issues. In my latest book, ‘Jesus, the Gentle Parent: Gentle Christian Parenting,’ for instance, even though the focus of the book is on examining the doctrinal misinterpretations and misunderstandings that have led to the often harsh punitive parenting practices promoted by mainstream Christianity, I also included excerpts from each of my other books for the sole purpose of providing gentle parenting alternatives to that punitive parenting. And, as far as the other comments, there is an ‘About the Author’ page on the Little Hearts site that gives all the information people need about my background and children. For the record, though, I have six children from young adults all the way down to a preschooler, two of whom are strong-willed, three with sensory issues, two with ADD, and one with a significant learning disability. And as far as my ‘idealized’ world, I started my gentle journey as an unwed, pregnant teenager, and my hubby and I have been through layoffs and accidents and sicknesses and the loss of a son in our 27 years together so far, and right now we are facing a possible cancer diagnosis. So, no idealized world here. BUT I do have ideals, and I fight for them passionately. Having ideals simply means that I work for what I believe, and when I fail (and I do) that I keep working and trying again and again until I get it right. 🙂
July 5, 2014
Do you have anyone in your life who just always seems to say the wrong thing at the wrong time or a family member or friend who said the wrong thing when you were hurting? I sure do. On this oncology journey, for example, there have been a few times I wish I lived in a Hobbit Hole far, far away. The one time in my life that really stands out, though, is when my son was diagnosed with a rare genetic disorder that was ‘incompatible with life.’ We knew he was going to die, and we were working our way toward accepting that and simply loving him as long as we had him when a long-time friend contacted me to tell me that I didn’t have enough faith because if I did, my faith would heal my son. I remember feeling like I’d suddenly been punched in the stomach by someone I trusted just when I needed support and understanding the most. That was unbelievably hurtful, honestly, but I realized something then and at other times when the wrong words were said at the wrong times that has helped me to respond to the heart of the person rather than to their words. I realized that every person’s belief system is a collection of deeply held hopes that are based on their own unique life experiences, and when they share words of comfort and advice it is really their hope that they are offering. While I may not agree with their belief system, I can appreciate their heart and respond to their intention rather than their articulation with a simple smile and a hug. And then I can let the words themselves fade away and focus on the loving heart that prompted the person to reach out. We all need hope. And we all want to share our hope with others who are hurting. When it is shared in a less-than-expertly-wrapped package, we have the choice to discard the wrapping and accept the beautiful gift of hope.
July 5, 2014
I try to prepare ahead for ‘life’ as much as possible because I’m a planner by nature, but sometimes life just happens and you have to roll with it. I admit that I’m overwhelmed with life right now as I spend day after day in hospitals and at doctor’s offices undergoing tests in this present curveball life has thrown at me, and yet a truth that I’ve discovered over time and experience still holds true…It’s the unexpected that catches me by surprise and creates the most joy, the most pain, the most memorable of life’s moments, because it is the unexpected that we remember most, whether good or bad, ordinary or extraordinary. It is those unexpected moments that make life beautiful and mundane and exhilarating and painful and unutterably, exquisitely rich…moments all wrapped up in small, timeless vignettes of shared tears and laughter and hugs and arguments and hopes and failures. It’s hard to treasure those moments in the moment, I know, when the tears seem to outnumber the giggles and the pain seems to outweigh the joy and the hopes seem to be crushed by the failures, but as the years go by and these present moments become part of the past, they soften and mellow and one day we suddenly discover that the things we were so desperate to leave behind are the very things we hold onto as our most precious memories. Don’t try to treasure these moments as they happen, mamas and daddies. It’s just not possible to see the beauty and the strength and the wonder of our daily lives without the clarity of hindsight. But do hold onto the knowledge that these days will pass and one day you will look back and be so proud of yourself for your successes and forgiving of your failures, and try to remember that all the hard moments and small triumphs and tired tears and warm hugs and little frustrations and big belly laughs will be the most beautiful memories imaginable when tiny, pattering feet grow into the footsteps that will take your children out into the world to create a lifetime of memories of their own. 🙂
July 7, 2014
Back in the hospital for the day for a contrast CT. Then I’ll see the oncologist on Wed. for results and to see where we go from here. What are you up to today, mamas and daddies? Want to share some cute stories about your little ones to keep me distracted? 🙂
July 9, 2014
Well, saw the oncologist today for some results and he had good news and bad news. The good news is that the swollen lymph nodes didn’t show signs of malignancy, so they are just reacting to something else going on. The bad news is that they found two small masses in my lungs and one in my liver, so I’m off to a consulting pulmonary oncologist tomorrow, then an MRI and then a PET scan over the next few days, then we’ll discuss the results. Ugh. This is kind of starting to freak me out. 🙁
July 12, 2014
Words you want to hear from a pulmonary oncologist, “Hopefully it’s benign.” Words you don’t want to hear from a pulmonary oncologist, “It’s a pretty big mass, though, and you do have one big risk factor.” You know, I’m not an angry person. I’m not walking wounded, blaming my childhood traumas and anything and everything else I can for my adult mistakes and issues. But it does make me angry that I even have “one big risk factor” for lung cancer because I have never smoked, don’t drink and so have never been clubbing or hung out in smoke-filled bars, never done any drugs, and don’t have any diseases that increase my chances of lung cancer…but because my biological father spent the first few years of my life filling my tiny, developing lungs with second-hand smoke before he abandoned me, I now have “one big risk factor” for a potentially deadly disease. Please, mamas and daddies, if you or anyone else in your child’s life is a smoker, don’t expose your children to it, not ever. It’s not their choice to fill their little lungs with a carcinogen, but they may be the ones who have to face the consequences of your choices one day. <3
July 13, 2014
For those of you following my oncology saga, I’m having an MRI on Wednesday and a PET scan on Friday this week. I’ll be radioactive after my PET scan for a few hours and have to stay away from my littlest, which neither of us will enjoy particularly, but my older children will keep her occupied. (Oh, and my older children are rather excited about the radioactivity, btw. They’re pretty sure I’m going to turn into a superhero, lol. Any thoughts on what my superhero name should be? 😉 )
July 14, 2014
I shared the status above yesterday, and I so appreciate the amazing support and love that you mamas and daddies poured out in the comments. Thank you all so much. Your encouragement and prayers are absolutely priceless. There was one comment, though, that stood out because it was abrasive and sarcastic (I deleted it and won’t share it here because I don’t want the commenter to feel targeted by this post) and I wanted to share my thoughts about it with you to share how I process things ‘in real life.’ I’m going through a scary, difficult time right now, and I’m human just like everyone else, so my immediate internal reaction was a lot of negative and chaotic feelings. But instead of responding defensively and reactively to the person, I breathed through those negative feelings instead of acting on them and simply waited for the internal storm to pass. Then I reread the comment with the much clearer eyes of peace and compassion and ‘read between the lines’ to see that this person was clearly reacting to their own internal storm. I don’t know what private pain fueled their reaction, but I do know that it is hurting people who hurt people, and so I can give this hurting person grace and compassion. That is my ‘in real life’ processing in a nutshell. 🙂
July 16, 2014
I’m back in the hospital on this grey and stormy morning for some more tests as I continue my oncology saga, mamas and daddies. Some of you have asked why I’m willing to share such a scary and difficult time in my life with you, and I wanted to share my thoughts about that before I go in for my next test. The thing is, we all share in these things in one form or another. We all have good times and bad times and hopes and fears and successes and failures and joys and traumas and triumphs and tragedies in our lives. We all have to live and work and be good citizens and spouses and friends and parents and just good people, even in the midst of crisis. That’s just part of the human experience, and I believe that all of our human experiences have value, even the hard ones. We can learn and grow and develop empathy and compassion through our experiences if we don’t allow ourselves to be hardened and embittered by them. And we can exponentially expand the value of our experiences if we share them instead of isolate ourselves with them. Sharing the hard things in my life like the devastating loss of my son, Sammy, makes those hard things a little less hard, a little more bearable, because knowing that someone else finds comfort and healing in my words is deeply comforting and healing for me. And sharing this scary oncology saga with you as I go through it makes it just a bit less scary because I know how life-enriching it is seeing someone go through a difficult time and watching how they process it and learning that sharing the good things in life, the necessary things like kindness and hope and compassion, doesn’t just stop when bad things happen. Giving those good things to my children, to my husband, to my family, to my friends, both in real life and virtually, becomes even more necessary, more precious, a gift that I can continue to give even though I am scared and stressed and feeling overwhelmed. The precepts of gentle parenting…respect, understanding, connection, communication, cooperation…don’t just apply to children, and they aren’t just for stress-free, idyllic times in our lives. They are ideals, yes, but that just means that they are the goals we shoot for, day in and day out, even in the midst of crisis, even when we’ve failed, even when we’re hurting, even when life stinks. I’m sharing my journey here so that you can see that I’m living what I write, what I believe, what I KNOW, even when life is hard. <3
July 18, 2014
Ugh. It’s 2:30 am and my littlest just started vomiting out of the blue. I’ve got to be up at 7 am to go for my PET scan in this endless oncology saga and I’m going to be radioactive and have to stay at least five feet away from her for 24 hours, but all she’s going to want to do is cuddle with mommy because she’s not feeling well. This stinks. 🙁
July 18, 2014
Took a selfie before my MRI. Now I’m heading in for some more oncology tests. This time it’s my PET scan, so I’ll be radioactive for the next 24 hours. I’ll try to write something super once my superhero powers kick in. 🙂
July 18, 2014
Stage 1 of ‘radioactive mama’ is complete! When I left for my PET scan at the crack of dawn, my son laid down with my little cosleeper so she wouldn’t be alone and scared if she woke up and so he could handle things if she started throwing up again (he’s my pre-med guy <3 ) but she didn’t wake up or throw up. Success for Stage 1! Now my middle two are playing with my two smallest and keeping them away from me per the oncology dr’s instructions. So many more hours to go, though! Just keep swimming. Just keep swimming. 🙂
July 24, 2014
If you’ve left me a question in the private messages and haven’t received a reply, please know that I’m not intentionally ignoring anyone. I just haven’t been able to keep up with everything while I’ve been spending so much time in hospitals and at doctors during this seemingly never-ending oncology saga. Some of the testing has caused adverse reactions, and I pretty much feel like I’ve been hit by a truck most days, lol. I’ll get to as many questions as I can over the weekend, okay? Thank you so much for your patience, gentle friends!
July 29, 2014
In the van on the way to my oncology appt:
Renaissance Girl (15): “If anyone ever tries to mind-control me, I’m just going to say ‘wannawannawannawanna’ over and over until they stop trying to take over my brain.”
Older brother: “Sorry. It’s my fault. I let her read my comics.”
July 29, 2014
For those of you following my oncology saga, I’m going in for surgery tomorrow or the next day (they’re calling me at the crack of dawn to tell me when to head in to the hospital) to biopsy the “suspicious node” in my lung. The node is in the center of my chest at the back and bottom of my right lung, so it’s pretty difficult to access. They actually talked about removing a portion of my lung (yikes!), but they are going to try to put me into a cat scan machine to guide the hollow core biopsy thing between my ribs and see if they can get it to the right area of my lung. It’ll be an outpatient surgery as long as there are no complications, but since they are technically puncturing my lung there is a risk of pneumothorax (my lung could collapse o_O) in which case they’ll have to put in a chest tube and I’ll be in the hospital for a few days so my lung can heal. I’ll get the results of the biopsy next week, I guess. Then I’m headed up to Mayo with all of my scans and labs and results so they can evaluate everything and possibly do another biopsy, this time on my lymph nodes.
I’ll be honest, at the moment I’m far more scared of the lung surgery than the possibility of malignancy, but I’m guessing that will change once the surgery is over and I’m waiting for the pathology results. I appreciate you, friends, more than you know. All of the support and prayers and encouragement you have given me through this has been absolutely priceless. Thank you all. I’ll update when I can.
July 30, 2014
Okay, on my way into surgery in a few minutes. Thank you all for your support and prayers. <3 ttyl!
July 31, 2014
Here’s the latest update: I got the call first thing yesterday and went in for surgery soon after. They ended up having to go in through my back right next to my spine (o_O). I had an adverse reaction to the meds and also ended up with a probable minor pneumothorax (a small pocket of air trapped outside of my lung) which makes it very difficult and painful to breathe. I’m a bit better today, though, and hopefully will have the results from pathology sometime next week. Thank you to everyone who took the time to pray and send me positive thoughts and encouragement. I’ll update when I know anything. 🙂
August 4, 2014
So I may or may not get results of my biopsy today which, of course, necessitates me being late because I had to paint my toenails. Clearly, you have to have pretty, pink toenails if you’re facing a possible cancer diagnosis, lol. On a more serious note, though, this particular type of biopsy is only about 50% accurate when it comes to negatives/false-negatives so I don’t know that I’ll really know much even if I do get the results today. Next step is lymph node biopsy which is far more accurate. I kind of wish they’d have just started there, but they have their reasons, I guess. This diagnostic process seems endless, but I think I’m getting to the stage where the process feels like a safer place to stay than actually getting a diagnosis. Nearly all of the benign causes have been ruled out already. Kind of scary. Well, more than ‘kind of,’ to be honest. All of your support, encouragement, and prayers are helping, though, more than you know. Thank you! <3
August 4, 2014
For those of you following my oncology saga, I got the results of my biopsy today and…well, they recommended another biopsy, only this time of my lymph nodes instead of my lung. Not entirely unexpected since they couldn’t get to the lung node with the hollow core biopsy and had to settle for a fine needle biopsy which has only a 50% accuracy rate. They were able to rule out lung cancer and metastatic melanoma, which is great. BUT the biopsy did indicate some findings that are highly suspicious for lymphoma, which is actually what they’ve been suspicious of from the beginning. We’ve been working our way toward a lymph node biopsy all along, so that isn’t surprising. Anyway, I’ll keep you updated about what’s to come when I know myself. Thank you for your love and support, mamas and daddies! You’re awesome. <3
August 5, 2014
Since I’m a “difficult to diagnose case” I’ve been referred to the Oncology Department at Mayo Clinic in Jacksonville. My first appointment is August 11th.
August 5, 2014
“It’s not our job to toughen our children up to face a cruel and heartless world. It’s our job to raise children who will make the world a little less cruel and heartless.”
Every time that quote is shared I get comments and messages from people saying things like, “Maybe gentle parenting works in your ideal world, but people have to live in the real world,” and, “If you lived in the real world like the rest of us you’d know that crap about not toughening up your children is just setting them up to be bullied and walked all over for the rest of their lives.” I understand where those comments are coming from. The world can be cruel. And the world can be heartless. I know that first hand. Here’s a bit of my story:
My parents divorced when I was a small child. I was neglected and abused while in the ‘care’ of my biological father who spent 99% of his waking hours drunk, locked me in his car in the parking lot of various bars so he could get even drunker, got in drunken brawls that I broke up, left me with his abusive addict sister whose own children were taken away for child abuse repeatedly, and more often than not spent the little money he had on alcohol instead of food, leaving me to go to bed hungry and often left alone while he went out drinking again. Thankfully, he eventually abandoned me and my mother got full custody. My mother (who astounds me to this day with her ability to remain strong and kind and good despite what my biological father put us through) eventually remarried, and my wonderful new stepfather adopted me when I was sixteen. I got pregnant soon after and married my baby’s daddy. My amazing hubby and I have struggled through multiple lay-offs, injuries, sicknesses, and the loss of thirteen babies, including a set of triplets I lost at three months pregnant and our sweet son, Sammy, who we lost at birth. In the midst of all of that, we had our six children, four of whom were preemies. Of our six, we have some with asthma, a couple with heart issues related to their prematurity, three with sensory issues (one with full-blown SPD, severe dyslexia, ADD, visual and auditory processing issues, and other learning disabilities), and two of our children are gifted with wills of steel. My oldest son has been through two spinal surgeries in the last couple of years, and, in the last year alone, my hubby was injured in a terrible mower accident that kept him out of work for almost three months and then a few months later was out of work again after a foot injury, and, to top it all off, I have been going through months of diagnostic testing for suspected lymphoma.
So, no, my world is not and never has been ideal. But, yes, gentle parenting is not only possible, but POWERFUL, even (or especially) in the midst of ‘real life.’ And kindness, goodness, compassion, and gentleness are not weaknesses in this often cruel and heartless world. They are the strengths that make navigating this world and changing it for the better possible. L.R. <3
August 13, 2014
Playing at the park with my little ones today in between tests and appointments at Mayo. Looks like I’ve got a major surgery coming up soon to take out the part of my right lower lung with the mass in it. Pathology will confirm or eliminate lymphoma at that point. I’ll know for sure on Friday and update then. Thank you all for your love and support. You’re awesome. 🙂
August 15, 2014
Things you don’t want to hear an oncologist say:
“I’m getting ready to say some scary things.”
#MayoClinic #NotMyBestDay #MoreLater
August 22, 2014
I appreciate your thoughts and prayers more than you know. I haven’t had my ‘D-day’ yet (diagnosis day) so I’m being careful about what I share. This thing has taken so many turns that I want to wait until I get an official diagnosis before sharing it with everyone. The doctors at Mayo are 99.9% certain that it is cancer, but the rare type of tumor that I have is even rarer in its location (it’s not lung cancer, but the tumor is in my lung) and presentation, so they don’t know if it’s a met (secondary tumor) thrown off from a primary tumor somewhere else or if it’s localized. I’ll be having a major lung resection to remove the part of my lung with the tumor in the next couple of weeks, then they’ll know more about prognosis and treatment plans, etc. I’m trying my best to keep the Little Hearts page updated with a regular stream of memes and posts and updates at the moment so if I have an extended downtime while fighting this beast I won’t lose everything I’ve worked so hard to build. My main focus right now, though, is helping my littlest ones through all of this upheaval as we’ve had to travel six hours round trip for appointments, sometimes more than once a week, and I’ve been gone from my smallest for more time than I’ve ever been gone before. My older children have been amazing about stepping up and taking care of the little ones so my hubby can keep working and keep our insurance up to date, but it’s wearing on all of us already and we haven’t even begun to actually deal with the surgery and recovery and whatever treatments are to come yet. I’ll keep you updated as soon as I know more. 🙂
August 23, 2014
Many of you have asked how you can help as I head into this major surgery next week and then possibly chemo/radiation treatments in the coming months. One super helpful thing you can do is share some of your ideas with me. I’m very concerned about my little cosleeper, Cricket, and how she’s going to handle being away from me while I’m in the hospital. My eight-year-old, Funny Face, is also already showing some anxiety, and I’ve been working with her to help her process her feelings and fears. On a very practical level, though, I’m looking for ways to help my oldest children cope with the two littlest who will undoubtedly be stressed and probably exhibiting stress behaviors such as difficulty sleeping and unwillingness to cooperate. One thing I’m doing is buying small presents for each of them (wrapped up and labeled ‘From Mommy – I love you to the moon and back, and I’ll be back very soon! ‘) so that each night my older children (one of whom will be taking my place cosleeping with my little Cricket) can remind the little ones that they have something special waiting for them in the morning and each morning when they wake up without mommy’s special cuddles they’ll have a gift from me to open instead. I’m also spending time with my little ones at the house they’ll be staying at so it will feel comfortable and familiar to them, and I’m stocking the fridge and pantry with their normal foods, bringing along their own blankets and pillows, and packing a few of their favorite toys to bring.
I’d love to hear your ideas about how to make this easier for everyone, both for my little ones and for my older ones who will be stressed themselves but still need to take care of their little sisters. 🙂
August 27, 2014
The recovery from the surgery to remove this tumor, I’m told, will take months, and then I may be going into months of chemo/radiation which will make doing some of the things we love to do as a family impossible for a time. My two littlest have been increasingly clingy and cranky recently as my surgery date approaches and, while some believe that preparing children for a separation involves getting them used to separation by leaving them for increasing periods of time, I’m taking the opposite approach. I’m spending time with them in the places and with the people that will be caring for them so they will be comfortable with those people and places. And I’m filling their buckets with my time and my presence and my patience and with laughter and cuddles and sweet memories that we are building together. We’ve been to the zoo and we’ve painted and gone to book stores and spent time exploring new parks and going on walks and just hanging out together in the quiet peace of our home. Here is the Bucket List for a Happy Childhood that I wrote awhile back with some of the things that we do on a regular basis along with some we’re revisiting to make new memories these days. 🙂
August 28th, 2014
Many of you have asked me how I’m staying so calm and positive in the face of a rapidly approaching surgery to remove the tumor that doctors are 99.9% certain is a rare form of cancer. The simple answer is, “I’m not, at least not entirely.” There are times I feel overwhelmed and stressed and can’t help thinking about the ‘what-ifs’ and times I worry desperately about my children’s futures. Those are the times that I gently ‘parent’ myself and I find my children gently ‘parenting’ me. When I’m lying awake, too stressed to sleep, I tell myself, “It’s okay to be scared and overwhelmed. Those feelings are normal,” and then I try to identify specifically what it is I’m stressed about at that moment and come up with at least one solution, one proactive thing I can do, to address the issue. Once I’ve identified the problem and come up with a solution, I can sleep more easily.
When I’ve spoken with a bit less patience than I normally do to my littlest, she will first ‘check with me’ to see if I’m mad at her, “Do you mad a me, mama?” (“Are you mad at me, mama?”) and I’ll say, “No, I’m sorry. I didn’t mean to speak so impatiently to you. I’m feeling a little stressed, but it’s not your fault.” Then she will climb into my lap, put her tiny hands on my face, look into my eyes, and say, “Wet’s bweef togedew, k?” (“Let’s breathe together, okay?”) Note: I don’t get mad at this tiny little newcomer to our world, not ever, but she’s in the stage of identifying emotions and often will ask about emotions as a part of her learning process.
My little Funny Face (8) is gifted with a will of steel and a heart of gold. She’s clingy right now, having a bit of trouble sleeping, asking a lot of questions, and using the word ‘cancer’ frequently (causes a minor shock to run through me every time, but I’m getting used to it…I guess) because that’s how she processes things, chipping away at them and examining them and familiarizing herself with them. She is alternately acting out her own stress and worries (and we’re working together through those feelings and behaviors) and stepping up to help in any way she can.
My sensory sweetie, Renaissance Girl (15), is like a lovely, sweet, emotional barometer. When I’m getting overwhelmed she will often simply feel it without me saying or doing anything, and she’ll quietly ask if I need her to take the smaller ones for a bit so I can have a break. She’s also been making dinner on a regular basis, which, as you’ll know if you’ve followed Little Hearts for any length of time, is a HUGE blessing for me. I haven’t set the kitchen on fire in over a month!
My pre-med guy, Doc (now 20!), is that stalwart rock of a person that everyone needs to have in their lives. He’s preparing for his MCAT’s, working on his medical school application, taking classes to get certified as an EMT so he can work his way through med school, and is working his schedule around helping out with the girls and has arranged time off to go with us when we move temporarily to Jacksonville for my surgery and recovery. The girls are used to being with him at home, so this is greatly easing my mind about how they’ll handle me being in the hospital for several days.
My older children are checking in with me frequently to see what they can do to help, rearranging their work schedules to be available during and after my surgery, and pulling together to put in place a plan for my surgery, recovery, and possible treatments afterward.
And, of course, my burly bear of a hubby is being his normal amazing self, offering to talk when he thinks I need to, asking what he can do to make all of this easier, taking the small ones for ice cream and to the park, and simply being the good, kind, and wonderful person that he is.
So, no, I am not all zen about facing surgery and cancer. I am human. I am scared. I am overwhelmed at times. But, I’m using the gentle coping strategies that I normally employ with my children, and I’ve got my incredible family support system, and I have all of your wonderful and supportive thoughts and prayers to help me through.
This I know, I cannot control all of the random happenings of life, but I can control my response to them. This is a hard thing, but not the hardest thing I’ve ever faced. I have survived in the past, and I will survive this…no, I will do more than just survive. I will not only live through cancer…I will continue to live and love and enjoy my life and my family and my work throughout this cancer journey. I think my new motto is going to be ‘I cancerVIVE’ because I can, and I will. (Vive is French for ‘to live’ or ‘live long’ and has the connotation of a zest for life, to be full of life, a life well lived)
Here’s a video from this time last year with me and my four youngest, just so you can put faces to names (well, nicknames 🙂 ):
September 3, 2014
My littlest is too young to know how serious all of this is, and yet somehow she knows, and so she clings to me as if her very life depended on it and she cries that it’s too hot or too cold or she’s thirsty or hungry or full. Those are the only words she has right now to express the unease that she instinctively feels as the time that “mama goin’ a hotiboo” (“mommy’s going to the hospital”) rapidly approaches. I offer to turn on or off the fan, offer drinks and food, but nothing satisfies and her clinging and crying intensify. And so I hold her close and whisper, “I hear you, sweet girl, I hear you. Mama’s right here,” and my heart breaks because I want to promise her I’ll always be right here, I want to promise her a lifetime, and yet for the first time I can’t. I don’t know what tomorrow holds. I guess you never really do, but you think you have forever and there’s so much confidence and comfort in that thought. I can’t promise her forever, as much as my heart aches to, and so I simply hold her and tell her I’ll love her forever because that is a promise I can keep. This is so hard.
September 3, 2014
We leave for the 3 hour drive to Mayo in Jacksonville early tomorrow (Thursday, September 4th). My pre-op is scheduled for that afternoon and my surgery for the following morning on the 5th. I broke down when I started packing for the hospital and realized that, for the first time ever, I couldn’t pack my two littlest’s clothes in my suitcase along with mine like I usually do because we were going to be apart. So I stopped packing. Holding my little one is way better than packing, anyway.
September 4, 2014
Okay, final update (and a small anatomy lesson as a bonus 🙂 ) on this crazy oncology journey before my surgery, friends. The working diagnosis at this point is a rare pulmonary neuroendocrine tumor. The neuroendocrine system is a network of cells distributed throughout the human body. It consists of nerve cells and endocrine cells and exists to regulate all of the functions of the other body organs and systems. Neuroendocrine cancers can be localized or spread throughout the body. The doctors at Mayo won’t know if or how far the cancer has spread until they get me into the operating room. They plan to collapse my lung (o_O), take out the portion with the tumor, and then look for any evidence that the cancer has advanced beyond the tumor. I’ll know within a day or two if their diagnosis was correct and what kind of treatments I’m facing. Oh, and here’s a fun fact: Neuroendocrine cancer is often a ‘signal’ cancer that either precedes or coexists with other cancers. Super scary stuff. But I cancerVIVE…and I will. I have to…
My littlest is barely out of diapers and just self-weaned in February. She NEEDS her mama.
My Funny Face (8) often conceals her sensitive heart behind her will of steel. She NEEDS her mama to gently guide her to a happy, healthy balance between her heart and her indomitable spirit.
My Renaissance Girl (15) already struggles with Sensory Processing Disorder, Auditory Processing Disorder, severe Dyslexia, and a myriad of other issues that she handles with incredible grace and maturity for her age. But she NEEDS her mama to continue to support and encourage her and protect her as she grows.
My youngest son, Doc, newly graduated from university at the tender age of nineteen and working to get into med school, takes the weight of the world on his strong young shoulders. He NEEDS his mama to remind him to live and laugh and love because life is not all work and responsibility.
My oldest daughter and her gentle hubby are pregnant with their first child. She NEEDS her mama for those middle-of-the-night calls from a first-time mother in search of wisdom and guidance, and she needs her mama to remind her that she’s doing a good job and that she’ll never be a perfect mother and that’s okay because she’ll always be the perfect mama for her children.
My oldest son and his sweet wife are expecting their third little one. He NEEDS his mama to listen and understand when he’s stretched and stressed and overwhelmed and to remind him that he is a good man and father and daddy when he feels like he’s not enough.
My kind-hearted hubby is the strength and bedrock of our family. He NEEDS his wife to grow old with him and hold hands and take walks and laugh at corny jokes and see beyond the inevitable signs of age to the young lovers who first made each other’s hearts race and now make each other’s hearts melt.
And this crazy, beautiful, messy world needs me, too. I’ve made it my life’s mission to ‘Change the World, One Little Heart at a Time,’ and I have not completed that mission, not by a long shot. I am not done. I have work to do, both for my family and for the world. I’m not going anywhere.
Peace and blessings, gentle friends. Ttys 🙂
Award-winnning author, L.R.Knost, is the founder and director of the children's rights advocacy and family consulting group, Little Hearts/Gentle Parenting Resources, and Editor-in-Chief of Holistic Parenting Magazine. Books by L.R.Knost include Whispers Through Time: Communication Through the Ages and Stages of Childhood ; Two Thousand Kisses a Day: Gentle Parenting Through the Ages and Stages ; The Gentle Parent: Positive, Practical, Effective Discipline ; and Jesus, the Gentle Parent: Gentle Christian Parenting the first four books in the Little Hearts Handbook gentle parenting series, and children’s picture books Petey’s Listening Ears and the soon-to-be-released Grumpykins series.