Some people have ice cold hearts, while others are warm and inviting. And then there are those whose hearts bleed gold. It takes the age old saying that someone has a “heart of gold” to an entirely different level.
If you are not aware, the universal color representing childhood cancer is gold.
Today, I met a man named Ronnie. He started Driven To Make Change. Before a couple of days ago, I hadn’t known very much about Ronnie and his heart that bleeds gold. He is a compassionate person, who – yes, has a heart of gold. His goal and mission in life right now is to raise awareness for pediatric cancer .
He’s driving across 48 states to learn all he can about all the pediatric cancers (139, currently known) and also to raise awareness. His hope is multi faceted. Not only does he have vision to raise funds for fighting cancer and finding a cure – he also seeks to take that deeper and further.
He wants to aid research into the why. Cause. Find out why or how (any environmental or otherwise) these cancers form. It is then that they become preventable.
It sounds like a pipe dream – but, I’ll draw your attention to medical history – so did the cause and/or cure for polio and other similar diseases. Let’s band together and turn this pipe dream into hopeful reality. Don’t tell me it’s not possible.
Why the passion?
I’m glad you’ve asked. My daughter Janet (Praying For Little Janet) was diagnosed with a rare (literally one of a kind) brain tumor at age four. She courageously fought brain cancer for three years, and passed away February 13, 2016. She is my why. My passion. My love. There is a giant hole in my heart that only she could ever fill.
She is not my only why .
There are so many people – so many families whose lives are turned upside down, in an instant – with two (not so) simple words: childhood cancer. To hear the words “your child has cancer” or “your child has a brain tumor” are game changers. They will (and should) change perspective and priorities in a huge way. Life as you know it will NEVER be the same “normal” again. Life will change. Death may happen. And that part so royally sucks.
They are now also my why. Every family who hears those words. I fight for my daughter, and I fight for all the families affected by pediatric cancers of all kinds.
My daughter died. My hope and prayer is that no other family, ever, has to endure this painful kind of journey.
Pipe dream? Not forever. WE have the power to change things. It will not happen overnight. But, it WILL happen. The key is, we must advocate for our children. They deserve so much more than the 3.8% of federal funding for pediatric cancer research currently alloted.
Please join me, Ronnie, and all those with hearts that bleed gold, in raising awareness and funds for pediatric cancer research (not only for a cure – but also to be able to pinpoint cause, and thus prevent the cancer) and share hope with the world.
To anyone who may read this – this is going to be a letter I write to my 7 heart old daughter Janet. She passed away three day before Valentine’s Day, 2016, after a three year fight with brain cancer. I have no idea how long this will be, but I have so much on my mind. You don’t have to read it – but do please feel free. I am not going to edit or even change grammar or spelling errors because, frankly, I don’t want to. I’m writing on/from my cell phone, and so God knows (and so do several of you) that I’m probably going to say any number of things that might not compute! I love you all. Thank you for being here. And for all you love, support, thoughts and prayers!
Oh, precious Janet! I love you so much, sweet girl. I will always and forever #RememberTheLove. Like I told you before you took your final breath this side of Heaven, we do miss you like crazy – like there’s no tomorrow! But, just like I followed that up with this then, I will now say that we are okay. The reason we’re okay is because we have each other. We still have you here with us, just only in our hearts.
I’m not going to lie – sweetheart. This has been the hardest I’ve ever felt. Some days are so much harder than others. You know what I’m learning? That’s just the way it is. I do know this, though. If you were able to, you’d give me a gigantic squeezy hug. You did those the best. You’d tell me it’s okay, and you’d wipe away my tears. I know this. Sorry. I’m just missing you.
I’ve learned so much about myself, other people, life, and even God. I think you’d be proud. I hope so, at least. God knows I’m also not perfect. But I know you’d remind me how much you love me and no matter what, that wouldn’t change. I said that to you all the time – and you picked up on or, and knew when to say it to me.
I’m so so sorry we couldn’t do more to save you. I know it’s not my fault. But I still wish. So much. I just feel so broken. My heart hurts so much sometimes. I hate this pain, and how much it hurts. But them I remember that it hurts so bad because we shared so much love. The love you shared with me will forever be in my heart.
I’ve been listening to a lot of music. I know how much music meant to you. It makes me smile.
Guess what else? If you were sitting beside me, I know we’d talk about this. I’m learning a lot right now, especially about God, and my faith. Also about love, and compassion – and this messy thing called messy grace. I learned so much about this thing called messy grace at an incredible place – a blog written by my friend Steve. There is also a really neat messy grace community Facebook group that are just a bunch of people that love people just where they are. That helped me too! They just love people really well, and they share so much of this messy grace with everyone. I mean it, Janet. EVERYONE! I bet that would make you giggle. Just all this talk about messy grace! Hehe.
I wanna tell you a little bit about the things I’ve been thinking about and realizing. I’ve been telling Jeremy and James this, so I’d tell you too.
I’m starting to see just how much God loves us. I’m finding out a lot about my own faith in God. I know, you’d smack my hand if I told you I wanted to punch God in the face some days. I’m not doing to lie, baby. It makes me so mad at Him sometimes because you weren’t healed here on Earth. But, I’m so so so happy that you got to meet Jesus. I know that even just hours before you took that last breath, you smiled because you knew it was almost time.
Anyway, I’ve decided to live my life in a little bit different of a way. I’ve decided it’s time to own my faith. What that means I’d I know what things I believe, but I just realized I didn’t always know why. Do you understand? I know you do. I don’t want to have what’s called blind faith. I just mean that – you know, when a person is blind, they can’t see. Well, I don’t want to believe things with my eyes closed. I want to believe them for myself – not because someone else tells me to. It’s more important than that.
One of the biggest things that my heart needs, and wants other people to understand, is love. Love can move mountains. I bet that would make you laugh – silly mommy. But live is such a big thing. I know you knew that though.
The world we live in right now needs so much more love. One thing going on right now is so many people aren’t showing people love very well. I know, you would ask why, and it would make you sad. Baby, it makes me sad too.
One thing going on is the LGBTQ+ community. I know, those letters sounds silly. What those letters are talking about are lesbian, gay, bisexual, transgender, queer, and the plus is for all the other things in between. Lesbians are when girls like or love and want to marry other girls. Being gay is like the same thing, but with boys who like other boys. Bisexual is when a boy likes boys and girls, and also if girls like girls or boys. Transgender people are people who feel like they were born in the wrong body. They might be a person who was born with boy parts, but has always felt like that was a mistake. And even sometimes girls are born with a vagina, but they always feel like they were supposed to be a boy. Queer is kind of hard to explain. Not really, I don’t guess. It just means anything but straight. Straight people are when a man loves a woman, or a woman loves a man. But, when a person is queer, they can like it love anyone. The Q also can stand for questioning. For a lot of people, there is a time when they start to question and explore who they think are nice and that they might want to get to know better and maybe love.
This community is in the news a lot lately. It makes me sad, and I know it would make you sad too. One thing that makes me sad is that people don’t treat people very nicely. I think you’d be super proud to help me with this next thing. I know how much loving people means to you. You would want to help me love people well. ALL people.
See, you know we go to church. I have figured something out, sweetheart. Not our church, but so many different churches aren’t doing very well in how they love people. I know, you probably can’t understand that! It’s crazy! Cause, God wants us to love every single person – even if they look different, or live different, or if they marry differently. But so many people don’t love people like that. They only love the people they understand. It makes me sad about this LGBTQ+ community because they are very special too. The Bible does talk about homosexuality (that is when two people who are either both boys or both girls love each other and want to be a family) and says in some places that it’s wrong. A lot of churches even tell them that they can’t be a Christian because of the way that they love people.
I’m going to tell you this. I don’t really believe that’s true. I know there are a lot of people who may not like that I say that. And they may not believe it. Some may even get mad. But, I think they can come to Jesus and all Him (like you did) to come into their heart and be a part of their life. What happens after that is between that person and God. I’m not God. (I know! That’s funny for me to say!) But, I’m not Him and I can’t really tell you how He will act or react. But what I do think is that He will love them very well. You know how I feel about God, and when people want to know Him more. He welcomes people right where they are. That is what I think.
I want to help people, all people, even in the church to love all people well — not just the people that they agree with. See, I’ve told you this so many times. As people who love Jesus, (we call them Christians or Christ followers) we are asked (by God Himself) to be like the hands and feet of Jesus. Kind of like if Jesus was here, we should act how He acted. Even to people we don’t think deserve love. When Jesus was alive as a person on the earth, He would be deleted with so many people. He loved people well. He would even hang out with really sick people, people who would break the law, and even really mean people. Just like I told you a lot, Christians need to act like Jesus because sometimes we’ll be the only Jesus they might ever see. We need to act like him, and treat people like He would. It makes me so happy when people really do that.
So, I just think everyone, even and especially Christ followers, need to be known by how we love people, not by all the things don’t like. It’s all about the love, and I hope so many more people can start to #RememberTheLove. With ALL people.
Janet, I love you more than The World – to the moon and back. Your Daddy, James and Jeremy also miss you so much. We all do. People we’ve never even met love and miss you! Oh, and I was looking at some special notes that your friends from school wrote to you when you were here, and even some notes from every single kid in the first grade work you. That miss you so much too! Evie. I know how much you loved her. I do too. Her whole family is just amazing. Every time I see Evie, I get a great big squeezy hug. She always tells me how much she loves you, and misses you. Do you know how happy that makes me? I’m so happy she likes to give me hugs. Oh, did you know, she cut off her pretty long hair so she could donate her hair to another little person like you were. I know why both of you got along so well. I hope that we can stay friends with her whole family, forever. Me and Jeremy got to go with her to get her hair cut. I will share pictures here after I make sure her mommy doesn’t care.
You always knew how much you were loved though. So these special people like here in your page (who I love so so much too) also pray for our family all the time. I know I’d make it somehow, but you being in Heaven is even bearable because of all these friends and all the people who love us, and who pray for us. I know that makes you happy too!
I guess I will stop writing now. I want you to know how much I love you, and I always will. I miss you, baby – but I’m smiling now. I’m so happy that even though you were here with us on earth for only seven years, I’m so proud to be your mommy. You James and Jeremy make me so happy. I’m smiling right now because I remember so many really happy and special times. I love you! Forever!
I think this title is self explanatory. I also believe that it needs explaining. To make this very real and expose a few more of my own emotions, I’d like to share a bit about our personal journey – about the pain, loss and love.
As yesterday’s post made it painfully evident, my daughter has passed away. I can barely utter these words, let alone write them. That said, I want to concentrate on an idea that resonates deep within me.
Our pain wouldn’t exist if we hadn’t first loved. Where there is great pain, there is a great volume of love.
It’s true. I loved my daughter with more words than are in existence. As such, I grieve her passing with more pain and hurting than words as well. The life she lived – though short – was incredible. And full of love. If you were to ask 100 people who knew Janet what the first thing that comes to mind when thinking of her, at least 90 of them would say her smile. This child loved and breathed happy. No matter what she faced. This was made possible, in large part, due to love. She was surrounded by love, and made it her life’s mission to also love others. It is that love that makes her absence in physical form that much more painful. We love her, and we miss her. However, her love yet remains. It always will.
At what became her final moments of life here on Earth, she had many very profound things to share. She knew that people would be sad, but didn’t want them to stay in that sadness forever. Instead, she requested that everyone Remember The Love. And, though it is also etched with pain, remembering that love is our life’s mission. Love others. Be loved. Be the love our world needs. Yes, there will be pain – but it will be matched with love. Allow that love to lead and guide you instead of the pain alone.
If the truth is known, I have no idea even where to start. I came to realize it has been a long time since I have shared here on this page. Too long. Over a year. As such, I also know it’s not wisdom to make some promise to write every day, or heck – even every week. Though I might do that, I reserve the right to also say that I might not. What I do know is that I have missed sharing life with you. So, as such, I want to share where things are right now. This may not be a very long post today.
For those of you unaware, my life and my family’s lives were thrown upside down about this same time, three years ago. We were notified that our little Janet (then 4 years old) had an aggressive brain tumor. Three years ago, our lives changed. For three years, she courageously fought a disease that would eventually claim her life. Yes, her life. At 7 years old, my little girl breathed her last breath this side of Heaven. She passed away February 13, 2016 – just over two short but excruciating long months ago.
Truth be told, much of the previous year was dedicated to fighting childhood cancer alongside her. Now that she is gone, that fight is far from over. I proudly stand with others who are fighting, rejoice with those who have finished treatment and live to share their stories, remember the heroes who have their ultimate and eternal healing, and pray for all who stand beside them. None who walk this path are alone. This is a fight that I continue to fight – not just because my daughter died – but also to help ensure other families do not have to walk this same heartbreak.
If you have played a part in our journey – whether small or huge – know that you are greatly appreciated. Please continue to share your love and support – your thoughts and your prayers. They sincerely mean so much.
I am going to do something different this evening. I am just going to write. I don’t have anything specific on my mind, or that I need to get out, so to speak. So, I am just going to write. Unedited. What you see is direct from my brain. Buckle up and enjoy the ride!
One of the biggest things on my mind right now is life. Life, in general. I have a lot of time to sometimes just sit back and ponder the meaning of life. I sometimes wonder if this is all there is to life, and it bothers me. Then, I might feel a little bit guilty. Why? Look around. I have a husband and three amazing children – not to mention a multitude of extended family – and a network of amazing friends. It takes thoughts like that to remind me that I am surrounded by so much love. Life indeed does suck sometimes. There is always more to life – but even if there isn’t – what I have right now is pretty special, and worth truly living for.
Living. There have been days recently where I’ve just wanted to pull my hair out. Truth be told, that might be a little difficult right now, seeing as how I recently shaved it in honor and support of my daughter who is six years old – and bald, fighting cancer. But, back to my recent crazy days. There have been moments where I have been feeling quite overwhelmed. By everything. Coping with life. Coping with her having this returned cancer. Dealing with feeling inadequate to handle everything.
It’s then that I realize that I DON’T have to handle everything by myself. I don’t. You don’t. NO ONE SHOULD. You see, there are multiple factors I have on my side, making life more than worth living.
First, I have a God who is larger than life. For some reason, He loves me. He always has, and He always will. The neat thing about that is that I haven’t done anything particularly worthy of Him. Just because I am His child – that’s why He loves me. It’s an awe-inspiring thought. To know that I can not do everything right, make mistakes and just not live life “perfectly” so to speak, and KNOW that He is always going to be waiting with open arms…that is powerful to me. To just know that no matter how broken I may feel, He is always ready and willing to pick up the pieces and create a masterpiece. He is someone who understand every single part of my life. The good and the bad. The ups and the downs. He gets it. And, He loves me.
Secondly, I have family. I’ll talk about friends in a minute, but first I’m going to share how blessed I am. I got to thinking what life would be like if I weren’t here. No, this was not me contemplating suicide, it was me taking myself out of the equation, and wondering how things would be different if I just ceased to exist. Let’s talk about that precious child fighting cancer. I’m her Mama. There isn’t anyone else in this world who can play the role I do. I am with her every step of the way. Her Daddy is too, but I’m primary when it comes to taking her to appointments, blood draws, etc. I don’t resent it. It makes me happy that she needs me. Then, there are my boys. They are tremendous. I love that we have an open line of communication. There is not any topic that is barred from conversation, and they know it. I would like them to be able to talk to me about anything. I want to be a part of their lives, not a distant dictator as a parent. I love my children more than I can put into words. Then there is my husband. We have been married longer than we have a teenage boy alive. Things haven’t always been perfect in our marriage. There have been times I have questioned so much. However, though not perfect, always worth fighting for. God has given me a love for this man unlike anything I can put into words. Even through tough times, I have never forgotten the initial reasons that brought us together, and the love that connected us in marriage.
After family, there are friends. You know, some friends are as close to me as family. Friends make me smile. I’d like to take a moment to talk about people both online, that I’ve never met – and that I may not ever meet in person, and people I know in real life.
Don’t EVER think that “just” online friendships are worthless. They mean so much. No matter what, online relationships are very real. I’ll talk about them first. Through online platforms, Twitter, Facebook and my daughters prayer and support page (also on Facebook) I’ve been able to connect with people all over the world. Literally. All over the world. That’s neat. Just connecting with other people is important. Creating friendships “across the airways” has been incredible. There are people on my daughter’s page, for instance, that I value their friendship so much. They have shown so much love and caring. They take the time to let her know, and to let me and our entire family know that we are loved, and that they care how she is – and how we’re all doing. It puts a smile on her face, and on mine to see people comment and just surround her with support and love. There is no question in her little head that she is loved. I wouldn’t trade that for anything.
Real life friends. I also know I couldn’t do life without them. One very specific place I’m surrounded by friendship is at and through my church. From the moment I walked in the doors the very first time these three years ago almost, I felt truly at home. I walked in the front doors with lots on my mind, and weighing on me personally. Like I have said previously, I am diagnosed bipolar. I say that to just say this. I was not at a great place, mostly mentally, when I first started going to my church. However, I was welcomed with open arms, with no judgement, and regardless of what my story was. That, my friends, was life changing. Because of the welcoming atmosphere, I was able to connect – both with the people, and with God. Even at the beginning of this fight with childhood cancer and my daughter, I knew they were with me. They freely admitted that no one at the church had gone through this, but that they were going to walk with us through the process. They have done just that. In short, they have been friends. True friends. Through all that makes up life.
Speaking of connecting with friends, I’ve mentioned how I’ve recently felt quite overwhelmed. It’s almost as if all the emotions that come along with being bipolar and having a kid fight cancer – as if all the emotions of these two things have combined forces from years previous and come back to sneak up on me…saying, “here I am…deal with me now!” It is during these times that I have learned the value of reaching out. I haven’t always been one to reach out. I’ve been one to hide, keep to myself, and not let anyone else in. Why? I don’t want people to know the “real” me for fear of what they’ll think when and if they find out what makes me tick. I’m learning that if someone thinks negatively about me after knowing who I am, then fine – I didn’t really need them anyway. That may seem harsh, but it’s true. If someone can’t accept you for who you are, you can’t go and try and change yourself to fit the mold. Doing that will just chip away at you, taking more and more of you with it each time. Be you. Be transparent and be authentic. Doing so isn’t always easy. It’s vulnerable. But, it’s worth it. Creating relationships based on reality is worth it every time. Like I said, during the times where I’ve been feeling overwhelmed, I’ve learned the value in friendship. In calling someone and just saying “I’m not okay” or “I’m hurting. Would you please pray with and/or for me?” That’s hard to do. But, it’s necessary. At least, it is for me. If you’re honest, you’d agree – you need to always have someone by your side that you can call on to just say that things aren’t going okay right now.
As such, it has become imperative for me to remember that it’s okay to not always be okay. I am a Christian. Which is awesome. However, accepting Christ into my life to lead the way doesn’t mean that suddenly life will be a bed of roses, with no troubles or struggles. No, just the opposite. It means you are human, but even so, God will give you strength to walk through whatever life throws your way. I know this to be absolute fact. It’s just that sometimes I don’t always keep my eyes on Him and Him alone. Through the struggles, I see myself, and my own inadequacy. Of course I’m inadequate. I wasn’t created to do life alone. I wasn’t created to do life without Him. I truly believe that God created us to be community people – to not walk through life alone.
I guess I needed to write all this for myself as much as for any of you who have taken the time to read. I want you to know this. You are not alone in this world. You don’t have to be alone in anything you walk through. Know that. I want you to remember all these things I’ve needed to remind myself of. No matter what your situation is, you are important, and your life has value. Even when you can’t see it, look around you. See the people you interact with, and that count on you. You may not be able to see it, but your impact is great. More people than you realize love and support you. You may just need to allow them to do so. I know people have constantly wanted to help me, and to just be a friend. It wasn’t until I was able to reach out and just be real – authentic – transparent, that I could see true and deep friendships. I encourage you to do the same. You are worth it. Your story is important, and it is still being written.
If you have made it this far, know I’d love to hear from you and know what your story is all about. If you are feeling alone, or just need a friend, feel free to reply in the comments or to connect through the “contact me” page. Even if you are having a great day and just want to remind the world to smile, feel free to connect. I also want to say that I value your thoughts and prayers. Clearly this isn’t the easiest time in my life. And that’s okay. I’m not doing it alone thankfully. Thank you to everyone who will take the time to pray. It means so much. Let me know how I can pray with and for you as well!
To anyone reading this, I want you to know this is going to be a transparent look at the way I think. My reality is an interesting one, and I have had a lot of opportunities to examine just how I relate to God, and to what makes up the reality of life. The overall theme of this entire blog is where faith meets reality. I’d like to create a word picture and share my heart on how this looks in real life.
If you have followed this blog for any length of time, you will know two are true about me – I have been diagnosed (years ago) with bipolar disorder, and my daughter is fighting a rare and aggressive brain cancer that once was gone and has now returned, having returned and metastasized to multiple locations down her spine.
Alone, either of these things provide enough reason to question God, and ask a multitude of questions. Together, however, things can be unbearable at times. It’s what happens during these times that define how I see the world, and even how I react to the world around me.
Let me level with you. Things have not been easy lately, incredibly difficult at times even. How do I respond though? I recognize that the God I say I know and love truly is in control. I continuously strive to do things and live within His will – knowing it is the perfect place for anyone to be. The thing is this though. His will and my will are often not the same. They may differ only slightly, or there may be huge differences. The question I always have to look at is if I truly believe the things I say about Him. This is the place where the virtual rubber meets the road.
As for me, I make a conscious decision very regularly to remember these things I have come to know as the truth. I know that God is still good, that He is still in control (even when I’m not), and ultimately He IS in control.
Let’s talk about bipolar disorder for just a moment. That is a title, a label that describes why certain things are the way they are for some individuals. Things are difficult to imagine, unless this is something you have personally walked through in some capacity. I recently heard someone I love and respect say “these people” referring to people who deal with mental illness, bipolar disorder specifically. It was a negative connotation stemming from personal experience with someone who chooses not to take care of them self, and in so doing hurt innocent people who surround them. Being lumped in with “those people” initially bothered me. However, it also made me realize that there is something altogether different about the bipolar person who doesn’t care, and the one who does. That alone is one reason I choose to take care of myself, and to seek help when help is needed…and believe me, it IS needed more often than I’d like to admit. However, as such, it’s okay to not always be okay – it’s just what I CHOOSE to do, or to surround myself with, during these times that either breaks me down or builds me up.
This is the same concept that goes hand in hand with watching your own child fight aggressive cancer not once, but twice at this point. It hurts, and the emotions that go hand in hand with this are unimaginable. People often tell me they cannot imagine what we go and walk through just daily. That’s good. I don’t WANT people to have to understand.
Imagine being told that your child has cancer. That’s difficult, to say the least. Imagine, then, the joy that goes along with hearing that the cancer is gone – no evidence of the disease. Imagine the cancer being gone, and treatment being complete. There is unimaginable joy that goes along with these scenarios, let me tell you.
However, try to not understand the emotions that go along with hearing that the cancer is back, this time having spread. Add to that, that one part of treatment is aimed at curing the disease, while the follow on part of treatment is aimed at being more palliative in nature – helping her live with this as long as she can. That, my friend, it’s a hard thing to hear, hard facts to swallow.
Where does God and my faith come into play here? It all goes back to that moment where I either trust God, or I don’t. I recognize that, without a miracle that only can come through God’s hands, my daughter’s long term survival isn’t fully expected. It’s hoped for, but in medical eyes, Just not a realistic expectation. I know, without a doubt, that God can supernaturally heal her – with or without medical treatment.
I KNOW that He is able. However, for whatever reason, He doesn’t every single time. I’ve walked this road with other families who have children who have valiantly fought but completed their fight on this side of Heaven. They die before they’ve had a chance to really live life. Watching other families – ones filled with incredible faith and never-ending hope for healing (while on earth) for their child – is incredibly difficult. To know that God is in control, and that He has the capability to heal – but doesn’t always doesn’t make it any easier when He doesn’t. For whatever reason, God’s plan often doesn’t look the same as the plan we’d choose if given the option. No one would wish death from cancer on anyone, let alone an innocent child. However – the reality is that it does happen…and more often than anyone realizes.
The fact of the matter is that God IS still good, and He still loves me (and you) when it’s hard to see or to feel it. To realize that He is in control and that His plan is the best isn’t always easy, but it IS ALWAYS worth it.
I will not ever stop praying and hoping for total and complete healing for my daughter – and for all fighting cancer – until there is no longer a reason…until cancer is completely cured once and for all, or until she is in Heaven – – at which time I will forever seek that cure for others. I will never give up the faith that God IS in control, and my prayer will remain that this whole situation is in His hands and that His will is for her to live a full life, one completely free of any cancer or disease. That is, and will remain, the reality I hope and pray for for her…and all the others fighting this monster. Thank you for being alongside us on this fight.
If this post has spoken to you – for whatever reason – I’d like to know. If you just need a friend, or a listening ear, I’d be honored to play that part in your story. Please feel free to post below in comments, or to message me through the contact me form. It’d be an honor to connect.
Similarly, I am sincerely grateful to each and every person walking with us on this journey, even when it’s just plain difficult to walk. For all the kind words, and all the prayers, I’m forever grateful.
My daughter has such heart. She has a joy and just the positive spirit that she takes with her everywhere! This little girl has a smile that will light up any room. Her no-nonsense and innocent look at life is heartwarming beyond words. Children, especially those fighting big battles, just have a different perspective than anyone else alive does.
With all this said, I’d like to fill you in on some of the details of our recent history.
As you may have heard by now, our little Janet’s cancer is back, and things don’t look good in a lot of areas. First, I am going to share all that with you – then I am going to tell you were we stand on everything about to be mentioned.
We all knew that it was a possibility that her cancer could one day come back. No one, and I mean no one thought it would so soon. Dealing with a recurrent / metastatic cancer is not good. Learning that she will endure cranio spinal radiation for over a month (every weekday) is also not fun. The follow on treatment will be an outpatient chemo therapy regimen.
Let me explain her treatment plan. For four and a half weeks, Janet will undergo radiation therapy. This time, there will be mostly proton beam radiation, with “normal” radiation a few times. There are said to be normally more side effects with this because a different type of radiation, as well as a larger part of her being treated. The goal of hre radiation is to shrink and make disappear the tumors… also to preferably kill their opportunity to every even possibly return.
After radiation, the protocol is that she will go through an outpatient chemo therapy regimen. This will include daily (Monday through Friday) outpatient chemo. One week. Then, she’ll have approximately 2-3 weeks off, and then do the same thing again. Aside from that, every two weeks, she’ll have a one hour outpatient chemo administered – separate from the others. As I have learned, this chemo therapy regimen is more aimed as being palliative support, or a quality of life kind of thing – as versus curative.
If you’re like 99.99% of everyone else reading this, you may be wondering about alternative protocols or treatment options. You may have suggestions on where else we can seek treatment on behalf of our little Janet. I want you to know, we have gotten multiple second opinions – from the nations leading hospitals and have involved the nation (I’d say even the world’s) top medical minds in this situation, and in her care – simply because her tumor / cancer IS one of a kind. Nothing like it exists in the world. I spoke with another hospital again today, and heard the exact same news as all others have said – St. Louis Children’s Hospital has her with a protocol they’re comfortable with, would recommend themselves, and has state of the art equipment. There are other alternative therapies that we are also looking into, just to ensure we do all that we can to help our little princess do her best.
The entire point I am making is that we have faith and confidence in Janet’s medical team here at Children’s. Never did we doubt them. We sought second opinions just to ensure everyone was on the same page. We do NOT like the page everyone is on, but there is a certain amount of peace knowing that the medical minds agree – as to both what we’re looking at, as well as treatment options, etc.
Now, with all that said, I want you to know that we have not given up – and we will not EVER give up. In fact, we KNOW without even the shadow of a doubt that our God is greater than ANY cancer, any tumor, or any issue Janet faces. Regardless of what the situation looks like, we KNOW that God IS in control. His hands are clearly seen in just about every aspect of this journey. That’s not to say that Him being in control makes it any easier to deal with — but it does make it easier to walk through. We don’t LIKE the situation Janet is in right now, but we do trust God 100% with her situation, and her very life. All of our lives. Her life, and her battle with cancer is part of a bigger story – one bigger than her, than us, or than anyone can imagine. I have that faith. What exactly that means, I do not know. However, I do know that I am grateful to have the strength that comes from the living God we trust. I do not know what tomorrow will bring, but I refuse to allow the fear (like I’ve said before) to rob and steal the joy from today.
For those of you inclined to pray, know that your thoughts and prayers are valued.
Have you heard the age-old saying “When life gives you lemons, make lemonade” or have you been fortunate enough to not hear that comment at every turn – especially when life isn’t so awesome!? Don’t get me wrong. I believe this statement is a good thing to remember – to look at the bright side, and not always dwell on the “lemons” that life hurls towards you.
I’d like to share somewhat of a life update, and give you a very practical update on how you can enjoy the tasty lemonade, even in the middle of sour lemons!
For those unaware of our family situation, my daughter has battled a rare and aggressive brain cancer. She had a brain tumor that was surgically removed, and then followed through with six weeks of daily radiation. After the completion of radiation, she underwent a high dose chemo therapy regimen. We’re ecstatic to say that our five year old daughter has completed treatment. At the end of treatment, her MRI/scans showed no evidence of the disease. She was deemed “cancer free” and we celebrate! We have scans coming up in two weeks to verify that she remains cancer free, and no recurrence.
Watching my child fight cancer has been the single most difficult thing I have ever walked through. As such, I have also learned to CHOOSE to see the good in things…to see a bright side in a dark room. So, let me share a little story with you.
As a “cancer kid,” my daughter was connected with Make A Wish. She was given the opportunity to make a wish. She could dream big. Her wish, like so many other little kiddos, was to go to Disney World, and to get the opportunity to meet the “real” princesses. We actually just went out of town last week for Janet’s wish trip. We did not post openly, or share online until our return. We were not trying to hide anything, but rather security conscious. We opted to not share openly so our house wasn’t a target for those who would seek to do harm. We are back now, and updates – we have plenty! This post, in fact, will be a summary of how things, even amazing things like a wish trip, can sometimes not go as planned — and how you can make a conscious decisions to make the lemonade instead of sulking and drowning in the sorrows of what could have been.
I would like to take you back to the day we left. That day started off magically. Our family was picked up and escorted to the airport in a limo! The awe of it all was precious to watch. The amazement in the children’s eyes was priceless. As we were whisked away, we just enjoyed the moment. We were all together as a family, and were at the beginning of what was pegged to be a magical vacation. As we got to the airport, but before boarding the plane, we noticed a small rash on one of our son’s wrists. Nothing big, but we kept an eye on it. We thought perhaps there was a couple of bug bites. That’s all it looked like. By the time we arrived in Orlando, it had spread a bit. As we checked into our magical village, Give Kids The World, we noticed it had continued to spread. The only troubling factor was that it spread all over his entire body, the palms of his hands and soles of his feet included. That evening, we contacted his pediatrician, and were urged to go to the local emergency room. So, we went to Arnold Palmer hospital for Children. Thankfully, we met some amazing and kind people. But, true to form as it seems to go with our family and medical “issues” – they were a little bit baffled by what was going on. His lymph nodes were a bit swollen, but that was chalked up to a recent strep throat infection. He’d been on antibiotics, and initially they thought a possible medication reaction, but that seemed to be also incorrect. They made mention of leukemia and also Rocky Mountain spotted fever, but said both were extremely unlikely, as there wasn’t other tell tale symptoms accompanying his rash. They also said it would be pointless to test at that point, as he’d so recently had the strep infection. We had four different doctors, and three separate nurses come by to check him out. They were baffled, but weren’t overly concerned. That said, there wasn’t much they could do, but did give us benedryl and send us on our merry way. We were told not to go out in a whole lot of public places for at least the next day or so, and until his rash started getting better not worse. So, that is what we did. We kept him home while his sister and brother went out and about and did a few things. We had some good time to bond, and just rest and relax together. While that started our trip, that would not bring us down.
The weather. We anticipated Florida being hot and sunny. We definitely got the first half of that equation. From the moment we got off the plane, we noted how muggy and hot it was. We also surmised it would likely rain or storm soon. What we didn’t know was just how much of our trip would be covered by this kind of weather! That first evening, we had a severe thunderstorm warning, along with a flood warning. We remained safe, but that was not the most fun time ever. When there was a break, I took the munchkin (Janet’s brother) to the hospital. That next morning, she and her brother went with their daddy to have some fun. There was a playground that is a life sized Candy Land play area. They were very excited to go there, but unfortunately it was closed due to inclement weather – previous, and evidently what was to come. So, they had a variety of other mostly indoor fun.
The next day was pretty much a repeat of that first day, weather wise. There were severe storms, and lots of lightening/thunder. At this point though, we were determined to not allow the weather to get the best of us. Jeremy’s rash was looking better as well, and so we made the trip to the Disney parks. We went to Epcot to start our adventure. Unfortunately, a decent amount was closed due to the weather. This, however, would not stop us from having fun and making those special memories. We had a blast, and got to experience some pretty cool Disney magic. Again, the weather prevented some of the attractions from working. A show or two were cancelled because they were solar powered, and there just was too much cloud cover to allow for enough energy and such. No worries, we’d still keep on keeping on! That evening, we made the decision to stay until the park closed, and watch the light / fireworks show. That was spectacular. Thankfully, the weather held off long enough to really enjoy that, and to get back to the vehicle. The light show mixed with the beautiful fireworks were awesome – and just the perfect mixture of fun to put a kid TO SLEEP!! Janet was out like a light – for the majority of the show. She was exhausted. Her little body isn’t used to so much activity. She was okay, just tired. We did take lots and lots of pictures, and video recorded the entire thing. We will watch it with her later. She seemed just fine with that idea!
The next day, and for the three days that would follow, we had more storms and rain. Lots and lots of rain. In fact, the first day we saw the sun peeking out of the clouds was the day before our departure. Not to worry. We learned to sing and dance in the rain – literally and figuratively. We went to Downtown Disney. Janet went to the Bibbidy Bobbidy Boutique, where she had her makeup and nails done, and was transformed into a little princess. Her princess makeover also included having her hair done. Well, she was concerned because she has virtually no hair. That was not a worry, however. The fairy helpers were so kind and had the perfect wig to complete her beautiful new look. She got to be princess Aurora as Sleeping Beauty. To watch her excitement through the process brought (happy) tears to my eyes. She knows without even the shadow of a doubt that she is beautiful, inside and out — and that hair isn’t the make or break point in being beautiful. She did, however, quite enjoy the wig and new look. She enjoyed the glamour and excitement of being a princess. She got to wear her wig, new dress and wand around for all to see. She even perfected the princess wave. That lasted for approximately ten minutes – until the wig was scratchy, and she wanted it off. No worries. She was beautiful beyond words, and was having fun. From there, we got to go run through the rain for a Disney princess photo shoot! We could have complained because of the crazy amount of rain, but we opted to have a good time, despite the stormy weather. She had her pictures taken without the wig, and was so happy to do so! After all, it captured HER right now…at this moment…with the fuzzy new hair she’s currently sporting.
From there, we went to a glamorous lunch. Well, that was the theory at least. In reality, it was overpriced, overcooked and not worth it. However, it was Disney, and we weren’t going to let over-priced less than exciting food ruin the rainy day. Instead, we let the kids get special drinks (Italian sodas for one, chocolate milk for one, and cranberry juice for the princess) and just enjoyed each other’s company.
The next day, we went to Universal Studios. We figured that would be a great place when the weather was still supposed to be rainy. We were told most of the attractions were either inside or under cover. And they were. It was the distance BETWEEN them that made us realize that it may or may not have been the best option. It was fine, however. We got to go on several rides and saw several attractions. There will be lots of pictures and videos to come. There were only a few rides that we took that Janet could not ride, due to being little. With this said, it was likely for the best because she’s too young to enjoy or not be scared by some of them anyway. We were able to just relax and spend time together as a family.
The following day was spent at Disney’s Magic Kingdom. One thing that I was determined we’d share as a family was “It’s a Small World” ride/attraction. I did that with my family when I was very little, and I wanted to share this magical experience with my own family. So, that was actually the first thing we decided to do at Magic Kingdom. We boarded the boat, and had a thrilling and relaxing little adventure. Janet lit up, and was in awe of every part of the ride. Her brothers even had a great time! When she was looking one direction, and her brothers thought she was in danger of missing something – they’d make sure she turned to look. We have lots of pictures, and also video from that experience as well. From there, we went to the big carousel. She and her brothers all wanted to ride a horsey. On our way to the entrance, we ran into a princess. She met Janet, and learned that we were there for her Make A Wish trip, and she took us just across the patio area to a very special spot – with the Magic Kingdom castle as a backdrop. That was neat. She had an onlooker use my phone to capture the picture, so I could be IN the picture WITH the kiddos. That was so neat. We then rode the merry go round. From there, we went to the Princess autograph and picture taking adventure. Janet got to meet the princess from Frozen, as well as Aurora. It was very neat for her, and for all of us. Pictures, of course, are coming! We went on lots of rides that day, and spent much quality time together. The kids all really enjoyed both Thunder Mountain and then Splash Mountain. After that, and to conclude our fun for the day, we took the train back to Main Street, so as to experience seeing the park from the train as a vantage point. That was also a neat experience.
Walking. Together, we did lots of walking. (We did have a stroller to use for Janet, and she was allowed to have her stroller function as a wheelchair when needed because she lacked enough energy to do a full day of fun, much less walking.) That came in quite handy, truth be told. There were times she wanted to be strolled, and there were times she wanted to be held/carried. There were not that many times that she actually wanted to walk. That was okay though…we took turns holding her, or letting her ride. Through it all, we were grateful to be there, and for the opportunity that had been afforded to our family.
Our final day, we had a flight late in the day, so decided to make one more adventuresome day. We went to Sea World. Though we didn’t have a full day, we got to see dolphins and flamingos. In all honesty, we weren’t able to go on a lot of rides, as Janet was too small for much of it, and we didn’t want to be drenched. So, we just enjoyed the surrounding area of the park, relaxed at an underground cove, and watched dolphins from below ground. That was a really cool experience.
Sadly, it was time to head to our departure. I wish I could tell you that it was an exciting time. The airlines welcomed us as a Make A Wish family, and that was neat. We had help when needed, and finally got to our gate for departure. As soon as we took our bathroom break, and got to our gate, it was time to board. We boarded and got comfortable. One disappointing thing we discovered when we landed was that one of our carry on bags had been misplaced, and likely left at the departure gate in Orlando. So, that was lovely. It was an important carry on, and included the kids and my medications. Thankfully, we have extras, and have filed the report to hopefully be reunited with our missing bag soon. We’re hoping this is a quick process. There were meds, kids toys, and some spare clothing in that mix. After baggage claim, a nice man greeted us, and took us off to the limo. We completed our Make A Wish trip with a limo ride home. It was beautiful, neat, and overall – amazing. We weren’t happy the magical trip had concluded, but were extremely happy to see our home.
That was until we walked inside. It was fine…or at least seemed that way. As we flushed the toilet, and attempted to refill my water bottle. It was at this moment that we discovered that the water had been cut off in our absence. We had made the payment online, and instead of that working, it evidently hadn’t gone through after all. So, yeah – that was a lovely welcome home surprise. Again, it was another opportunity to sip on the freshly squeezed lemonade. First thing this morning, we contacted the water company, and needed to go in person to make the payment. They assured us it would be turned on quickly, and apologized for the welcome home the way that it was! It wasn’t a bad transaction, and connecting with them wasn’t a hard process. It was annoying to have to go through, but hey – now we have water again. As we were trying to get them paid, we noted that the card we were using was denied. It turns out that having fraud protection is a great thing. Since there was questionable activity (we traveled outside our home and adjoining states) our accounts were temporarily frozen. I do say it was good to have this, because we realized that if our stuff had actually been stolen, having that protection in place is priceless. Just not when trying to get life back to normal, and payments processed! Not to worry, we did get that all taken care of. Now we have water again!
What was truly beautiful was watching our kids have fun – together – without the worry or concern of radiation, chemo or a hospital stay. Just watching my little girl, and her brothers be KIDS…kids being kids….that was and is priceless. So, while life gave us lemons, we enjoyed the lemonade.
I’d like to personally say thank you for the continued thoughts and prayers surrounding Janet, this trip, and our entire family. We are sincerely grateful for each and every person who connects with this blog and also Janet’s Facebook page. (Found at http://www.facebook.com/prayingforlittlejanet)
Something I continue to talk about is not being alone. This journey is so much easier to walk through knowing there are others who love our four year old (and us) and care. From the very beginning, I determined this is nothing I was willing to do alone, or to allow her to do alone.
As such, we were blessed to be able to connect with an organization that reaches out to cancer patients of all ages. This organization, Phil’s Friends has been instrumental in blessing SO many people, or family included. Phil, who started Phils Friends after his own fight with cancer not once, but twice, has a heart of gold. His testimony is such an inspiration to us. God’s love and peace was so much a part of his healing, of his story, he started this organization with the hopes of reaching others who are struggling with this. His faith was strengthened through this process, and he aims to share the same strength and hope with anyone through this organization.
A few weeks ago, Janet received a care package from Phils Friends. I posted pictures at the time. It came at the perfect timing. In the times since, we’ve aligned with this organization to help them share hope in any way possible. They have brought Janet (and countless others) so many smiles. Smiles do a body good!!
Anyway, that said – Phil was in town with his family this past weekend. Janet and I had the honor of meeting him and his family. There were hugs and many smiles. In the picture, you’ll see a semi-funny picture not seemingly related. It just shows Phil’s heart. My air was low in my tire, so he insisted that he help me – as he wanted to make sure we were safe. So, he helped out. So, I had to take a picture. Anyway, Phil actually brought a special care package for Janet to give to one of her special new friends at the hospital. What better time, cause her next inpatient stay starts tomorrow!
I would consider it an honor if you would repost and/or share this with anyone in your sphere of influence. Go to their page, like it, and let them know we sent you! More than that, let others know about them. You can find out more at their website as well. If you aren’t local, they will mail care packages out. If you know anyone who could use some love and hope, please connect them with the page. If you feel inclined to sponsor or help in any other way, please also connect with them. If absolutely nothing else, please pray for them as they reach out to others.