Tag Archives: brain cancer

The Date That Would Alter Realities

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 This is the face of hope…of courage…of faith. This is my beautiful, then 4 year old daughter, Janet. Until this day, she had never had a hair cut in her life. Cancer treatment would take her hair away, and eventually her life. But, the smile you see here – it never really faded. She had a smile that could melt an iceberg.

This day in history. On some calendars, it is merely but a day. On mine, it will forever mark the day (four years ago today, if you’re reading this in 2017) – that our lives changed forever. It was this day, 2013, that our sweet little Janet was diagnosed with a brain tumor. That was the day that life as we knew it – it would never be the same. The normal we once knew, would never be heard from, or seen again.
 
From that day forward, however, we would also learn an indescribable love.
Yes, this journey would become not a sprint, but a marathon. A journey of epic proportions. A journey so painful, it is hard to breathe some days…but so full of love. It would be the beginning of our journey fighting childhood cancer alongside Janet. She was so very loved, and never alone — and knew both of these things to be truth.
 
With all the love in the world, it’s still a journey marked by intense pain and heartbreak. This day, 2013, she was diagnosed with a brain tumor…and three years later, she would breath her last breath this side of Heaven. Friends, I hate the fact that this is our reality. It shatters my heart, and I wish with everything I am that life wasn’t this way.
 
But, it is…and here we are. Continuing to breath, and continuing to have a heart that beats. I made some statements and promises to Janet just before she died. I told her that we were going to miss her like crazy, like there’s no tomorrow…and that it would hurt when she was gone, but that we would be okay, because we’d be together. I did tell her that we would ALWAYS #RememberTheLove. And, that is a promise I will never break.
 
For those of you following, and who share love and support – and also prayers, it is with heartfelt gratitude that I say thank you. Please, please don’t ever stop.
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The Heart That Bleeds Gold

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Driven To Make Change

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. 

Preventable cancer!?

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. 

#RememberTheLove

Have You Been To A Concert That Rescues And Saves Lives? 

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This is a picture taken at a concert that began with “For His Glory” (which is more than just a band, and then followed by “The Great Romance” – who already held a very special place in my heart.

Have you ever been to a music concert that saves lives and rescues people? I have. Two nights ago. 

I had an opportunity that had my stomach in knots. A concert. No big deal,  right?!  In my case, not right. Let me explain… 

My daughter passed away in February after a three year battle with brain cancer. During the first year of her fight – on a cool and crisp sunny October afternoon, Matt Vollmar (Lead singer of The Great Romance -TGR) came to visit Janet during one of her many inpatient stays at the hospital. He sang an incredibly meaningful song, Bigger Than The Odds. The song speaks of A God, who is bigger than the odds. Janet fell in love with that song, the artist who sang it, and the band that plays it. She’d take much pride in requesting and hearing it played on the radio. Every time TGR was in concert anywhere within a reasonable driving distance, we made it a point to be there. It would be an understatement to say they meant a ton to us. 

Case in point, Matt Vollmar was one of a small handful personally asked to sing at Janet’s Celebration of Life (funeral) service. He sang an couple of her favorite songs, fitting for the occasion. 

This concert was the first concert I’d been to since she passed away. If you knew much about me, you’d know I’ve been to several concerts in recent years – at least 95+% of them, with my daughter in attendance. She loved music. Music has such a message, and even as a young kid, she “got” it. 

I had virtually no idea how hard, yet how impactful this concert would become. 

If you look closely, these are several of the pictures from the set where these guys/gals played/sang.

I walked in as the first group, For His Glory, was being introduced, and began to share about a cause that they support – a cause near and dear to their hearts. They seek to offer hope, healing, and practical help to people and ministries worldwide. In this instance, they spoke passionately about human trafficking, and connecting them with true and lasting, sustainable hope. The kind of hope that rebuilds lives, and communities. They have a global market, where they sell goods made by these rescued girls, to help them continue with sustainable income. I saw some of these beautiful items – baby bibs, any weather scarves, winter scarves, greeting cards, wooden sculptures, jewelry, etc. Incredible talent. 

Their mission is one near and dear to my heart as well. I was astounded to hear their heart and words in support of this cause. 

As they played, their songs spoke to my heart. I listened, and I cried. It simply couldn’t be helped. They were beautiful tears – not marked with sadness. They were my heart connecting with what felt like the very heart of God. I knew, in those moments, that I had to connect with these people. That is an indoor process at the moment, but their mission is also my mission. I’ll look forward to updating again as friendships form, and differences are made in our world. 

At the completion of their set, it was time for The Great Romance to take the stage. I didn’t know what to expect, emotion wise, but I didn’t have the slightest clue the difficulty level either. 

Look closely. These are some of several shots taken during this concert.

Their first song was a light hearted (one of a few) favorite of Janet’s. I had tears, but I was okay. The next song grabbed my heart, and was one Janet loved, got the meaning of, and was also sang at her Celebration of Life. Disappear. The basis of this song is asking “if I were to disappear, would there be footprints on the floor” – asking if the person wasn’t there any longer, would they leave a footprint on this world – a legacy of something more. At seven years old, my daughter knew she was doing, but she KNEW she would leave a legacy of love. She was and still is right. So yes, that song got me. A few other songs hit a spot, but nothing came close to the deluge of emotions that poured out of my eyes in the form of tears. I lost it. Not on a horrible way, but the tears freely streamed down my face, giant and very real crocodile tears. They were healing while heartbreaking, simultaneously. I was just enveloped with God’s love, but sported a shattered heart – knowing how much that song meant to Janet, and wishing I could watch her beautiful bald self, dancing to it time and time again. It hurts to not have her here – but my God – I wouldn’t trade having such beautiful and love filled memories of a life – seven years of a life – well lived. 
My daughter truly LOVED more in her seven years, than many will live in an entire lifetime – one that spans into adulthood, and old age. She was robbed of so much, but it NEVER put a damper on her smile. When I grow up, I wanna be just like her! Ha! 

To everyone who continues to connect with Janet’s story, and our ongoing journey, I want to thank you for the continued thoughts and prayers. Please and thank you for them continuing! 

A Time And A Season For All Things

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This picture is one I haven’t always as freely shared. It, however, is a beautiful moment in time. A moment that I have come to cherish so much more than words could ever explain. This little girl blessed lives, mine especially, in tremendous ways. There isn’t a day that goes by where I don’t miss her smile, hey love, and her “squeezy hugs” she so lovingly shared. I shared the following on her page, and I’d like to share it here as well. I feel these words are important enough that ALL people need to hear them.

I haven’t been silent here on Janet’s page because I wanted to – more because I needed to. Life just kept happening in a way that I had to take a step back, reflect, and just be. I know this is an incredibly beautiful community. A place fill of so much love. You all understand the concept of what #RememberTheLove really means.

Friends, I’d be lying if I said there wasn’t an element of brokenness also as to why the absence. As you can imagine, life isn’t ever again going to be what it once was – full of her bright, love-giving smiles and hugs. This, alone, breaks my heart. But, that’s not to say that life doesn’t hold incredibly precious moments.

I will say this also. Both Janet’s life and also her death have taught me powerful lessons on life and love.

You see, I’ve often mentioned the value of another person’s time and the true gift that it’s friendship. It is simply irreplaceable.

I’d like to share a “case in point” example of this scenario in action. What I want to showcase is that – though there is pain attached to these memories and events – there is also an incredible amount of comforting love.

In the months and even years leading up to her death,  so many people surrounded us in love. As those years turned to months, and the months then turned to weeks – a different kind of people, new and deepening friendships emerged. The last two weeks were beautiful in so many ways. People we never expected became close, like family. They were welcomed with open arms. Desperately needed in those final moments. And, they were there.

In the weeks, now months since Janet passed away,  there has become yet another shift. I have come to realize that some of those friendships were built for just a season. That season, and sadly nothing more – whereas, some of these same friendships have stood the tests of time – and also including death and grief.

There have been many who uttered words that I’ve found myself only wishing they meant – I’ll be here for you – any time, day or night. But, even in those times, I sit back and breathed it all in. I take those (sometimes painful) moments, and I remember whatever season someone said this to me in – thankful again for whatever part they played in our story.

I will tell you this – it is for these reasons that I don’t as often say these words to people. When I do, you can rest, assured that I mean what u say. That kind of offer won’t ever come with an expiration date. Perhaps this is because I know the intense pain of needing someone who once filled a very special place – it maybe just because I love people and see the inherent value of human life.

Whatever the case may be – I want to thank you for the part you’ve played in our journey – before or after Janet passed away — even if you are one who (consciously or otherwise) walked away when you didn’t know how to handle things. This (inaction) doesn’t define the purposeful and special times we did share.

You be you. There’s no-one more qualified to play your part. Just also allow me to be me – learning and growing, grieving and loving. That, after all, is what so much of life is about. To live and be loved.

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And, friends, I meant every word – both there, and here. It is with sincere gratitude I say thank you for sharing and walking through this life with me. I cannot do it alone.

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A Time And A Season For All Things

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This picture is one I haven’t always as freely shared. It, however, is a beautiful moment in time. A moment that I have come to cherish so much more than words could ever explain. This little girl blessed lives, mine especially, in tremendous ways. There isn’t a day that goes by where I don’t miss her smile, hey love, and her “squeezy hugs” she so lovingly shared. I shared the following on her page, and I’d like to share it here as well. I feel these words are important enough that ALL people need to hear them.

I haven’t been silent here on Janet’s page because I wanted to – more because I needed to. Life just kept happening in a way that I had to take a step back, reflect, and just be. I know this is an incredibly beautiful community. A place fill of so much love. You all understand the concept of what #RememberTheLove really means.

Friends, I’d be lying if I said there wasn’t an element of brokenness also as to why the absence. As you can imagine, life isn’t ever again going to be what it once was – full of her bright, love-giving smiles and hugs. This, alone, breaks my heart. But, that’s not to say that life doesn’t hold incredibly precious moments.

I will say this also. Both Janet’s life and also her death have taught me powerful lessons on life and love.

You see, I’ve often mentioned the value of another person’s time and the true gift that it’s friendship. It is simply irreplaceable.

I’d like to share a “case in point” example of this scenario in action. What I want to showcase is that – though there is pain attached to these memories and events – there is also an incredible amount of comforting love.

In the months and even years leading up to her death,  so many people surrounded us in love. As those years turned to months, and the months then turned to weeks – a different kind of people, new and deepening friendships emerged. The last two weeks were beautiful in so many ways. People we never expected became close, like family. They were welcomed with open arms. Desperately needed in those final moments. And, they were there.

In the weeks, now months since Janet passed away,  there has become yet another shift. I have come to realize that some of those friendships were built for just a season. That season, and sadly nothing more – whereas, some of these same friendships have stood the tests of time – and also including death and grief.

There have been many who uttered words that I’ve found myself only wishing they meant – I’ll be here for you – any time, day or night. But, even in those times, I sit back and breathed it all in. I take those (sometimes painful) moments, and I remember whatever season someone said this to me in – thankful again for whatever part they played in our story.

I will tell you this – it is for these reasons that I don’t as often say these words to people. When I do, you can rest, assured that I mean what u say. That kind of offer won’t ever come with an expiration date. Perhaps this is because I know the intense pain of needing someone who once filled a very special place – it maybe just because I love people and see the inherent value of human life.

Whatever the case may be – I want to thank you for the part you’ve played in our journey – before or after Janet passed away — even if you are one who (consciously or otherwise) walked away when you didn’t know how to handle things. This (inaction) doesn’t define the purposeful and special times we did share.

You be you. There’s no-one more qualified to play your part. Just also allow me to be me – learning and growing, grieving and loving. That, after all, is what so much of life is about. To live and be loved.

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And, friends, I meant every word – both there, and here. It is with sincere gratitude I say thank you for sharing and walking through this life with me. I cannot do it alone.

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Bridging The Gap Of Faith And Reality

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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.

With Childlike Faith – Fighting Childhood Cancer

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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.