Tag Archives: brain cancer

Oct16

Issuing A Challenge – Remembering How To Smile

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I was just browsing through some pictures of my sweet girl. For those of you who might be unaware, my little girl passed away three and a half years ago after fighting a one of a kind brain cancer. I have shared previously on this blog, and I’m fairly certain I will share again in the future.

11026172_803042006452078_6786944172042754938_nThis one, like so many, captured her personality. Sweet and dainty, yet fierce and vibrant.

She wasn’t afraid to wear what she wanted, when she wanted, simply because she wanted. She wasn’t afraid to go against the grain. She wasn’t held back by societal norms. She was authentic. She was real. She loved people well, and she was loved.

I write this because the thought grabbed my heart. Why aren’t we all a little more like Janet – a little more like an innocent child? Yes, we live in a broken world, and it’s easy to become jaded in the face of the polar opposite of love.

When we hurt, when we walk through trauma – through hell on Earth, it’s easy to grow calloused and protect the vulnerable interior.

But, I want to challenge you today. Just as I seem to need to challenge myself.

Let’s take a look at my little girl. Take a look at your own child. Maybe take a look at yourself as a child. Go back to a time where there was innocence. Remember a time where happy existed. Remember the moments where you’d go outside and play, or perhaps beg for ice cream from the ever sounding ice cream truck.

Think on times that society had not yet set “norms” and expect you to adhere to. Think on love. Think about what would happen if you allowed yourself to abandon all those preconceived notions on what life could or should be like, only if…Allow yourself to simply, be.

Give yourself permission to be who you are, who you are right now, to feel how you feel in this moment, and to know that somehow – that has to be okay.

Recognize that it truly is okay to not always be okay. Just try, even moment by moment, to not live in that place forever. Try to see the beauty. Know that even when hope may seem to be playing an epic game of hide and seek – it is only hiding, not missing. It isn’t gone. Drill that fact into your head and heart. For, know this. There will be times that your head and your heart are at war.

If you can teach yourself some simple truths, to hold onto during those rocky times – those broken fragmented moments will pass, or you’ll at least be closer to enduring them with even slightly more strength.

I wrote all that to say this – all hope is not lost. It may be the hardest thing you do today, but think of something that makes you smile. If you are not happy right now, if you are hurting – think back to even just one thing, to one time you were happy. Allow yourself to smile, even laugh. It may not last forever, but allow it to last for this moment. This moment matters. You matter. You are worth it. Your continued story is worth it. You are valued. Just as you are. Here and now. Take the time you need to simply, be. And know that it is enough for this moment. And for the next moment. Strength is grown moment by moment.

If you are hurting today, know that you are not alone. I am too, and I understand the sting of pain. I understand missing a child, a brother, a cousin, a friend, and many others. But, I also know the value in reaching out. In community. In being part of a tribe.

Thank you for continuing to be a part of my story – my journey. I need people in my life, and I know you do as well. It is part of the human condition. We are created as community people. To do life alongside each other. Thank you for giving me that gift. To those who continue to share your love, and your thoughts and/or prayers – know you have my continued gratitude. Please, never stop.

If this resonates with you, and you would like to further discuss, please feel free to reach out – either in the comments below, or you can always feel free to send me a message. I love connecting with this beautiful community. A community founded on love.

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Apr17

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.
Nov7

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

Jul19

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! 

Jun27

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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Jun27

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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Feb22

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.

Sep12

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.

May8

Learning To Love The Lemonade

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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)

May2

Faith In The Struggle

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Your faith will be illuminated, especially in the midst of a struggle. No matter what the situation – good or bad, whatever faith you propose to have — it is that faith that people will see. How you respond in the struggle will be a true test of what level of faith and trust you have in the Maker of all of creation.

My life recently has been turned upside down. I am struggling in a way that I don’t even always understand. As I find myself walking down this new path that I certainly didn’t ask for, I do find my faith being strengthened. I don’t understand what all is happening, but I love a God larger than life. Regardless of the struggle, He is faithful. He is good, and that is never changing.

Does that mean I like where I am, or what’s going on? Not at all. Am I grateful that God is able to use even this for a greater purpose? Yes, that I can answer yes to.

What is my struggle, you may be wondering? Let me share…

We found out two weeks ago today that my four year old daughter had a brain tumor. Talk about unexpected. There was the thought that she had a viral illness, and nothing more. Certainly not this. She underwent surgery to remove it a week and a half ago. The surgery was successful, and it appears that they got it all. That is the really good news. The fact that it’s aggressive and rapidly spreading – not so much. So, even though they got it all, it’s quite likely that she’ll have to go through chemo and/or radiation as well.

I wrote the following few thoughts four days after she was admitted at the hospital:

It’s really a hard thing sometimes – maintaining faith in the middle of some unimaginable emotions and situations. I have faith in a God larger than life. He created my little girl, and He knows her – from the inside out. He knows exactly what she needs, and how to take care of her. No matter what she (or any of us) goes through, He gets it. His love for her is strong, and never failing.

I know I sound like I’m preaching – and I guess to a point, I am. My thought pattern is this – regardless of what’s going on in that little body of hers, God is still in control. I don’t have to understand or even like what’s going on, but He is definitely in control. He is holding her safely in the palm of His hand.

My faith is strong, and I pray will remain unshaken. I hope that I can continue to see this through the lens of faith, and perspective of His amazing love.

Faith in the struggle. Struggle allows you too realize that things don’t always go as planned. In the midst of a struggle, though, it is okay for things to not always be okay. The key when things aren’t going as planned is to just know with certainty that God’s got this… Yes, even this.

As you can imagine, things are very tough right now. It’s odd, because it’s almost as if my heart is simultaneously broken and filled with hope, all in one. What I can say is this though. God is still good, and that fact remains. Please know how much we value your friendship, support, encouragement and especially – your prayers. Grateful beyond words.