A Glimpse Into the Life of Pediatric Cancer-The Day Mac Went to Heaven

A Glimpse Into the Life of Pediatric Cancer-The Day Mac Went to Heaven

Lay by me, Sum, but don't touch me!

There are so many wonderful moments that I could share, and I will, but I seem to do everything in life backwards, so it only seems natural to start at the end of the story and then over time, work my way back.

You see, there is so much goodness in pediatric cancer. The nurses, doctors, child life, foundations and even the food service workers and janitors go to extremes to make you forget that you are scared to your core and in a hospital filled with bed after bed and floor after floor of children. Every time I enter a children's hospital, I lose my breathe. It's a reality that so many of us are lucky enough to never have had to experience and even though I did, as a sister, it feels like a lifetime ago.

Today I am choosing to share a story that has been weighing on me all week. It's not something I speak of often, but last week I was asked by a doctor how Mac died and it took me right back to that moment...

It was November 27th, 2002. Mac had just spent weeks in PICU (the pediatric intensive care unit) due to graph vs host. The graph vs host was due to his STEM Cell Transplant. Even though the STEM Cell's were the best match possible, they're foreign cells entering a body, so your body does everything it can to fight it off. They put patients on medicine so that your body, hopefully, accepts it willingly, but if that doesn't happen the side effects are unlike anything I've ever seen. We were told night after night that Mac wasn't going to make it and I was pretty sure there were a couple nights that I didn't think he would nor did I think we would. There were so many moments where I know we all stopped breathing. How is it humanly possible to look at a child you love so much going through all this, without feeling as though you are too? Well, it's not. We lived in constant faith and fear, but the adrenaline of it all kept smiles on our faces and playing games so Mac wouldn't see how scared we really were. Back to that fateful day...

Miraculously, Mac, was cancer free and going home! I had went to the hospital the night before. My mom and I had packed up his room both in the hospital and at the Kohl's House so they could just hop in the car the next day and drive to my house. I've always been known to have premonitions and deja vu, but I didn't listen to my gut that night. I didn't want to leave the hospital at all, but there was a snow storm coming in, I was five months pregnant and I had a five year-old at home two hours away, so it seemed logical to beat the storm and head home. Mac was going to be home tomorrow any ways, so I'd see him then.

It was the following morning, the 27th. I had just gotten out of the shower, because I had sterilized aka cleaned the house so it would be nice and fresh when they arrived home from the hospital. The next day was Thanksgiving and we were so excited that they were going to be home! My mother in-law pulled in my driveway and asked why I wasn't answering my phone. I told her I was in the shower and asked why? She said that I needed to get to the hospital asap. I told her I'm sure it was fine and that I'd call them. We'd been through this so much in the past month that it wasn't really registering for me. I checked my voicemail's and there were messages from nurses saying to come now. The hospital was at least an hour and a half away, but my husband was working towards the city. I called him and repeated what I was told. He had missed so much work in those past few months, so he said, "I'm on my way but I swear if they're just doubting him again, I'm going to lose it." It was completely understandable. None of us doubted Mac. He had been given a 1% chance of beating the cancer and here he was a year later cancer-free, so the words often got old. You got to the point where you would think, "Ya, ya. I hear your statistics, but let me show you the spirit of a child and not only any child, but Mac's will." I told him to call me when he got there and I'd be behind shortly.

Naively, I dried my hair and got dressed not knowing when I'd be home next, because I figured we'd be there a few nights. Well, my husband never called me on that drive in and I didn't think to much of it, but the minute I exited the elevator and stepped onto 4 West, I saw why. Mac had already been discharged that day, but had to wrap up dialysis, something he'd be on three times a week for an unforeseen amount of time, but once he was done, my mom and Mac would be in the car on their way home for the holidays. What they don't tell you is that the dialysis machines are set up for adult bodies and then adjusted to work for children. Every time Mac was on dialysis his body went into cardiac arrest. We would just be sitting there talking or watching tv and then you'd hear the monitors go crazy. We'd then be thrown out of the room, while they were trying to resuscitate Mac. The first time it happened I remember standing in the hall, watching through the glass just screaming help. I was 26 years-old old at the time and scared to my core. I just kept thinking, "No, no, no this can't be happening, Mac!!!!!" Then, it was over and everything would go back to our new normal. Well, the morning of the 27th, was a bit different.

Mac was ten and all boy, the the morning of the 27th while getting set up for dialysis, Mac asked my mom to lay in bed with him and hold his hand. My mom was exhausted from the past few weeks, which I could only imagine to be a parents living hell, and crawled in bed next to him. Knowing that their was going to be so much activity and people in and out of our house for the holidays and to see, Mac, the over the next few days they quietly held hands and peacefully fell asleep together. I can't speak for my mom, but from the stories I've heard, my mom awoke to all the beeping of a Code Red. Mac was in full cardiac. They were trying to save him. My mom ended up running out the door, out of the hospital and right across the street looking for help from the head of dialysis and then ran back to the hospital. In that moment, Mac was having an embolism which cut of his oxygen supply. Not knowing any of this had happened, I walked off that elevator giving my normal smile and greeting to the welcome desk, but no one smiled back.

As I turned the corner to his room, his dialysis nurse dropped at my feet sobbing and said, "Summer, my head knows I did the right thing, but my heart doesn't." I told her that this was Mac and I'm sure it'll all be fine. From what I hear, she took a leave of absence that day as these are not just patients to the nurses, they become family. I was not prepared for what I was about to walk in to. My mom was by the window holding Mac's hand. Mac's head was turned towards her and I couldn't see his face. My husband sat by Mac's other leg with his head down. Mac was making a noise unlike anything I've ever heard, but a noise I will now never forget. I hung my coat (yes, still in denial) and asked if he was joking with that noise. I would have been that surprised. Mac was funny. His doctor, was their and said, "No, but Mac's been waiting for you." I walked over and saw his eyes closed, his face not of my brother who was full of life, smiles, defiance and practical jokes, but of a body, a shell of who he once was." My mom gave me his hand. I talked to him and then asked his doctors instantly how long this could go on for. I couldn't take one moment of this, more or less days. They said it was up to Mac, he was comfortable, but they were pretty sure he was just waiting for me. Then it happened. A "Mac Move" like no other, his final joke to make us all laugh. It will sound demented when I write it, but if you were there and saw how lifeless he was, you'd know it was his last hurrah to me. He took a breath and blew blood out of his nose all over my face and shirt. We all started to laugh as I dry-heaved. He knew I had a weak stomach and being pregnant wasn't helping. He went to heaven just moments later at a time when we thought he'd be in the car listening to Shaggy, and heading home for the holidays...

*This was not Mac's final prank for me even though we thought it would be. God's always winking, so I've learned...

Kindly,

Summer

Want to learn more about sponsoring a Brave Gown for a child currently on our waiting list? Look for our Give-A-Gown link! www.bravegowns.com

Summer Germann
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Brave Gowns Clinical Trial Started & I Wanted to Share the Day with You!

Brave Gowns Clinical Trial Started & I Wanted to Share the Day with You!

It took me longer than expected and I pulled up right on time, not what I originally hoped for. Thankfully God & the universe had my back, because you see that white car right there? Well, that car was pulling away right as I was pulling up and not only was it the only spot on the block, it was also the closest spot (on the street) to the entrance. It was especially helpful due to the heaviness of the box of Brave Gowns, which leads me to the box...

This here box was filled with the 200 Brave Gowns. It's a heavy little box. I made it about four steps from my car to that bench when I started to see stars because I didn't have it gripped correctly. I regrouped, took a deep breath and hustled to the next bench about 75 feet away.

The next bench happened to be right by the entrance and I made it! It might not have been graceful, but I got there and that's when I saw said sign behind the bench which read "valet!" I'm thinking they would have let me pull up and unload the box there had I known...

Then I went inside, but there was about a 10 family wait to be able to speak with the information booth, so set the box off to the side and got in line. That's I looked over and happened to see this...

I laughed out loud! I mean, look how much Brave Gowns were already helping children and they weren't even out of the box yet!

The lady checked me in and I went to grab the box! That's when a nice women offered me a wagon! She was a lifesaver...literally! She was a nurse...

             Up, up and away we go! Sixth floor, here we come!

I can't even begin to tell you how much I love the doctor that is doing the trial. She's a tough, but gentle woman from Milwaukee, which made me even more fond of her. She could have easily have been a long lost aunt and runs the Pre & Post Op. Fun little fact here...For Pre & Post Op, they have to provide two gowns to each patient. One to cover the front and one to cover the patients back to have access to both. However, Brave Gowns eliminate this problem and the patients can move around comfortably in only one BRAVE GOWN! Well, back to the doctor, it just so happened that she felt the same way about the box as I did, so we took all the gowns out of the box and spread them all over her room so the nurses could come grab them as the pleased!

I gave here a hug, which actually might have scared her a bit, and I was on my way crying with gratitude. By the time I got to my car, I already had and email with the image below from the doctor saying "the nurses loved them so much that they wanted to wear the gowns too!"

(mind you they're not the right size ;)

How adorable are they?

        Did I mention that she even made me take the empty box? Told you I loved her!

So, I pulled away from the hospital and had talk radio on. Ok, I actually still had Joel Osteen on from the ride in and out of no where, it switched to jazz. It was so out of the blue that I Iooked down and the radio and there it was...

11:11am

It's our thing. Mac was watching. He was proud. He was letting me know it's all going to be ok! I closed my eyes and took a deep breath and for once...I exhaled, but then I quickly opened my eyes because I realized I was driving!

Last picture...

It was the first day in a year and a half that I realized I might actually get to finally change my toe nail polish color. It's called "Eternal Optimist" and I can't change it until there's a huge movement for Brave Gowns, because I swear it's brought me the most luck ever! Every time I try to wear something else, I lose my mojo, I swear...

Thank you all for being on this journey with me! It's been such a gift...

Now watch out, it's Childhood Cancer Awareness Month & we have some work to do!

Kindly & Blessed,

Summer

                                 Give-A-Gown Today! www.bravegowns.com

Summer Germann
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91 Gowns Down Only 409 To Go!!!!

91 Gowns Down Only 409 To Go!!!!

Hi All,

I just wanted to say THANK YOU to everyone that has shared to posts and taken the time to sponsor a gown!

I also wanted to just bow my head in gratitude to @TeamRyan and @CenterCutCook who are not only Mile's parents, but Ryan is also on his 60th round round of chemo and Ashley somehow manages to keep up her blog while taking Miles to his almost daily dialysis treatments and taking care of their home and Ryan's needs as well. So on top off all this, they shared my post with their followers and together we are at 91 gowns! 59% of those gowns were directly from @TeamRyan! I'm constantly amazed by the people that reach out to support other's journeys. It would be so easy for them to feel that they had enough on their plate, but instead they reach out to do more.

I just wanted to thank them personally as I am forever humbled by their generosity, their family, their kindness and their willingness to always do more!

GODSPEED, My Friends.

Summer

ORIGINAL POST SHARED Last Give-A-Gown Push For 2016

www.bravegowns.com

 

 

 

Summer Germann
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Last Push For 2016! Help Us Go Out With A Bang For St. Jude & Then I Hand It Off!

Last Push For 2016! Help Us Go Out With A Bang For St. Jude & Then I Hand It Off!

Hi,

So it’s me, Summer! I’ve been sitting here staring at the computer for a good five hours. I promised myself that I wouldn’t take a shower until I get this blog up. Well, I'm pretty darn greasy and I have to get to the post office to send out packages so I'm finally wearing myself down. I've answered emails, drank two cups of coffee, brought in the garbage cans, organized my daughter's school supplies, turned on a motivational tape and put a hat on, so I'm running out of distractions. I am so excited to get this message out, but I want it to be perfect and I actually want it to be a video, but I cry when I make videos and this girl has no time to cry today!

You see, I've come to terms with the fact that I'm allowed to hit my goals for Brave Gowns without being embarrassed or ashamed. When I usually hit goals, I get quite and overwhelmed. Too much goodness in the world is hard for me to bear. I feel it physically in my bones. It's paralyzing. Somewhere along the line, I learned to handle pain easier than it was to handle achievements. Because of this, I probably made some poor business choices, but you will never meet someone that listens to her gut like I do. The instant that something doesn't feel right to me, it's like I was sucker punched in the stomach and I run. It's saved me from a lot of poor decisions and anytime I tried to fight it, I regretted it with all my might, because my gut was always right.

For a year you would never have heard me talk about Brave Gowns out loud. I felt like it was something so much better than I and I wasn't worthy of being the source behind it. Then recently something just switched. I get emails, texts and calls from families every single darn day updating me on how their kids are doing. What the test results were, how the surgeries went, their MRI results, the actual images of their bone scans, etc...God picked me, because a Brave Gown isn't just a product, it is a gift of hope, a sign of someone out in the world saying, "we can't even imagine what you're going through, but we wanted to show you support from our family to yours." I was given the gift to bring Brave Gowns into the wold, because I lived it. I was in the hospital with my family at times when we thought my brother wasn't going to make it through the night. We lived through moments where we were told to say goodbye and then he lived for months and became cancer-free. We lived through multiple moments where we'd be sitting there laughing and then he'd go into cardiac and before you know it, I'd be thrown into a hall with doctors and nurses running past me and watching them revive my brother and then life would resume to be "normal" again. There is a smell that sticks with you that you never forget. Once in awhile it still hits me and I drop straight to my knees and remember how scary, yet wonderful life once was. So I do not just selling a product, I make sure that I am in contact with the families of every child that wears a Brave Gown. I know their names, the illnesses, the important dates coming up for them and their families phone numbers. I get texted when they get results and when they come back with wonderful news, we celebrate together. When scarier news comes, I provide any and all words of encouragement and offer prayers, because that is all I can be in that moment. Through their families I get a moment to be there again, with one more shot at a happy ending.

Next month, I have the opportunity to partner with an organization that is already in every children's hospital. They work closely with the child-life in the hospitals and has their own corporate and private sponsors that will be able to do what was always my end goal "PUT A BRAVE GOWN ON EVERY CHILD BATTLING AN ILLNESS!" I will still own and run Brave Gowns, but the Give-A-Gown program will be ran by them. I will still be able to "give gowns" but it will be through their "Give-A-Gown" program, so Happy Ditto would be a sponsor as well. Ironically, if we move forward together, the launch would be on Halloween. The exact date that my brother was diagnosed and the exact date where I painted his face as a zombie and triggered the thought of Brave Gowns! It's so amazing how the universe works and if you trust the process and have faith it works out exactly as it was meant to be. I can't wait to be able to sit down some day and tell the real story of Brave Gowns and all the miracles I've witnessed first hand!

With that said, I want to finish what I started and know that we finished what we set out to do! We are still 500 gowns short for St Jude. I know that we can hit this goal! I am asking that one last time you can give $36 to provide a gown for a child at St. Jude. That together we can hand this off knowing we hit our goals and that we started something that the next group is going to have huge shoes to fill and that we can say one more time, "Hey Mac, look what we did, Buddy. We did good, Kid! We did good!"

I am forever grateful for all of your support! This is just another chapter in Brave Gowns journey!

Be Blessed!

Summer

Hey Summer, I can Give-A-Gown Today!

 

Summer Germann
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ONE YEAR AGO TODAY!

ONE YEAR AGO TODAY!

One year ago today I woke up knowing that we hit our goal and you all helped make my vision become a reality! I can't thank you enough! We've come so far together & we are still going strong! It's been a wild ride and I've made some choices that I hope were the correct ones. The end of the year of this year will be very telling of where the Brave Gowns journey will go!

If you want to keep sharing something that you helped start and we should all be proud of, please do! I have a big August ahead of me to keep my word for CHLA and St. Jude and when people said I'm crazy to shoot that high without another crowdfunding campaign I told them that they don't know how strong our Brave Gowns community is!!!!

Thank you for being part of something so magical!

An end to a day, is only a beginning of a new one. And similarly, every success marks a start of a new one. Keep your spirits high for a tomorrow that shall always come. Keep faith, courage and hope in life and never let your dreams sleep.

Kindly,

Summer

www.bravegowns.com

Jean Malanaphy
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Brave Gowns Are Spreading Like Wild Flowers & Bringing Smiles and Hope!

Brave Gowns Are Spreading Like Wild Flowers & Bringing Smiles and Hope!

The Brave Gowns video has been updated in the beginning and the end to show actual Brave Gowns with their new and amazing front and back designs! They just keep getting better and better!

We start another clinical trial with a children's hospital next week and are also very actively trying to raise 700 gowns for St Jude! If you can find it in your heart to sponsor a Gift-A-Gown for a child, whether it's your first time you or you have supported Brave Gowns since the get go and keep making these miracles happen now is a very crucial time. We have promised St Jude to have the gowns to them by the end of August! That's approximately $25,000 in less than a month that we have to raise! Even the smallest makes a huge difference. We are determined to bring happiness to these fighters at a time when all other children are excited to back to school, but these kids are still in the hospital fighting for their lives. It's the least we can do!

It's so easy to sponsor a gown! If you want to choose any monetary amount and receive a write-off you can go directly to www.happyditto.com.

Or if you want to sponsor the Gift-A-Gown you can click on the image below and pick the option of your choice! GIFT-A-GOWN

We've been spreading so much greatness and happiness! Please help us continue our journey!

God Bless,

Summer

www.bravegowns.com

Summer Germann
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The Power of Brave Gowns & The Brave Gown Video

The Power of Brave Gowns & The Brave Gown Video

Hi!

I just wanted to share the original Brave Gown video to show how far we've come, that we've got the ball rolling and we have so much great work to do! 

I started Brave Gowns in memory of my little brother, Mac! He was so magical and full of life! Every day his hospital room was filled with joy, smiles and hope! He was the bravest boy I ever knew! Through Brave Gowns, I hope to share his spirit, imagination and magic with all children (and adults ;) that are battling illnesses in hospitals across the world! We are currently doing clinical trial with children's hospitals thought it the US, because doctors, nurses, patients and parents have all witnessed the power of Brave Gowns!

Click here to watch the original Brave Gown Video!

Please help share to show we care!!!!

Kindly,

Summer

www.bravegowns.com

 

 

Summer Germann
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So Many Reasons To Be Grateful! This is Karter.

So Many Reasons To Be Grateful! This is Karter.

I logged on to write a list of things I'm grateful for, which is so darn much, even though I can't get out of my own head this week. When I did, I found a family that has the love of a two year-old boy with cancer as we did for Mac. They tried to get a hold of me every which way possible, which is just what I would do. It was the aunt and I loved her from the get-go.
Here's what one message read:
He is a 2T, loves the beach and boogie boarding.. I found you on facebook, messaged you and then figured you didn't sere my message because we are not friends... So then I added you on fb so you can see the message but I don't think it was approved - that's ok! I am just trying every which way to get a hold of you. After searching your website and reading your story I immediately became angry.. A medical error. Wow. You took my breath away. I am happy to see that you found good in the worst situation and have made it a mission to help others. I couldn't love this idea more. Please let me know you got this ASAP - Thank you :)
 
Initially, I didn't realize Karter was just diagnosed with Neuroblastoma last week. You can find his story on Facebook as Saving Karter. He took my breath away. He has the blonde hair, blue eye of Mac and he loves the water and to surf. I'm pretty sure Mac sent this story my way, to remind me that there's a reason I'm doing this and to never forget. He wants a "Muscleman" Brave Gown because he loves the ocean and his dad has tattoos. My new favorite quote is "Rough seas make the best sailors."-Ghandi. Isn't that the darn truth! Please send a prayer out to his family. They are good people.
 
So when I keep posting about Give-A-Gowns and ways to help, don't let it drive you nuts, please just know that it is because Brave Gowns goes for weeks without getting one gown sponsored and I get story after story like this and behind every story, there's an adorable child, with a family that is scared beyond belief! If Brave Gowns give them a little hope, then a Brave Gown they shall get!
 
2,200 gowns to go for the month of July. Will you be one of the 2,200 people to sponsor a gown to be part of this journey?

or if you want to make a donation for a write-off please go to www.happyditto.org.
Thank you from the bottom of my heart!
Summer
Summer Germann
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Actual Images of Actual Brave Gowns!

Actual Images of Actual Brave Gowns!

I'm overly excited! We FINALLY have actual images of ACTUAL Brave Gowns to show how much better they are than standard gowns! To get rolling, we used stock images so that customers and sponsors could get an idea of what a Brave Gown was! Check them out now! No baggy sleeves, the nice clean cut of the back w/full coverage and somehow, even in the images you can even see how soft they are! Go to www.bravegowns.com to check out more designs! SEE! These are gowns that we can actually be excited about GIVING!!!!

Summer Germann
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Give-A-Gown Today and Recieve A Trucker Hat!

Give-A-Gown Today and Recieve A Trucker Hat!

Have you been wanting to sponsor a Give-A-Gown, but hadn't had a chance yet? Well everyone that sponsors a Give-A-Gown to a child currently battling a terminal illness will receive a Brave Gown Trucker Hat, so today is the perfect day to sponsor a gown! Make a child feel like a SUPERHERO today! www.bravegowns.com

Summer Germann
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GIVE THE GIFT OF STRENGTH TO A CHILD!

GIVE THE GIFT OF STRENGTH TO A CHILD!

Remind a child how strong they are by gifting them with the "MUSCLEMAN" Brave Gown! Brave Gowns are the perfect gift for a child battling an illness or going in for a surgery! Not only do Brave Gowns bring a smile to a child's face, they are t-shirt like soft, have dual IV sleeve access and full back coverage! Once a child puts a Brave Gown on, it's hard to get them out of it! 

As Paul Y. Song, MD Radiation Oncologist/ Husband of Lisa Ling wrote:

"At a time when many kids' bodies, physical appearance, and self esteem are ravaged by cancer and their associated treatment, Brave Gowns provides a wonderful source of comfort, joy, and much needed fun. It also makes access to wounds and IV ports much easier for healthcare providers. Above all, it is a very thoughtful solution for a very vulnerable patient population." 

Purchase a gown today or sponsor a gown on our waiting list for a child currently at ST JUDE at www.bravegowns.com

Summer Germann
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Let Their Imagination Take Them Anywhere...That's Not In A Hospital!

Let Their Imagination Take Them Anywhere...That's Not In A Hospital!

While our children are off doing fun things for summer, there are millions of children that are laying in a hospital bed wishing they could be outside playing! Bring them courage and a smile today by supporting our Give-A-Gown program! Click here for more information: http://www.bravegowns.com/products/donate-a-gown

Summer Germann
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