Morgan Kelly Tough: A Childhood Cancer Hero

Where to begin...

This is a big post.
A deep down tug at your heartstrings kind of post.

Stacey and I were in high school together and through the graces of good ol' Facebook we have been able to check in on each others lives through out the many years that has since passed.  Through Facebook I was able to "meet" her baby girl, Morgan. The most beautiful and perfect little baby girl I had ever seen. I often referred to her as the "Gerber Baby," when talking to my husband about how beautiful she is. Also through Facebook, Stacey was able to "meet" our baby boy, Rocco. She was always there to lend an encouraging word or two, offer her and Morgan's prayers at night, just support us through our journey with Rocco's Marfan Syndrome.  

In April, Joel and I happened to be photographing a wedding that Stacey was a guest of. During the reception I was able to sort of catch up with her and she began getting teary eyed speaking of my son Rocco and his diagnosis. She told me she had been researching Marfan Syndrome and congratulated us on being the best parents in the world for our little boy. It was one of the sweetest encounters that just left me smiling from ear to ear. I even remember telling Joel on the ride home from the wedding of our little catch up session and how endearing Stacey was that evening to me. 

Fast forward two-to-three weeks, through the grape vine I heard such devastating news from some of Stacey's coworkers. That Stacey and caregivers had felt a lump near Morgan's belly button and that she has cancer. I was so devastated and disturbed. But she is only two? How? Why? The perfect little "Gerber Baby" has cancer? There is no way! 

I finally got up the nerve to reach out to Stacey in late May. Even though I was itching to hug and wanting to cry to her from the day I heard the news, I held off. I know how overwhelming and numbing those beginning days and weeks can be; just doing what you can do to keep your head afloat in the pool of worry and sadness. I am just so happy I did reach out to her finally. I am happy I gave her someone to vent to, to cry to, someone that understands the pain of feeling helpless. 

When your child is going through something that is bigger than either one of you ever imagined, the feelings are almost indescribable. Stacey sent me a few days of a journal that she kept throughout the entire process. Honestly, she could not have put worded the words in a more perfect form. It screams everything I have felt or thought. An in order to not rip off her words I will include an exert from Stacey's journal that lays out those immense and overwhelming feelings perfectly. 

"I worry...maybe its worry that I feel. The unknown. I look her in the eye and think what if………  

What if one day she isn’t here….what if they say its cancer……what if I don’t make the right decisions to help her fight this…..The saddest thing is that she doesn’t know anything.  She has NO fear, NO understanding of what’s happening, and has NO idea of these horrible feelings I have. I think it’s a feeling of sadness. I can’t describe it…I just feel it."

"I have come to the realization that my child has cancer.  It is surreal, never in a million years did I ever think that my baby (perfect with ten little fingers and ten little toes)has cancer. Chemotherapy is the treatment and its sickening to think that I have to agree to put her little body through this. I can’t imagine life without her, so now is the time that I just “do.”"

"People say, “I don’t know what I would do..I can’t imagine how you’re dealing with this…you’re doing so great…”  Because, you just do! Anyone in my shoes would say the same…I didn’t choose this, I didn’t pick it, I didn’t go and buy it at the store for her… SO, now I just do whatever it is to make her happy and feel better (or the best she can feel for the day).  Dance party in the living room, a bike ride around the block, facetime with friends and family…we just DO!"

"I hope one day I can help another mom who has had to endure the feelings I have had..I hope one day I can tell her that my child fought and survived and hers will too!!"

Her words are EVERYTHING to me. You just have to DO, one day at a time and choose to live through it with a positive mindset. For me having this blog has helped me express my thoughts, feelings, and fears. It's helped me move out of the darkness. Because truly in the long run, remaining in the darkness will not only affect me but it will affect the children. I also look at this blog as a source for other moms that may end up going through the same journey unexpectedly; hoping to all get through to the end together! 

Stacey you are everything Morgan needed, you gave her everything you had to give. You can't look back on the whole big picture and think and wish you had done it differently. You did it the best way you knew how, the way your heart told you to get through it. You are an amazing mother with a huge heart and an amazing little girl. Her smile lights up the sky. That smile is proof you are doing and did do the "right" thing.

Morgan ended up having four rounds of chemotherapy and three surgeries, one of which was to remove the tumor. Here is another exert from Stacey's journal: "7 weeks and two days after treatment.  Clear cat scans, bloodwork is normal….and I can finally breathe!  She is two and a half and happy as a clam.  Her endurance is getting better and still loves all the same things: singing, dancing, chasing, running, and riding her tricycle.  She is somewhat different-mature…..maybe, cautious….maybe,I can’t figure it out, but I don’t need to right now.  She is happy and healthy with a full head of peach fuzz.  We aren’t completely out of the clear, but we are in a great place: REMISSION!!!"

REMISSSION!!!!! 

What beautiful news to hear! At the end of Morgan's treatment we met up to do a fun little photo session with Miss Morgan, a celebration of the end of her treatments! 

Wearing those gold shoes in support of Childhood Cancer Awareness month!

 VICTORY for this BRAVE one!!! 

Please consider donating just a few dollars towards her upcoming

Morgan Kelly Tough CureSearch Walk

From Stacey's Facebook page: "You may not be a parent of a child with cancer...awareness may not be a big priority, the day before my child was diagnosed...I wasn't a cancer parent either." It's only $10 to sponsor or walk and enjoy all the family fun festivities!!!!! And, all funds go straight to research!!!!! Thank YOU for helping raise awareness and finding a cure for ALL childhood cancers!!!

Click on the link right above to send in your donation. Literally only a few more days before the CureSearch Walk.

That sneaky little sly fox of mine.  So so cute watching babies kiss! 

Just look at his face after she kissed him! So happy. :)

Thank you Stacey for allowing us to be someone to listen to your fears, to share Morgan's story, to photograph her, and to just be a friend. You have amazing strength. The strength of a MOM. Best job on earth!

xoxo- Christy

Delaware Newborn: Chance Daniel Wright

I am having major baby fever over here with all the amazing newborns I have had the privilege of photographing recently.  I am just in love with each and every newborn. I want to snuggle them all day!  However that may send a few crazy lady flags in the air. 

I met with this next little handsome guy last week for our session, Mr. Chance Daniel Wright was born on August 30, 2014. He was already almost two weeks old when I met him!  But he was born a few weeks early so he was still all kinds of newborn sleepy and huggable!  

Here are just a few of my favorites. There are truly so many that I just loved with this little guy. 

This photo just makes my heart melt into a puddle. <3

I truly hope to be able to photograph this sweet little guy as he grows.  His mommy and I also have the same exact name, Christy!! :) Thank you for letting me spend time with the two of you, I had such a fun morning. 

xoxo - Christy

Miracle Baby

Miracle Baby indeed. 

He's everything I'd ever hoped or dreamed of, actually he's more, a lot more.

Nothing can test the depths of your heart like having your own child can.  Add on a surprise diagnosis of Marfan Syndrome with a very serious heart condition that will never get better, your heart can start to spiral into a black abyss of fear and sadness. A sadness I had never known before. 

Many of you have heard me speak of my feelings and emotions of Rocco's birth and diagnosis. Many of you follow his doctor updates via here or Facebook. We appreciate every second you spend thinking of our little miracle. Your love and kindness towards us and Rocco, means the world!

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I'm here to introduce Rocco to a beautiful network of loving mothers and shop owners on Instagram (my new obsession). Tink and Key was so generous to send Rocco a miracle baby tee in celebration of the miracle that he is, and truly all children are.

Rocco truly blessed us the day he was born.  He didn't fit the cookie cutter mold of the "perfect" baby boy. He was different, even when no one else mentioned it, I knew he was different. I didn't know in that moment that it was going to be the scariest few days of my life to follow.  

Quickly we learned that Rocco may potentially have Marfan Syndrome based on the sheer length of his fingers, toes, feet, arms, and legs upon birth.  Then they heard a heart murmur. Still holding on to optimism, I said to myself, "Oh no big deal really, my mother has always had a heart murmur." I was so naive to what a heart murmur truly can signify to such a small little guy. In all honesty my mind was disturbed by vanity of what people may think of my son with his "spider-like" fingers and long feet, not what a heart murmur could behold. My fears were misdirected, so when we met with a cardiologist to discuss Rocco's heart, I was hit with a ton of bricks---to the face.

The doctor discussed in detail what was going on with Rocco's heart--that he has a bicuspid valve, the weak connective tissue of his heart has caused the aortic root to dilate already one and half times larger than a normal newborns aortic root, his valve was floppy, he has mitral valve prolapse and leakage. He told us the progression of his neonatal marfan syndrome was rapid and that his heart would only worsen quickly. I asked the doctor if he had ever seen another case like Rocco's before. He said yes that he personally knew of one other baby that was born with the neonatal version of marfan syndrome like our son. He then told us that he could potentially only live 6 months as the one other case he knew of only lived to be 6 months of age. The floor dropped from under me, my heart was in my throat, my stomach twisted into knots. What on earth were we going to do? How do you move on from that moment? Frozen in time. Only our love for our little miracle would prove to be the force that was necessary to power through those moments.

Fast forward to arriving home with our baby boy. It wasn't easy but just getting to leave the NICU was a small victory to us. And then came the small emotional hurdles around the house, such as seeing his 12 month clothing we had gotten at the baby shower, or even the little elf costume I had purchased for him when we first found out we were having a boy the winter to prior, his baby album, the 12 month photo frame.  The 12 month photo frame is what hit me the hardest. How can I only semi fill up this frame? It was in that dark moment of tears and sadness where I started to live in the moment of now. Every day would be a victory for us and for him. It was then I decided to make every hour, day, week, month special. I chose to pick up my camera and started documenting his life. I did a big monthly photo shoot of him for his frame. Somewhere along the way, I started to relax and push fear aside. I didn't have enough room for fear to live in my life as much as I once did. Rocco continued to allow me to fill up an entire years worth of that frame. We are still going strong at 16 months. He is my miracle. Everything and more.

I'm happy to know that his first cardiologist maybe was misinformed of the complexities of Marfan Syndrome, that no two cases are alike (thankfully!). There has been a learning curve through it all that has been painful from time to time. Yes, his heart is still affected, it's still dilating more than we would like for it to, his valves are beginning to leak more than before, he's maxed out on his medications, and yet growth continues. There will come a day that his first open heart surgery will be necessary. It's a bridge I'm not ready to cross but I know when the water gets too high and choppy-- that the bridge will be sturdy enough to bear our load. Rocco will continue to carve his own path in life. All I know is that it has been so beautiful to watch him grow, he amazes me each and every day. He is our miracle baby.

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Tink and Key is a beautiful faith based company that encourages us to LOVE through the eyes of all of our children. They look forward to sharing encouraging words through their collection of shirts that hold special meaning to their very own family. These words are printed on American Apparel clothing (sweat shop free) using water based inks (kid friendly). This specific raglan "Miracle Baby" tee is soft, comfortable and comes in fun colors - neon pink, neon blue, and neon yellow! Tink and Key even offers "Zipper Club Member" tees for the heart surgery warriors and "Miracle Mama" tees and tanks! 

Please click here to follow them on instagram: @tinkandkey

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Now for some photos of my miracle baby rocking his tee!

Always on the move. Never in one spot long enough to get a non blurry photo!

Walking and squatting are even victories in this household, as he has had low muscle tone in his legs since birth. 

The newest victory is walking up and down steps by himself. He holds on to the railing just like he has been taught. Such a big boy!

 Always finding a reason to show off his belly!

Thank you so very much for reading our "Miracle Baby" story. Thank you Tink and Key for the compassion you show to so many. Your love is appreciated so much!

To read more about Rocco's birth day click here. 

**As an update of his most recent cardiologist appointment in August; Rocco's aortic root has continued to grow and now his aortic valve has begun to leak a tiny amount.  Not the news we wanted to hear by any means but I'm hoping that the leaking remains only a trace amount for a long time. Positive thinking equals positive results, right?

xoxo - Christy

Rebels & Rascals: A woman with a heart of GOLD

I don't even know where to begin with this post but to say that my new found obsession with Instagram over the past two months has brought an angel into our lives. One of the first companies that Rocco began brand repping for was Rebels & Rascals. The owner of Rebels & Rascals, Erica, has always been a sweetheart to us from the beginning, even when Rocco didn't necessarily "win" the chance at being a brand rep based on the voting system that was in place for her Summer Brand Rep search in early July.  (I am no good at getting votes, too much pressure!)  Erica reached out to me and offered him the chance to be brand rep for their fall line of products instead! We happily obliged! 

Then a few weeks passed by and we get another message from Erica, she had somehow stumbled upon our blog here and read Rocco's birth story. She said she was in tears and wanted to immediately send Rocco the T-shirts and welcome him to her team of reps.  We were so excited that first someone actually did come over from Instagram to look through the blog I have put so much personal work into and that he would be repping for another awesome brand of clothing!  They sent him a large package of t'shirts to begin wearing and taking photos in and sharing to our followers on Instagram. 

Now about another month has passed and Erica shares a little bit of personal information about herself to her Instagram followers.  She is a mother of 4 beautiful children. But something else she shared I never saw coming. She says she is fighting a battle against Breast Cancer, and her form of the cancer is called HER2+  a very aggressive type of cancer. Her doctors have changed her time left on earth from 6 months to 3 months to the most recent visit in which they said less than 30 days. I was so devastated hearing her news. I struggle to understand why this is happening to such a beautiful person with 4 beautiful children that may be left motherless and with no other family around for support.  

A few days pass from her heartbreaking news but I can't get her off of my mind.  I then make a post on Instagram about Erica's heartbreaking story and the struggles she must feel every day and about a small struggle we faced that day about Rocco's medicine; how upset and panicked I felt because his insurance wouldn't pay for his medicine. This medicine is necessary and we have to get it refilled every 2 weeks. I am fearful of what may happen if Rocco even misses one dose, we have been warned as to what can happen. His current bottle of medicine was set to expire that evening but I didn't have any new medicine for the next day.  After a few panicked screams to the pharmacist (poor guy) I beg him to make the medicine and I would pay out of pocket, I didn't care what it cost, please just make his medicine.  He hesitantly obliged and we got what we needed that evening. Thank goodness! Erica messaged me with worry throughout the evening, I assured her we got what we needed as soon as we picked it up. 

Two days pass, Erica messages me. She wants to help Rocco with his medical expenses by selling all of her Cowboy & Indian tees she has left on hand and put the money in a fund for us to use when we need to cover a medical expense that insurance will not cover for Rocco. I first told her that I wouldn't want to take away anything from herself or her children. I also explained that I have never asked for any help because quite honestly I'm fearful that if I did ask than possibly Rocco's health would take a turn for the worst as if I'm asking for the universe to make that happen. Its weird but it's just my thoughts. There may be a day when we do need help, maybe when he is ready for open heart surgery - god hoping that it is still years away. But I just could never ask right now. Erica went on to pretty much insist on helping Rocco out, she strongly feels that we have crossed paths for a reason. That God put him in her life for a reason. 

 Here is a photo of Rocco wearing R&R's Cowboy and Indian tee in black

I feel just the opposite of Erica, I feel like God put her in our path for a reason. I am just blown away by her generosity, love, her selfless will to support another human being. I start to cry when I think about her. The struggles she must face every day. To undergo more treatment and be so sick and weak to even enjoy her children or to go about her way and keep the faith that she will be ok. Someone that has so much on her own plate and still wants to help us! She is god sent. She breaks my heart and makes it sing all at the same time. I want to be a better person because of her. I want to know how I can help HER and HER CHILDREN. 

Maybe one day soon what I can do for Erica will come into light, something to show her all the love we feel for her as she has shown for us. All I want is for this brave, kind-hearted, loving woman is to be around for her four young children. 

We love you so much mama and thank you for being so supportive and caring to Rocco. You are a gift in our lives. 

Below are the tees that she is donating on behalf of Rocco, 

the cowboy & indian tee specifically. They are all only $12!

Here are a few more shots of Rocco in his black Cowboy & Indian tee

Click the above link to order your tee! Only $12!

Here are a few photos of Rocco wearing the gray Cowboy & Indian tee

Click the above link to order your tee!  Only $12!

We have promised Erica that we would spread the word.  Rocco is not the only little child that she is donating her proceeds to.  She is donating the proceeds of three other tee sales to help other children in need.  

Below are some of the other tees she is selling to help children in need. 

Giving 100% of her profits to them. 

 The Anchor tee #nevergiveup #presson (also available in gray and baseball tee style)

 The Heart Grenade tee (also available in white and baseball style)

 The Play Hard tee (also available in gray and baseball tee style)

Here is her website again if you know of a child that would love to have a great tee for a great cause! Support a woman with a heart of GOLD giving back to children when she herself is fighting a battle of her own.

Here is a link to her instagram if you would like to find out who else the tee sales are helping!  instagram.com/rebelsandrascalsapparel

xoxo - Christy