It all started on Saturday, December 18th, 2011…my husband and I could tell that Emily wasn’t feeling well.  She was playing all day and then all of the sudden she had no energy and was complaining of stomach pain and had a mild temperature.  We gave her Tylenol and ran around the house doing things and about hour and a half later Emily still had a very high temperature and complaining her stomach hurt.  It was late so we called my mom and she headed to the house to stay with her sisters, Jessie and Brianna. The hospital wanted to do a CT Scan because they thought she had appendicitis and wanted to check for that.  We were very worried about the radiation from the CT Scan affecting her and wanted them to try any other route to see if she had the flu, strep throat or anything else.  So, they exhausted all matters and nothing showed the cause of a temperature and the belly pain.  So, they did the CT scan and thankfully Emily slept through the whole thing.  When the doctor came into the room at 430AM in the morning and pulled a chair by the bed to sit with a grim look at her face, we knew something was wrong.  This is when our nightmare began, they found a mass and was not sure what that mass was.  Emily was then sent by ambulance to VCU Health Systems and our life forever changed. We had to get someone to watch Brianna and had Jessie go to her dad’s, because my parents wanted to be there with us as the hospital. Doctors upon doctors came into the ER room, it was very early in the morning it was 6AM and no longer were Doug and I exhausted, our exhaustion turned into complete worry about Emily and what it was. After sitting in the ER for what seemed liked forever, Emily was moved to the Floor 7 East at the hospital for pediatric.  This floor was strict where anyone entering the floor my show their ID, and parents must allow them to come in.  This was very stressful on us all, I still had to work as much as I could but worry about Emily.  Emily underwent MIBG scans, Whole body bone scan, MRI and she also underwent surgery to see if they could remove the tumor mass and to get a biopsy of it.  The surgery was done on 12/23/2010 and I will never forget this day for as long as I live and it will be added into our days of things we remember. Doug and I were beyond scared out of our minds, worried of the “what ifs”, worried about how her body would handle it.  Before going in she was happy and fine and could eat.  I remember sitting in the room with Doug, Emily and I and Emily was scared.  I was holding her and she wanted me to sing to her.  I was singing, “You are my sunshine, my only sunshine, you make me happy when skies are gray, you’ll never know dear how much I love you, so please don’t take my sunshine away!”  She didn’t want me to stop and she just stared at me as I was singing it to her. They have her the anesthesia and Emily fell asleep.  Doug and I fell apart in the room, crying.  It was the horrible to let her go, and I almost didn’t.  I remember telling them “Please take care of my little girl and bring her back to us!”  The 4 hours of surgery was pure agony for Doug and I, it was a long wait.  When Dr. Bagwell came out and gave us the news that it looked like ganglioneuroblastoma and that she was doing great.  Doug and I couldn’t wait until she came out. On this day (2 days before Christmas) Emily was diagnosed with ganglioneuroblastoma,with staging still to be determined based on other scans.  The next 5 days were long, because Emily couldn’t eat or drink anything and this was really hard because she just wanted water and a donut.  How can you tell a child no they can’t eat or drink. The doctors were a little stumped with Emily’s information.  They only have 3 cells in her bone marrow aspiration and the MIBG found 4 spots on her legs that were asymmetrical that confused them very much.  They were pretty sure it was Stage IV Neuroblastoma and talked about the treatments she would need to endure.  But off of their confusion, we wanted a second opinion.  We made a trip to Sloan Ketterling on January 10, where Dr. Modak confirmed Emily was a Stage IV, Neuroblastoma and we would need to start treatments as soon as possible.  Emily started her first round of many rounds of chemo treatment on January 18, 2011. 

Emily has undergone 4 rounds of chemo so far with many other hospital stays for fever, RSV and fever.  This has been really hard on us watching Emily undergo treatment that as she goes further it continues to be harder and harder on her body.  She still has 2 mores rounds of chemo, another surgery which she will have done at Children’s Hospital of Philadelphia after the 5th round of chemo, two stem cell transplants among everything else.

Please send all of your love, thoughts and support to Emily.  She will be 4 on May 30th and really loves your thoughts, and prayers.

Stop by her facebook page, http://www.facebook.com/emilysjourney and leave her a message and if you would like to follow her journey, you can do so on her caringbridge at http://www.caringbridge.org/visit/emilys or on her blog at http://www.emilyhubbel.com

Our son Clayton was diagnosed on June 3rd of 2009 with stage three-high risk Neuroblastoma and went through 6 months of the most intense chemo they could at Helen Devos Children’s Hospital. In October of the same year he went through 11 1/2 hours of surgery to remove the tumor. After all the biopsy’s of the tumor they could find no cancer cells. He is cancer free and doing great!

Marissa was diagnosed with stage IV Neuroblastoma at the age of 16 mos old.  We quickly became friends with the Boyte’s during Marissa’s first treatment and Lillie’s second treatment of 3f8.  Marissa and Lillie were two peas in a pod & from what I hear, still seem to be in Heaven!  I will never forget our time that we spent with Lillie.  Marissa became an Angel on Friday, June 13, 2008.  A few months before she passed away, she said that Lillie was talking to her and Lillie’s arms were spread wide open…Marissa demonstrated for me.
prostate cancer symptoms

My sweet son Keegan Ray was diagnosed with Neuroblastoma stage 4 on July 31st 2009.  At the time he was barely 3 months old.  Today he is 7 months old and will be undergoing his 3rd cycle of chemo on December 21st.  Keegan has had two surgeries (a biopsy and a tumor removal).  He may be tiny…but he is MIGHTY! He is our SUPER KEEGAN! Cancer is something that blind sided our family, we didn’t see it coming.  And now it is something we fight every single day.  I’m afraid of what the future holds, but I have to have faith that God is in control and it will be alright.  Keegan’s doctors at the University of MO are wonderful and we thank God for everything he has done for us. http://www.caringbridge.org/visit/superkeeganray

My daughter Kaitlyn was diagnosed in 2003 at age 3 with Neuroblastoma Stage IV -MYC Non-Amplified, unfavourable shimada. With a tumour filling her abdomen, which had spread to her neck, knees, hips and cells in her bone marrow lining, she was placed on a tough treatment protocol (COG ANBL00P1), which consisted of 5 rounds of high dose chemo, surgery to remove as much remaining tumour as possible, two rounds of mega chemo, with Double Stem cell Transplants/rescues, followed by 10 rounds of radiation and six months of Accutane (Biotherapy). At diagnosis we were given the terrible odds of less than 20%.

Kaitlyn was doing great but relapsed in 2007, unsure of where we were headed we waited to do follow up scans a month later, miraculously, Kaitlyn’s relapsed cancer was regressing on it’s own. It was decided to allow Kaitlyn time to heal, and with no further treatment she is now 10 years old in 2009.

Kaitlyn has learning difficulties and will soon have surgery to correct a massive overbite, has major teeth and mouth problems,  but is happy and healthy.

We thank “Lillie’s friends” for the hope they are bringing to the Neuroblastoma world. We will never forget Lillie Boyte, despite never meeting her.

Ila Jean was diagnosed with stage IV Neuroblastoma on August 29, 2006. The feeling in the pit of my stomach when I heard the word cancer still lingers to this day. Ila Jean has been in constant treatment since her diagnosis. We started at Albany Medical Center and then continued treatment at Sloan Kettering. We met Lillie and her family during the summer of 2007. I am happy to have met her and she will never be forgotten. I will always remember her smile and her beautiful little face. Ila Jean is now showing no evidence of disease although we still continue with treatment. With the aggressiveness of this disease, we press on to keep it at bay and pray it never returns. Sadly we have watched so many of our friends become angels…too many to count. Thank you Michelle and Cory for continuing the fight in Lillie’s memory. God Bless.
http://www.caringbridge.org/visit/ilajean

Marissa’s Story…

Marissa was diagnosed with stage IV Neuroblastoma at the age of 16 mos old.  We quickly became friends with the Boyte’s during Marissa’s first treatment and Lillie’s second treatment of 3f8.  Marissa and Lillie were two peas in a pod & from what I hear, still seem to be in Heaven!  I will never forget our time that we spent with Lillie.  Marissa became an Angel on Friday, June 13, 2008.  A few months before she passed away, she said that Lillie was talking to her and Lillie’s arms were spread wide open…Marissa demonstrated for me.  We love and miss you Marissa and Lillie.  http://www.caringbridge.org/visit/marissamonroe

Our sweet daughter Sophie, who is 10 months old now, was just diagnosed with stage 4 neuroblastoma on March 11 when she was only 8 months old. I know you guys know exactly what my husband and I are going through. She is being taken care of by the wonderful group at Brenner’s including Dr. McLean. Sophie is handling her treatments well so far. God bless you guys; I just cant imagine. I cried watching Lillie’s video. I am overwhelmed sometimes. It seems like they have a good plan intact, so we are hopeful that Sophie is in the 40%. I am trusting my Lord to see us through. Please contact me if you would like to. We live right above you guys in Rockingham county. I would love to contribute to Lillie’s Friends in some way. We also have a caringbridge page if you would like to check that out (we will be adding pics soon) http://www.caringbridge.org/visit/sophiemabe  God bless you again and my deepest sympathy to you guys. Your sister in Christ, Lorrie Mabe

DEVASTATED, DISBELIEF, as if the world had been shifted off its axis.  This is how I felt the day I rushed to Winston Salem to be by my sister and her husband as they were given the news that Lillie, who had seemed perfectly healthy 5 days before ,was now in the fight FOR her life.  Even though heartache would follow, there were more “better” days than “bad” days in the 10 months that followed.  We would enjoy Lillie jumping on the bed just hours after her belly had been opened up to remove the primary tumor.  So much so, that the doctors released her early figuring if she felt well enough to jump on the bed, she could get out of the hospital.

Once, when Michelle and Cory had to change “buddy” (her port a cath dressing), I was outside the bedroom sitting in a chair.  Her screams just tormented me, but it had to be done.  When they were finally finished, I heard her asking for me.  She flung open the door and into my arms to snuggle with her Aunt Tammy.  Michelle and Cory emerged red, sweaty, hot, and clothes in disarray.  I just thought to myself, “YOU GO GIRL”  Lillie was the spunkiest GIRL I had ever seen.  Only the very last week ,was she not ready to play or bake pink cupcakes piled HIGH with pink icing.  Lillie taught all of us never to take today for granted and to never let a family member leave without a hug and telling them you love them.  I have often said that EVERYONE should have a “Lillie greeting”.  When I would go for a visit, as soon as she would see me, she would start jumping up and down and running in place.  Hardly able to contain herself until I opened the door. So until we meet again Lillie….....LOVE YOU…..Aunt Tammy

The first time I even heard of neuroblastoma was Lillie Boyte’s diagnosis. To hear it described as a “rare and aggressive childhood cancer” was terrifying. As a mother of two young children, my heart broke for Michelle and Cory, friends of mine since college. While a 10-month struggle seems short in retrospect, watching the battle from the sidelines during those months felt like an eternity. The moments of joy and hope were scattered among much longer periods of treatment and grueling battle. I admire Michelle and Cory for walking publicly as Christians down through this unimaginable road. It is an honor to join them as a “Lillie’s Friend”.