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”.