Levi M. - Quilt Finished in 2007

Born: February 29, 2000

Illness: High Risk Medulloblastoma, Hydrocephalus, Posterior Fossa Syndrome

A Thank-You from Levi's Family!

Written on September 10, 2007

We received Levi's quilt on 9/1/07 and it is unbelievably beautiful!!!  Levi was at his dad's for the weekend, so when he came home I pulled out the box and let him tear into it.  His eyes were huge and he was so excited!!  We looked at each square with awe - wow, the detail is so amazing!!  And the places they come from!!  We had several from Lexington, SC which is where his dad's family lives, so that was exciting, too.

Just to let you know  - there is a fight every night between Levi and his sister Kayleigh over the quilt.  Finally they agreed to sleep together to share it.  That's typical Levi, being so kind and caring about others.  He has had a blanket we call "night night" since he was born.  This quilt has become more important to Levi than night-night!

God bless all of you!!

Love,

Melina and Levi

Levi's Story

Written by Levi's mom Melina in August 2006

Levi was a miracle baby since conception.  He was prayed for three long years before he was even conceived.  The day I took my pregnancy test and it was positive, I hit my knees and prayed a prayer of thanksgiving to God.  I had been told I was not able to conceive another child, for unknown reasons (how his sister was conceived after him is another miracle).

Levi was born three days after his brother Ethan's sixth birthday on February 29, 2000.  That's another very special part of Levi, that he is a Leap Year baby.  He weighed 7 lbs 13 oz and was 21 inches long.  He had a head full of hair and the minute his head was delivered, he screamed so loud that his grandparents heard him all the way down the hall.

Levi's dad and I split up in 2002, while I was pregnant with Levi's little sister.  Kayleigh was born in August of 2002.  Levi is very close to both his brother and sister.

In May of 2004, Levi fell while at preschool.  The teacher said he just lost his balance.  He had a huge knot near the corner of his eye where he hit a table.  I wish so much that I had taken him for a CT scan, but the Peds office said if he didn't knock himself out and seemed ok, he probably was.

In August 2004, Levi began complaining of headaches.  I took him to the pediatricians office several times - they said it was a sinus infection and gave him an antibiotic.  Being the worrywart I am (and the fact that my grandmother died of a brain tumor) I asked if this could be the case with Levi.  I was told no, he would have more symptoms.  After 3 doctors visits, Levi's dad called me one day while Levi was at his house and told me Levi woke up with a stiff neck.  He took Levi to the doctor's office was more and was told it was a pulled muscle.  We were told to force Levi to use his neck and to massage it.  After week of Levi crying with his head hurting and his neck still not moving and the fact that he had slept 18 hours the day before, I took him back to the peds office and REFUSED to leave until they found out what was wrong.  The pediatrician spent a long time looking into Levi's eyes and ordered bloodwork.  He told us to eat some lunch and come back.  He ordered a CT scan that afternoon (CT wanted to put him off until the weekend, but I refused - told them NOW!).  I knew when I looked through the window at the techs that something was wrong.  I went straight back to the pediatricians office and refused to leave.  Dr. Payne came out and sat down with me.  I remember hearing several phrases "CT was abnormal" "Fluid on his brain" "mass in his brain" but no real sentences.  By then I was hysterical.  I call my ex husband, my dad and my fiancee, who came to pick us and took us to the children's hospital.  Levi had surgery the next day to remove a large brain tumor, diagnosed as medulloblastoma, which was totally resected.

After surgery, Levi developed Posterior Fossa Syndrome/Cerebellar Mutism.  All he could do was scream and shake.  He went into surgery begging for something to eat and promising me he would be good and take his medicine.  It was four long months before I heard his beautiful voice again.  He had to relearn how to do everything.  He had no muscle tone at all.  Even he eyes couldn't focus - one would look one way and the other the opposite.  He had a feeding tube inserted in his belly because he could not swallow and a port inserted in his chest to administer chemo and draw blood.  He also had a VP shunt put in, because his spinal fluid could no longer circulate like it needed to.  Levi was considered high risk because the cancer had metastasized to his spine (a sugar coating over a small part).  He had 31 radiation treatments (whole brain and spine, with boosts to the tumor site and the mets on his spine).

His chemo regimen was horrible.  He almost died several times due to the severity of the chemo.  He lost down to 26 lbs and his oncologist said at that point he was at the verge of going down and not coming back.  He also had a shunt revision in 4/05 and went into septic shock in 5/05.  He pulled through and finished chemo on 7/23/05!!  What a hero!  His thyroid no longer works, one of the many side effects of the strong radiation treatments he received.

He had MRI's every three months until August 2006.  With this one being clear, he now goes every four months.  He has relearned to walk (a little clumsy sometimes, but who cares!) and loves to play.  He starts kindergarten on 8/23/06.  We are always praying for a cancer free life for him.  Levi is a beautiful, kind soul.  He is my reason for living and I love him so, so much!!