Journal Entry

Saturday, October 22, 2005

God saw you getting tired
and a cure was not to be,
so he put his arms around you,
and whispered "Come to me".

With tearful eyes we watched you,
and saw you pass away.
Although we loved you dearly,
we could not make you stay.

A golden heart stopped beating,
hard working hands at rest,
God broke our hearts to prove to us
He only takes the best.

(Author Unknown)

(This journal entry is dedicated in loving memory of our hero and our dear friend - Michael Romano.)

Christi & Michael at CHOP – April 2005

CENSORSHIP:  My journal entry today is filled with sadness.  There have been entirely too many deaths since my last entry; however, I find that writing about these “issues” helps me cope with the harsh, often sad, reality of being human.

So with that warning in mind, here goes:  Thank you so very, very much to all of the kind and precious blood donors who so lovingly donated blood at the Hospice and Christi Thomas Blood Drive on Friday. 

It was a very emotional, very long day.  As I went to check my email before heading out the door very early Friday morning, I was shocked and numb to learn that one of our dearest neuroblastoma fighting friends, who treated with Christi in NYC and in Philadelphia , Michael Romano gained his angel wings just after midnight .  I often referred to Michael as “The Come Back Kid” yet it appears this time God called his kid to come back to His home.  Michael must be playing baseball in the big yards of Heaven now.  Our thoughts and prayers are with our New Jersey friends.

This incredible family had been in treatment with Michael for an amazing seven years – so now you know why Michael was indeed our hero!!  What a brave, courageous, compassionate and downright awesome young man!  We will NEVER forget him!  Michael’s website is in Christi’s Clubhouse.  When we get bad news about Christi, whom do I call?  Sharon Romano and Gina Nichols!!  (Our only NYC friends we lived and treated with who are still in treatment.)  I feel horrible.  Sharon has lifted me up so many times and yet I know that now she is hurting and dealing with astonishing pain. 

I wiped away many tears driving south Friday morning.  I was heading to a literature conference where I was presenting a session for middle childhood language arts teachers.  Many times I thought that I couldn’t possibly go through with my presentation.  I thought about just turning back and going home, yet I knew I couldn’t let down the folks who asked me to teach.  It just again reminded me that I would have to suck it up and pretend that everything was fine and once again it reminded me that we must treat each other with extreme kindness; we don’t know what anyone else is dealing with.

After the conference (which was fabulous – I learned a ton from the other sessions I attended) was over and I was next heading to an evening teachers’ meeting, I called the Romano’s home to express my sympathy.  Then I called Shayne to see how the blood drive went.  That was when my heart fell hard for the second time that day.  From the sound of his voice I knew he was crying and I heard a muffled, “Kathy and Fred” and “dead” in the same sentence.  I said, “What??” and I pulled the van over because again my heart dropped and I again felt numb. 

Just hours after I had left for the conference, Fred and Kathy traveled down the same exact road.  Their van (the same make and model as mine) collided with a semi and they were both killed.  The dear Kathy, 60, was our wonderful neighbor’s Mother and in my last entry I see that I mentioned Fred twice.  (Once in Shayne’s running past their home – knowing safe havens were there if needed and also Fred was the man who questioned Shayne on his training for the NYC marathon.)  Fred, the “youngest 65” one could ever imagine, competed in numerous marathons, triathlons and even the Iron Man.  (He competed in May and June in the same races Shayne entered.)  Fred Fabrizo will now give new meaning to “Fred’s Team” when Shayne runs the NYC Marathon.  Eight days earlier Fredie attended the same conference as Shayne did and they sat together and shared some “high Fives”.  His beautiful and wonderful wife, Kathy, brought Holy Communion to our home many times while we were in isolation and always had a beautiful smile and a kind word to say.  My heart is breaking for my dear friend Laura’s loss.  I’m certain with Kathy now up in Heaven our prayers for Christi will continue to be answered.  Our hearts and prayers are with their wonderful, heartbroken families left back here on earth.  How we wish we could do something to ease their terrible pain and to give them comfort. 

So we finally got around to talking about the blood drive and I learned that it went very well.  God’s people are good!!  Thank you, everyone!  The local radio station - WTTF came and did a live remote.  There were first time donors and wonderful volunteers in attendance. A sweet carload of lovely high school students from Fremont St. Joe’s drove all the way down to give blood.  Here’s a darling email from one of the compassionate kids upon her return: 


We all loved spending the afternoon with you and Christi. Cara, Michelle and I are so bummed that we didn't get to donate today...thank goodness we brought Phillip too. The girls were talking about "next time" as soon as we walked out the door, so hopefully it'll work out better after a while...I need to gain some weight, Cara needs some salt to raise her BP, and Michelle needs to drink water and just chill out. We tried!  


Wow!  I’d love to have a daughter like that.  I bet her mom is proud!

I knew today would have to be a better day.  Unfortunately, that was not the case.  Today I learned of the deaths of two more little NBIV fighters – Jaerah and John.  Christi treated at MSKCC with Jaerah W. who passed through Heaven’s gates at the tender age of eight on Wednesday afternoon, and John T. from California who was diagnosed just days after Christi was diagnosed was called home yesterday at noon; I’ve stayed in touch with these magnificent families for years.  We pray for these very special folks who had very extraordinary, precious children and who now must cope living here on earth without these cherished gifts of life.  The harsh reality of “this beast” (NBIV) haunts us daily and learning of the deaths of so many of our closest little friends is gut wrenching.  So I remember, "God never promised us a perfect life, only His perfect love."

Shayne completed a 15 mile run today; it was cold and gray in Ohio and running past Fred and Kathy’s home was emotional for him.  We are very pleased with all of the support for Shayne and Memorial Sloan Kettering.  Thank you.  Although he has surpassed his fundraising goal, donations will be accepted online through November 6th.  Every dollar goes to a great cause. 

And finally, my thoughts and prayers have been with my Heidelberg/OSU friend.  I visited with Lori at the funeral home on Thursday night as her Mother passed away earlier this week.  Times have been so trying and horrifying for this saint like friend whom I dearly love and treasure.  May God bless dear Lori with strength.

So, if you actually read this entire entry despite my warning, I apologize for all of the “doom and gloom”.  Throughout Christi’s battle I’ve learned that writing helps me come to terms with the reality of life and helps me cope.  I hope I didn’t bring you down and I hope that my next entry will have better news.  Until then, may God richly bless you and yours and keep you safe and healthy in His loving arms.

Only through His grace,

Christi’s Joke:  Sorry, but I can’t peel her from the issue of “American Girl” that arrived today.  (Nonee got her a subscription for Christmas.  Thanks, Grandma and Paw Paw)

Christi’s Health Update:  Christi started vomiting throughout the night last night.  This morning she started throwing up again even before I gave her the first dose of chemo.  It didn’t stay in but a minute before she lost it.  Ugh.  This is so hard.  Thankfully, once the chemos are over for the day she feels decent for the most part. How I hate these struggles and how I wish it were me battling “the beast” instead of my beautiful, innocent, precious little princess. How I love her so!  This is so hard.  It is a feeling of emptiness and helplessness.  Our little cancer friends have dropped like flies.  I do know what is ahead for us.  I am scared and unlike other challenges of life, my ability to work the problem is not in my control.  This “beast” runs the show and tries to rule the world.  However, I do have the ability and the power to control how I am going to face each day and therefore through our loving Father, I shall try to stay positive and upbeat for my dear loved ones I treasure.  I shall continue to drink up each and every moment we share her together and shall try to make the most of each and every day.  Thanks for checking in on our little “Clara Barton”.  We’ve been richly blessed!

Harsh Facts of Childhood Cancer

  • Childhood cancer is the leading cause of death by disease for children in the US
  • 12,600 children are diagnosed on a yearly basis with cancer.
  • Childhood cancer is the sixth most diagnosed cancer in the US , but only receives 1/20th of the federal research monies doled out by the NCI every year.  (Sick, eh?!  That is why we strongly feel the need for fundraising!)
  • 7 out of 10 diagnosed with neuroblastoma, stage IV will die.
  • At any given time there at least 40,000 children in the US on active cancer treatment.

I post this poem here in love for my dear friends who have lost their children:

“My Mom Lies”

- Author Unknown

My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.

Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.

Ask my Mom how she is,
She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?

Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.

She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.

On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"