Thursday, January 22, 2009

Reality Starts to Set In

Disclaimer - if you're not in a mood for a tear-jerker, skip this entry. . .

The reality of Isabella's cancer is starting to sink in.

A short time after her surgery, I had gone to one of the school assemblies to see Annalise's class sing. I saw Mrs. Stelly's kindergarten class and actually scanned the group to see if I could find Isabella even though I knew she could not possibly be there. A couple of weeks ago I was waiting to get Annalise at the bus stop, and while watching about a dozen kids unload, I envisioned Isabella climbing out, too. Then suddenly there were no more kids and the doors shut and the bus drove off and I had to admit that she really was in the hospital.

I have finally stopped trying to find Isabella in her bed when I wake up in the morning so that I can tell myself everything's OK, it was just a really, really bad dream.

I am a member of this on-line support group for parents of kids with brain cancer. People offer some really good advice on everything from sibling care to meds to new protocols that they've found. Normal, non-medical people discuss medication side effects, dosages of radiation, and the latest research studies they've come across in their desperate search to find something else to try. I'm getting used to the "lingo" - people often sign their names with "mother of (name), ___ years old, diagnosed (date) w/ (cancer type), chemo (dates), radiation (dates), recurrence (dates), now on (meds/ protocol)." Or if they have lost their child they say, "mother to Angel (name), forever 11." Or forever 3, or forever 17. Then I suppose most move on to the bereavement support group.

Every once in a while there's a post that someone's child just lost their battle. One that really upset me happened a few days ago. Her boy was in 5th grade and I didn't know them personally, but just found out he was treated at NYU also. She wrote, "As difficult as the last two years have been for Jacob, the end was peaceful. Lying between us as we recounted stories and sang to him, Jacob just went to sleep. Pain free. At home." I still cry every time I read this. I told Roneil I wouldn't have any stories to tell. I wouldn't be able to sing if I knew he was dying. I COULD NOT GET THROUGH THIS. My mind starts to wander, and I think, what did she do with her 6 year old son during all of this? When does she call someone to take the body? And then my mind screams, "Stop thinking about this! This will not happen. This CANNOT happen!"

One of the moms created a "Wall of Courage" that she displayed at a local "Relay for Life" event. She just created a virtual version of it to circulate around:

Watch the video - you should see these beautiful children. The author included that, "Unfortunately, there are a number of children that have since become angels as this wall was created in May of '08. Please feel free to circulate and share this link."

When I do literature or internet searches on Isabella's type of tumor (I can't seem to stop myself from doing this), the information is so dismal. I try to cling to the one sentence that talks about the occasional exception - there are a few reports of children surviving.

Why did this have to happen to my precious Isabella? She never did anything wrong. She is a good and kind and smart and funny and friendly and lovable girl. No one could ever deserve anything like this. No one should ever have to go through this.

I cannot lose her. I would not be able to go on.

I am having a very difficult time.


  1. Julianne, no matter what remember that you are not alone.


  2. today i spoke with my dear friend and colleague Julianne who I have known for many years and have had the privilege of working beside her. I cannot tell you-because you already know, how incredibly difficult this experience has been for her and her family. When i first got the news, i couldn't believe it=i kept asking myself how could this be? how could she cope? what could I do? the thoughts have been intense and overwhelming. Julianne is so strong and so amazing, I want to tell you all just how much. I wish you the most love and strength for you and for your family. I wish i could see your daughter and tell her how amazing her mother is-a dedicated physician who demands only the best for her patients, who has taken the time and i mean incredible time to care personally for each and every one of her patients. And if you think she is good with patients, imagine how she is with her children. I want to tell the world what a beautiful mother you are-so kind and caring and careful. Every tuesday when i came to work, there she was pumping pumping pumping, that darn pump she never stopped-always trying to do the best she can-making sure to give her children the best nourishment, the best care, the best love.... And in spite of this incredible challenge, she is still doing it, can you imagine? for those of you who don't know Julianne I hope i have filled in some gaps-she has been courageous and she continues to be one of the most amazing women you could ever know. God bless to you and your family-remember how much you are loved and in our prayers-a night doesn't go by that i don't think of you-if at times i am silent it is because your heartache is overwhelming and i cannot find the words...but when i think of who you are and of how you are and of what you are-i have no trouble at all. I miss my friend, your patients miss their doctor, there has been a void in our work, our hearts and our lives without you. You must go on-as i know you will-you are loved by all that know you-you are isabella's strength-as she is yours-she is and always will be with you-her dear and most beautiful mother. LB

  3. Isabella, I agree with your moms comments. You are truly a wonderful girl. I should know I was one of your teachers when you were in the two year old room at All Saints Daycare. I love you and think of you often. I will pray for you and your family. God bless you, Barbara Blackmon.

  4. Hi Julianne & Roneil,
    God bless you and your family. Thank you for the updates. Just hang in there! We're all praying for Isabella's speedy recovery.

    Victoria Icatar-Abbarin (Toronto, Canada) & The Icatar's in Aklan, Philippines

  5. Hi Julianne,

    Hang in there, you have an army of family and friends standing by you. There is no reason that Isabella can't be one of those exceptions! You are "Mom" and that makes you stronger than you know and you'll see that that extra strength will kick in whenever you and Isabella need it the most. Please remember to let me know if there is anything I can help out with.

    Suzy Buffone

  6. Julianne,

    There are no words that can make you better or make this go away, however please know that we are all praying, praying and praying some more. Thank you for sharing Isabella and her days, good and bad everyday with us all. Thank you for letting us in on your family's most private and vailiant fight and we do hope you know that we are all here, no matter when or where, just call on us!

    So much love to you all.

    Marybeth Darcy


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