And so begins our 48 week journey.  The morning went well at Sloan, with good counts, lots of walking on Stef's behalf and team meeting to discuss our plan for the next year.  It all changed for me when it was time to administer the first dose of chemo.  We chose and oral/push drug option for Stef called TPCV.  For the next 4 days chemo will be administered by me round the clock every 6 hours.  It all seemed so simple when Hans and I decided this route...we wouldn't sleep for a couple of days and she wouldn't have to go to Sloan every time she needed drugs.  Well when Dr. G said let's do her first dose and it came time for me to measure and push the dropper into her mouth the easy factor went out the window...I just poisoned my child.  I had to pump my baby with chemotherapy to kill cancer.  All oof a sudden I wanted to jump out a window.  I have given Stefani anti-nausea meds, constipation meds, homeopathic treatments, even shots onto her arm to boost her immune system...but I have never had to give her poison.  Although I know this is to help her, I can't help but feel helpless.  I just pray that this does it.  It is definitely going to be a long year. And hope that at some point this becomes a little easier.  But really how could it.  At the moment Stefi is in good spirits, and hopefully with the help of Zofran and Viserol (not sure of spelling), she will be good to go. 

PS...Thank you so much for being with us today Deb...Stefi and I really needed you there!  Love you

We are exactly 1 week before scans.  At about this time next week we will have results of this highly anticipated scan.  I have started up once again with insomnia, and knots in the tummy, but we have something totally amazing to be grateful for today.  Stefani has started to walk!!!  I have been crying since I saw it before.  Her PT Sue was here, and we were both over whelmed with joy. 

A year ago, I didn't know where we would be.  And although I still don't know what the future hold for my baby, she has made strides and beat a shit load of odds. 

The fact that Stefani is delayed has bothered me in the past.  It has made me so upset to see her struggling to do things that an average child in her age group could do.  But today, I realize that my child, my angel face is ABOVE average.  She has come so far in her short existence and she will continue to prevail...Cancer or not Stefani is a true rock star!  I am proud to be her Mommy and will continue to fight everyday with her and her Daddy and Sister and Brother.  She's a Brown-Felber...with a combo like that, there is no telling what this girl is going to do!

Blessings to my Stefani...we are who we are because of what you teach us each day!  We love you!!!! 

n stands for.  I am grateful to have become a part of it, and blessed to have these woman as part of our story!  It is so hard to go through this process...being a family who is fighting for our daughter's health, but being able to talk about it freely, here, or with someone like Ashley, who just listens, is wonderful.  At least for me. 

A couple of months ago, Hans and I were put in contact with another local family whose daughter has brain cancer (DIPG).  I took the opportunity to speak to the father and develop a relationship through our angst, hope and joy.  Although we have never met face to face, we continue to speak and are the support that I think each needs.  His daughter has never gone through chemo, but has had 31 rounds of radiation and is on an alternative path of treatment.  I have learned a lot from our conversations and would be willing to try some of these remedies if there was cause for it.  He recently sent a hair sample up to Helga in Canada.  I am so relieved that he did this.  I still to this day believe Stefi's treatment has been such a success because of her remedies. 

Our conversation today left me more anxious then normal.  I completely feel for this family because I know the uncertainty you feel when dealing with a child who has cancer...a child who has brain cancer.  There is no feeling in the world like it.  The constant questioning, the constant knots in the stomach, and the fear of the unknown.  It's just an unfair combination. 

We have scans approaching on June 17.  I have been getting more and more nervous and having small panic attacks because of it.  I look at Stefani everyday and am in amazement of her achievements, milestones, demeanor, beauty and light about her.  I want to tell her that life is unfair, but she is going to be fine.  But to be honest, I don't know if she is going to be fine.  I surround her in the positive always, and hope that she feels it.  I hope that her body dismisses the remaining tumor and that it never comes back.  But we just don't know.  I fear that scans will show growth and that our angel face will have to once again endure poison to control it.  Like I said...I try and be super positive, but I can't take any more disappointment.  I'm scared...more life terrified of the unknown. 

I am grateful for all that Stefi has given us this morning and every morning. I am also grateful and saddened that this is all she knows.  It makes it easier for her to go to Sloan and see the doctors and routines, but sickens me that her life has only been about that.

Please pray for Stefi as we approach scans and please put Danielle in your prayers as well.  This family has a special place in my heart and I can't bare the thought of anything happening to this child.

Telling Cancer to STEP ASIDE!!!  XOXOXOXOXO Team Felber

tefani refused to play with everyone for a while...but as the day went on she found a new love for the slide.  Her homework this week from her physical therapist was to practice crawling on an incline.  SO not only did she do that, but she was also practicing walking on an incline.  She loved going down the slide all by herself.  I love these days.  Seeing Stefi interact with Arianna and Benj and all the cousins.  AMAZING! 
A busy weekend ahead, and a great start to the week to come.  Ashley, who is an adopted sister at Adelphi U will be coming to hang with the kids.  We are so excited to have her!  Hoping that more of the girls can come this summer and spend time.  Stef keeps saying "my girl!"  Those amazing women are definitely hers!
Have a great weekend!

ly5 minutes, I still get completely worked up. Visiting a hospital whereI know the care is top notch, but seeing hurt and pain in children andparents just breaks me.  I also think it is because in 1 month we willhave to face the MRI machine again.  It seems crazy to me that, thatmachine controls our lives.  We pray and hope that there is absolutelyno change in the size of tumor that remains.  By the demeanor andactions of Stefani you would think she is just a healthy 2 year old. 
Todayduring PT she walked down our hallway holding onto the wall byherself.  She fights me if she can't do the stairs by herself, or standat a table and feed herself.  She has become independent.  She is showing signs of normalcy in an absolutely abnormal life. 
She continues to inspire us everyday.
Wewill be inspired tomorrow after our visit with Team by anotherindividual who deserves a standing ovation for the venture he is aboutto set out on.  Bill Smith, a man that works with our Tante Janet, istaking time off to ride cross country on a bike in honor of 4charities.  One of them being the Children's Brain Tumor Foundationwhich is our cause.  I am so happy it works out that Stefi and I canmeet him in person as he is sent off at 10 AM tomorrow.  Here is hiswebsite for the ride:
www.bi class="wbr">keride-4-charities.org
Stefani's pictures are featured under the Children's Brain Tumor Foundation Icon.
So that's it for now...No news is good news!  Just watching our baby grow and hit milestones...Life is good!
STEP ASIDE CANCER!!!!!!!!

It has been quite some time since I have sat andwrote anything at all.  Stefani has been doing so well these past fewmonths that I haven't had the need to.  We have a port flush coming upon Friday and I think that is beginning to stir the butterflies up inmy tummy. 
For those of you who don't know, Stefani has been offof chemo since Dec. 23 due to a horrible reaction she had from theCarboplatin drug she receives in her treatment.  Our team could nottell us if treatment would even help the remaining tumor left inStefani's brain stem.  We decided that her health, and giving her bodya break would be the BEST option.  We waitied patiently for Feb 19 toarrive.  Scan Day!  Well scan day fell short after Stefani wasapparently given too much Propofol for her weight and had to be baggedto help her breathe.  Luckily we have not seen any further damage fromthat day, but the fear of God was placed in front of us yet again.
On March 18, Stefani did have her scans.  The doctors and nurses were more then kind and accomodatingto our needs that day.  She was weighed naked, so that NO mistakescould be made, and everything worked out like it should have. Stefani's tumor showed a little bit of swelling, however, not enough toeven assume it was growing.  She is luckily still on a break and willbe rescanned on the 17th of June.  At that time if in fact the tumorshows growth we will discuss another drug to use or some alternativedrugs that have been presented to us by another family who is walkingin our shoes.  It's so tough to even think that Stefani will ever needtreatment again.  But we know that this is going to be a chronicdisease that will be fought life long.
On the upside our littleangel face has not only been getting onto her belly, but she is nowcrawling, pulling to stand, feeding herself, putting her shoes on byherself, walking with assistance, climbing stairs by herself, comingdown the stairs by herself, speaking sentences, coloring, understanding EVERYTHING, and being the toddler she is supposed to be.
Stefiturned 2 on April 1.  I can hardly believe she is 2.  A year ago Icouldn't see the future, I couldn't buy her things for the followingyear because I just didn't know where or if she would be.  I see thefuture now...and it has her smiling face all over it. 
It reallyhas been an incredible journey from 1 to 2...she has a whole set ofolder sisters at Adelphi who she loves dearly.  Every morning she looksat her Jersey and banner hanging on her wall above her...and sheknows.  I talk about "the girls" and she smiles.  We miss them anddefinitely will be getting together soon.
Arianna and Benj continue to be inspiring siblings teaching her to fight back, talk back and bad words...LOL...asmuch as I get mad at this...I am laughing right now as I type.  This iswhat kids do.  Arianna and Benjamin are true blessings and we love tosee the kids interacting together.
Pleasecontinue to pray for Stef.  We believe that this has helped her toremain strong.  It helps us as well.  We continue to pray for all ofour cancer family friends and our friends in heaven.  All our love-TeamFelber