Sunday, March 18, 2012

Here we go...


We created this blog to inform all of our family and friends of our current situation and to update you all on Gabriella.  Honestly, I don't even know where to begin.
At the end of January, I noticed a small tag of skin protruding from Gabriella's "private area".  I called the doctor immediately and had her seen the next day.  The doctor said it was noting to be alarmed about and that was that.  I was relieved, thinking the worst but being reassured that it wasn't unusual. A few weeks went by and we had an upcoming schedule for her 4 year well child check.  I had kept an eye on this skin and wanted our pediatrician to take another look.  The doctor looked again and noticed that it was getting a little bigger.  She prescribed some cream to see if it would decrease the redness and see if it would shrink.  After about a week, this skin still continuing to get larger.  I emailed our doctor and she too was starting to get concerned.  She ordered x-rays and a pelvic ultrasound on Monday, last week.  We were in by Wednesday.  When they were doing the ultrasound (US), I could tell that something wasn't right.  Her uterus looked large and when I asked, the tech couldn't answer.  I understood.  She couldn't give me any information but this is when my panic started to really become real, that something really wasn't right.  She took a lot of pictures and brought the radiologist back in.  It ended up that her uterus is twice as large as a 4 year old's uterus should be.  There was also concern about an enlarged ovary, or what they think is an ovary.

After the results were back later that day, we were referred to a pediatric gynecologist, Dr. Hillard.  She is part of Lucile Packard Children's Hospital and has a practice in Mountain View.  They were able to get us an appointment for March 21st.  Ok, so we wait.  The weekend went by.  On Sunday night, I noticed this "mass" now getting bigger.  I panicked and realized we couldn't wait till the 21st so first thing Monday, we were on the phone trying to get an earlier appointment.  They fit us in to see Dr. Hillard on the 14th, wednesday.

So Wednesday, we took Gabriella and Bridget up to Mountain View.  We were there for the morning till early afternoon figuring out the next steps.  We still didn't know much but she did say that this is abnormal and we had to further examine it.  The next step was to get an MRI done before a vaginal exam, a vaginoscopy, and a tissue biopsy.  These all needed to be done under anesthesia.  There has definitely been a large coordination between Lucile Packard organizing the procedure, MRI, our pediatrician and everyone involved.  As we were making phone calls, we received another call from Dr. Hillard.  She informed us that we needed to meet with Dr. Luna, a pediatric oncologist.  I've never felt so overwhelmed at that moment and couldn't believe what we were hearing.  Adam and I both could have passed out but held on...to each other and listened to what she had to say.

On Thursday evening, we packed our bags and drove up to stay the night in a hotel in Palo Alto.  We wanted to be ready to meet with the oncologist early in the morning.  We were scheduled to show up at Lucile Packard at 8am for lab work, a chest x-ray and to meet with the pediatric oncologist, Dr. Luna-Fineman.  Needless to say, friday was the longest day of our lives.  We also met with another doctor who specializes in soft tissue cancers.  They both took a look at this tumor and knew, as Dr. Hillard did, that this was urgent and needed to be taken care of ASAP.  

Nana and Papa (Loretta and Richard, my parents) and our dear friend Bill were there with me, Adam and Gabriella while Grandma and Grandpa (Diana and Dan) stayed at home with Bridget and Ellie, or dog.  I can't begin to tell you how hard it was to walk into the "Cancer Center".  Adam and I could hardly hold ourselves together.  It was unreal.  Just unreal.  I ask myself, how the hell did we get here?  Unreal.


HERE IS WHAT WE KNOW SO FAR:


  • We know it is a tumor in her pelvic region which is highly likely to be cancerous.  
  • They believe it is possibly a rhabdomyelocarcoma but biopsies and the pathology report will conclude. 
  • This tumor is protruding in Gabriella's pelvic region, growing inside her uterus and expanding it to be twice as large as it should be.  
  • The structure that appears to be her right "ovary" is two or three times as big as her left and they are not totally convinced that it is an ovary. 
  • We will have to treat it by removing the tumor or shrinking it with meds, chemotherapy or radiation depending on the location and the type of cancer it might be. 
  • Her chest x-ray is clear and blood work is normal, including a negative beta HCG (which is a pregnancy marker).  


Procedures happening this Monday, the 19th that will be done under general anesthesia:
1) A CT scan to look for any other areas that are abnormal,
2) An MRI to see where this tumor is originating from and what structures are involved,
3) A vaginal exam and vaginoscopy to look inside and a tissue biopsy

They will be staging the tumor I believe on Monday but we will know more when we get the results of the pathology report and be able to put a plan in place.
We're checking into the hospital at 7am on monday morning.  We might possibly need to stay the night on monday night but we won't know that until that day.

WHAT WE DON'T KNOW:

The origination of the tumor.
What type of cells the tumor is made of.
If they will be able to remove it on Monday...depends on location and other things.
If they will be able to remove it without taking her uterus and/or ovary.
How exactly we're going to treat and remove this...depends on what it is.

A lot of information will be gathered next week and we will be able to determine a plan of action.

WHAT WE NEED:

A lot of positive thoughts, prayers, love and to be surrounded by our friends and family.  Not all the time of course but if there was ever a time where we needed you, our dear friends and family, it would be now.
Please don't be afraid to call us, text, send an email, etc.  We need all the support we can get right now.  If either of us don't feel like talking, we won't answer.  Or we might just not be able to answer our phone.  If you need to call just to say, I'm thinking of you, or to laugh or cry, please call!

I don't really know what all we are going to need but I know food has to be one of them.  We have friends organizing this for us.  If you would like to contact them, here is their info:

Ronnie Boose: ronnie.boose@gmail.com
Melanie Turowski: msturowski@sbcglobal.net
Danielle and Pat Winters:  daniellina@comcast.net

Other friends  (BESIDES FAMILY) who you can contact for information:
Brook and Alison Mancinelli
Bill Sylvester: nine04man@mac.com
Brittany and Zach Smith
(Guys, can you post your numbers for me?  Thanks)


Lucile Packard and all of the doctors involved have made us feel like Gabriella is the only patient they are taking care of.  They have been phenomenal about coordinating and putting a plan into action.  This is something that no one EVER wants to deal with and it has felt like a nightmare.  But it is here and we are going to deal with this.  We are collecting our army (you all) to fight this and we are hopeful.  I will do my best to update this blog whenever I can but if I can't and you really want to know some information, please contact one of the people above.  We are SO THANKFUL to have such positive wonderful family and friends in our lives.  WE CAN AND WILL FIGHT THIS!!!

11 comments:

  1. hey <3 my prayers and all my positive thoughts are with you and your family right now. I'm not any good at food prep. but, if you need me and jack to do some kid or dog sitting we are here. I'm off Mondays and thursdays. and my off weekend is this weekend. let me know, we're here for you.
    cathryn Abney

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  2. We love you very much. You are in our hearts and prayers constantly. Please let us know - anything we can do to help, we will do it! I know you will win this fight! Our good friend John Atwood's 4 year old daughter Laci just had rhabdo removed from behind her ear - it did not spread and they removed it all. I am glad they are acting swiftly to get rid of the tumor - whether cancerous or not - so that she can begin a new wonderful chapter in her life. I am confident this is just a moment in time and you will win this fight. God will look over you and your family. We love you!!!!!! Debbie (and Mark)

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  3. Here's my contact info.

    Bill Sylvester
    408-497-8856
    nine04man@mac.com

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  4. HI Adam and Kristen,


    I have no words I can say that can demonstrate how much I feel for you guys. I know that this must be heart breaking but I do truely believe that G will beat this. Matt and I have had you on our minds and hearts since we heard and my little ones are saying their own little prays for G. We will pray daily and send lots of positive thoughts your direction. We are here to help in any way we can. I can always come down and babysit ( even for an hour) if you are in a bind, we can pick up your dog and dog sit, Matt will do his best to be available for time trades. Please do not hesitate to ask. You guys are an amazing family and I know you will endure. Know that we are on team G!!
    xoxo
    Kristi 619-347-4397
    Matt 619-865-1853
    Connor
    Kaylee

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  5. Sending our prayers!

    Jen and Peter Cianciulli

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  6. We are officially part of your TEAM, and therefore have NO DOUBT that we will fight this ugliness together and PREVAIL!
    GO BABY GABRIELLA!!
    Kristin and Adam.... we know this is the scariest time of your life, but hang in there and try to stay strong! You have your army behind you and an amazing staff of doctors to beat this! We love you guys, and are here for anything you need!
    xxxxoooo

    Jan and Bryan

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  7. Kristin & Adam,

    We are praying for you.

    Bob & Denise Humphrey

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  8. Hi Kristin and Family,
    Don't know if you still remember me, we used to work in ICU Kaiser, I moved to a diff department 4 years ago.
    I was reading this blog and I am crying myself, this is so unfair for a little child like G. I don't know what to say, and I don't know how can I comfort you. I am praying for G and for the whole family. For Him to give you and your husband a strength to fight for this. Be strong! I live in West San Jose, but let me know if I can do anything, I have a 3 year old girl and if you need someone to watch your little Bridget, she can be a playmate for my daughter, I can watch her. My email: strell866@yahoo.com, 408-472-4054.Take care , be strong and your family here in Kaiser are here if you need help or just someone to talk to. We are all praying for a quick recovery of big sister G.

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  9. Adam and Kristin,
    With two little girls ourselves, we know this is the biggest nightmare that a parent has. We are and will continue to pray for Gabriella. You both are amazing parents and you know more than anyone what is best for little Gabriella. We will help out in any way you need, cooking, babysitting, dog sitting, feel free to ask. We love you and your family and know that God will provide you with the strength and courage to keep going for little Gabriella. Know that when you are too weak to continue, that God carries you the rest of the way. He has a purpose for little Gabriella. We know that she will fight this, and we pray you can get more answers. Please feel free to call us anytime if you need anything. (831) 566-7622. We love you all and will keep you in our prayers. Robert and Erin Asamoto

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  10. Jesus, I am reminded of how you healed the daughter of Jarius in Mark 5. Lord, please do this on behalf of Gabriella. Heal her of every trace of this tumor. Even now Lord we ask that you would reverse the growth until it completely disappears. Put your hand upon her body and purify her body of any malignant cells. We pray that in your compassion and deep love you would restore her completely to her parents in full health...just like you did for Jarius. Manifest your power and increase our faith for a miraculous healing. In Christ Name. Amen.

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