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Kate’s Story

Thank you for following our daughter Kate's journey. We ask for your prayers during this incredibly difficult time.

Monday June 29th, 2009 was supposed to be a day filled with summer fun. The kids and I were going to the water park to celebrate summer. However, I noticed that a slight tremor in her right hand that had developed over the past few days had notably worsened. We decided to take her to her Pediatrician, just for safe measure. A CT of Kate's head was ordered. We proceeded to Phoenix Childrens Hospital for a stat CT of her head. That evening I, Kate's mom, was taken into a room alone and told Kate had a large tumor on the left temporal lobe of her brain. The world seemed to stopped for us that day, but our long journey had just began. Kate was directly admitted to the PICU. One minute thoughts of the water park the next our child is critically ill in the intensive care unit awaiting emergent brain surgery within a matter of days.  We would have never chosen to be a part of this journey with childhood cancer, but it was chosen for us, and our sweet Kate. She is now in the Phoneix Children's Hospital undergoing treatment for this disease.

Kate underwent a craniotomy with tumor resection on July 3rd, 2009. They unfortunately were only able to remove 50% of the tumor due to it's location in the left temporal lobe of her brain and the fact that the tumor had wrapped itself around the left middle cerebral artery to her brain. Kate experienced right sided paralysis immediately following surgery along with the loss of her speech. She has since regained much of this, however her right sided weakness still continues. 

After a few days of intense waiting the pathology report was in, Kate was diagnosed with a very malignant, aggressive brain tumor called a supratentorial primitive neuroectodermal tumor or sPNET. Our hearts felt broken. Long term prognosis and outcomes weren't encouraging so Kate has been put on a study that is showing a little more promising outcomes, hopefully a better chance at survival and less long term side effects. She is currently undergoing the Head Start 3 Study out of Los Angeles but doing it at Phoenix Children's Hospital. The study involves the initial brain surgery, 5 round of very intense chemotherapy with possibility of a subsequent brain surgery and then another round of chemo with a stem cell transplant. We are hoping to avoid radiation after transplant. Kate is also in physical therapy and occupational therapy and has been released from speech therapy.

We believe strongly in the power of prayer and the ability of Jesus to heal our precious daughter. We are asking others to join us on this journey and fervently pray for our Kate. The road is long and unbelievably hard. We have 3 children, all who are intensely affected. Olivia is now 7, Kate is 5 and Will is 4. Please keep all of us in your prayers as we try to walk this journey of childhood cancer. Thank you. 

As of September 29th Kate was readmitted to begin her 3rd round of chemo. She will be hospitalized for the entire round.

January of 2010 Kate finished her 5th round of chemotherapy. Her subsequent MRI showed there was still residual cancer remaining. She was then admitted on February 8th for her "consolidation" phase of chemotherapy with an autologous stem cell transplant. This equated to 1 years worth of chemotherapy in 6 days.

Due to the residual cancer prior to transplant Kate then needed to undergo brain radiation. We temporarily moved to Houton, Texas for 2 months so Kate could undergo 31 treatments of proton beam radiation to the tumor bed.

Kate finished radiation on May 24th, 2010 which finished her treatment for the Head Start 3 Study. June 29th, exactly one year from her diagnosis, Kate had her first MRI post treatment which was inconclusive. She followed it with a PET scan one month later which showed no definitive signs of cancer! 13 months of prayers. And one scan showing no cancer!

Kate had another scan early September 2010 which again left us guessing. There was a new spot that appeared on the MRI. We are currently waiting for another MRI to see if this is merely treatment changes, vascular changes etc, or the return of cancer.

On February 1st, 2011 a routine MRI discovered that the brain cancer had indeed returned and metastasized. Options for treatment were few. And the prognosis was awful at best. Few ever survive its return. And yet.... we continue to pray for healing. 

Please continue to pray as we journey alongside our daughter.

Latest Journal Update

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It's been one month shy of 6 years. We have found ourselves occasionally dreaming back and wondering how different life would have looked without her diagnosis. And I can't help but not tear up and mourn some. I remember the vibrancy that filled everything she did, the energy and spunk that made her so delightfully her. And then the trauma we all felt after her CT scan finding a very aggressive cancer. Surgery 3 days later and the horror of seeing her unable to move her right side at all, and unable to speak. I remember begging to hear her say mom. Pleading that the look of fear in her eyes would be replaced. Wondering if it would still be my little Kate under the brokenness. I am not sure I will ever be able to explain the feelings and emotion that accompanied all that transpired that first month. The warm weather and her tanned skin takes me back momentarily to seeing her in that ICU bed, energy and mobility gone. And the spunk buried we didn't know how far beneath. 30%. It was the vague statistic we were given for her chances of surviving 5 years what they found to be a rare and aggressive cancer. Quality of life we were not sure. I struggled between hope and despair. And wouldn't allow myself to wonder much at all what 5 years would hold. One day was already more than plenty to digest. 

And here we are nearly 6 years. 4 years and 4 months from a metastasis. And 9 months from a second recurrence, third run with cancer. She did have the latest MRI in her normal calm and very calculated fashion. They once again explained if she moved it would extend the possibly 3 hour MRI and MRA. She knew. And despite a stomach ache, finished it in record time. She has always enjoyed a competition. And once again I simply can't explain scooping her out of that MRI machine to take her home and wait. Wait to hear what the next 2 months could look like. A quiet peace felt present. I have no doubt due mostly to those who quietly and fervently prayed on our families behalf, in the middle of the night and on to the break of dawn. 

Kate's MRI was stable... wonderfully so. From a medical standpoint it is the best we could ask for in terms of a scan right now. Brain cancer is complicated, horrifically so. I know people wonder why we can't stop chemo. Or why this doesn't mean it's over. Simply put, they, thankfully, can not see evidence of a tumor on Kate's MRI. They however, would not be able to see cancer cells on an MRI and therefore would not be able to say if there continues to be cancer present. And surgery alone for this type of cancer, especially a recurrence, has never proved curative. So she is stable. Which at this place, is simply awesome. We don't dwell in the statistical odds of her surviving this a third time. We simply can't, if we want to enjoy any time at all. So we shout thank you for 2 more months until her next MRI. And I'm practicing, even though some days its through gritted teeth, saying thanks for the countless things we give her on most days, pharmaceutical and alternative alike, to keep cancer quiet. I hate it, but realize it was almost impossible there would be anything at this point that would be of any benefit at all. Sometimes the miracle is still painful and tedious. But I think back to 6 years ago. And I marvel we get to hear her laugh. That she is as vibrant as she was. And that most days she baffles us with her outlook. Maybe that is even the greatest of miracles. That 6 years of obstacles, set backs and limitations could have cultivated any sort of kindness and generosity and gentleness in her. It has. And I'm awed. And won't forget to celebrate that amidst the endless treatments, transfusions, specialists and possibilities. 

We love the continued prayers. And would ask for them concerning new seizures (subtle but present), and other complications we are facing. And of course that cancer would once and for all be permanently removed from her body. And that amidst the treatments and horrid fatigue she'd be able to live. Not just survive. We are thankful for those of you who have poured into her these last 6 years. 
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Comments

408 Comments

Dan Cohen North Miami Beach FL danco1968@hotmail.com
By Dan Cohen, North Miami Beach, FL
You are always in my thoughts and prayers Kate. You are my hero and I love you!!! <3 <3
john & carol giovinco
By john & carol giovinco
Hi Precious Little Kate, Liv, Wil, Mommy & Daddy!!:) We are hoping you have a WONDERFUL 4th of July filled with lots of FUN!!!!:)....and GOD BLESS AMERICA!
Hugggggs~
Carol & John G.
xoxooxoxoxxoxoxo's Az.
Kimberly Bond
By Kimberly Bond
You have my prayers!
Connie Scheer-Foisy
By Your Canadian friend... Connie — last edited
Hi, Kate,
It's been forever since I have had any contact with you. I am very happy that things have taken the back seat and you can continue to be a kid. I pray it's behind you! I wanted to ask you what do you want to be when you grow up? I, like you have spent years in and out of the hospital and I think it's fair to say that it's the last place we want to be, however after 17 brain surgeries myself I am a second year nursing student. So maybe the hospital isn't such a bad place to be...well as long as we aren't the ones in the bed :). I don't know if you remember my daughter Daryl, she sent you the Olympic toy in 2010? She is now a nurse and looks after premature babies.
I hope you enjoy your summer, you have turned into a beautiful young lady. Stay strong and positive (you knew that)... Take care girl... hugs from Your Canadian Friend... Connie
ann toll
By ann toll
danielle condon
By
Dearest Kate,
You are truly an inspiration to everyone young and old. We pray that God lays his healing hands upon you and take this brutal cancer from you tiny body. I have been following your story for quite some time and I cry every time I read what your mommy writes. Such a wonderful spirit we see through the beautiful words your mom writes. Hold your head high baby girl, you can beat this and you have GOD on your side. I pray for healing and peace for your family. I have a 7 year old daughter whom is my world. We send all of our love and support and prayers to you all the way from TEXAS!!
Lots of Love,
Danielle and Kynlie
patti morrill
By Patti Morrill
Hi Kate, Sending love and prayers your way!!! XXOO
john & carol giovinco
By john & carol giovinco
Goooooood Morning PRECIOUS LITTLE KATE!!:) We hope you are having a good day and You, Wil, & Liv are enjoying your summer vacation!!!:) Sweetheart, you have touched our hearts in a very special way and will stay there FOREVER!!!:) Take care dear heart, and GOD BLESS You, Mommy, Daddy, Wil & Liv!!!
LOVE & PRAYERS~
Carol & John G.
xoxoxoxoxoxoxoxoxox's
Az.
Bridget DeMaio
By Bridget DeMaio
Continued prayers, a bit of "normal" in your lives and a lot of love being sent 💜.
DJ Herc
By Dale and John
Always praying for Kate and the whole family. Check my mail daily to see if there was an update.
Jesus hears our prayers.
Hugs to you Holly and to the whole family
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