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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

406 Comments

Vicki Reiner
By Vicki in Brazil
I am praying God give your family days of vibrant health and lightheartedness to offset the heaviness that seems ever present. God is our hope through it all.
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1 person hearted this
Erin Villani
By Erin
I see Jesus in Kate with every posting of yours, with every word of Kate's. You have touched my families hearts and our faith in ways I can't even explain. We pray for Kate with every meal together. She is a blessing to us and to God. Thank you always for your open honest heart.
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2 people hearted this
Kate Patton
By Kate Patton
We continue to lift up your amazing Kate, we Kates are strong and resilient, thanking the Lord for the gift of 6 years, amidst the troubles! He is SOVEREIGN and will continue to carry you all through this journey! Hugs and prayers!
Janice Nebgen
By Janice Nebgen
Praising God for the little yet giant steps. God bless you little one with your heart of a warrior to fight. God bless your parents, family and friends. May your heart be filled with peace and comfort that come from the Lord. Continued prayers. In Jesus mighty name. amen.
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1 person hearted this
john & carol giovinco
By john & carol giovinco
Goooooooood Morning PRECIOUS LITTLE KATE!!:) We are just checking to say "Hi" and send lots of LOVE & tons of PRAYERS, Sweetheart!!!!:) Take care and GOD BLESS all!
Huggggggggggggggs~
Carol & John G.
Az.
Diane Jendresen
By Diane J
Praying for you and your precious Kate today.
Jill Schwieger
By Jill Schwieger
Sweet Kate and Sweet Holly.....I just now read your good news, and it's brought joy to my heart once again! There have been so many times over the past 6 years that your journal has shared your joy with so many of your friends here! Even when you were going through some of your hardest days, you let us know that you were trusting Jesus, and that you knew He was walking with you through ALL of your days.....the good ones and the bad.

As a Mom/Grandma/Great-grandma, I've come to love you and your dear family. And, Kate, I shall continue to pour out my heart to God for your total healing and restoration, from the top of your beautiful head to the tips of your sweet, dancing toes. I rejoice with you in these good days.....blessings.....Jill from St Louis
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Raewyn Murray
By Raewyn Murray
6 years. I think of you often and each time I open to read a new piece of your journal hope good news will appear. Sending my best wishes to you all.
Laura Jungeblut
By Laura Jungeblut
Kate has been and will forever be in my prayers. These six years are simply a God given miracle. She is His Story. xo
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2 people hearted this
shelly sibold
By shelly sibold
We continue to keep your precious sweet Kate and your beautiful family close in our thoughts and prayers. You continue to inspire me...your strength and heart! Blessings.