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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

MRI

When we found out Kate had relapsed for the second time we were no strangers to the implications it brought. An almost always fatal disease. Almost always. It's something we go to sleep to and wake to daily. Today we had 6 month scans since her relapse. It brought a tremendous amount of emotion. I couldn't hide the tears as she was prepped for her scan. The nurse quietly slipped me a box of kleenex. Today Aaron sat in the room with her during her scan and I waited rather impatiently in the waiting room. Putting the kleenex to use. We had talked even today, Kate and I, about if Jesus would take her home. Now the thought alone in the waiting room felt unbearable. And yet again and again I have had to relinquish control of that which I actually don't control anyway. My sweet middle girl. 

After finding out we would likely not get results until tomorrow we went for lunch. Tear stained and tired. And then I got a message...."call me". It took my breath. And we were all immediately concerned as to the reasons her oncologist was contacting us so quickly. I slipped out of the restaurant. Found a quiet place on the street. And told Jesus he would need to rescue us from the restaurant if the results were bad. Jesus help. Now please. 
"Hey" it's about all I could utter. "It's Holly". And then I closed my eyes and sat down. "It's fine. It's ok... They didn't see anything". She was calling to share the good news, not the devastating. We had more time. I ran in the restaurant and cried again. 

And so we celebrate the temporary relief. We hope for permanence to the healing. We long for it. Pray for it. And yet we wrestle to learn how to live in the in-between. With the wrestlings of brokenness. With the hope of eternity. Thank you for joining us in the wrestlings of prayer. We are grateful for your love and concern for Kate. She is worth the war on our knees. 

We follow up on Wednesday at the hospital to discuss the results, treatments and current side effects she is struggling with. For tonight we hold her close. And say thank you. 


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Comments

746 Comments

Kathie Aswegan
By Kathie Aswegan
Prayers for each day you have together. God must have a special plan for Kate.....
susan smith
By susan smith
Praying for sweet Kate....
Barb Thelen
By Brent and Barb Thelen
We continue to pray and thank God:
By Jesus' stripes, Kate is well and whole!
Benji Lalli
By Benji
Remembering you all today and always in prayers... holding you Forever in my heart ~
Kathy Winn
By Kathy Winn, Newton, IA
My prayers continue everyday for sweet Kate and the family.
Marjie Eubank
By Marjie Eubank
Kate is constantly on my mind and in my heart and in my prayers. Please, sweet Jesus, heal our precious child.
Dana Young
By Dana Young — last edited
Lifting Kate up in prayer at this moment... much love to you all. <3
Kimberly Wilcomb
By Kimberly Wilcomb
We continue to lift you all in prayer! Enjoy this news!
Cheri Spears
By
So thankful for the reprieve for you all. Kate's name is at the top of my prayer list and never far from my thoughts. Her brave journey and your gentle faith inspire me to live better, to love more and keep the small stuff in perspective. Thank you for sharing your daughter's story with us. <3 {{{hugs}}}
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1 person hearted this
Marlene Venuti
By Marlene Venuti
Happy Easter sweet Kate and family! God's blessing today and always!