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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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Kate continues to remain on less medication, which has further allowed for us to see just how medicated she was before. She could barely hold her head up some days after it would all take effect. The color would drain from her face and she'd shake her head trying to wake herself from it's horrible grasp. We continue to remain thankful that the right specialist, the time inpatient, more accurate diagnosing, and God's clear guidance allowed for her to be taken off two of those heavy hitters with no repercussions. Just more life. And she has continued to have no signs or symptoms of seizures. This is no small thing. I had no idea what families suffered as they struggled with these. The never knowing, and days constantly and unexpectedly interrupted. The ambulance rides. And the thick frustration of not knowing what was what. So to have reprieve from them feels a huge sort of victory, a freedom. We are not naive to the reality that they could reappear at any time. But I treasure the time not dictated by them. 

Kate is finishing up her 17th round of chemo. That just sounds like 17 too many honestly. It has been incredibly hard. But it's been hard together, with her. Not in the present absence of her. And I think of mamas for whom cancer has caused absence. Unimaginable grief. And I beg God to not allow the pain to cause me to miss her being present. That I don't get so busy in the managing of disease that I am not present for the journey of hard. 

With the relapse came the canceling of her orthopedic surgery. Any urgency to strengthen her right leg paled in comparison to the realities recurrent cancer brought. And we never went back. The last few months we were urged to return, and reevaluate our situation, as we are constantly in the business of doing. Conscientiously, the surgeon listened to us review the last year and nearly half. I saw him look at Kate so gently and wondered if it was the ache of a father I saw in his eyes. He gently told us it wasn't time for us to pursue the surgery yet, as she had presently quite enough on her plate. But he would be there for us, if and when the time was right. I think we all felt the real struggle, knowing she was in uncharted waters. So it is hard for anyone to estimate what the days ahead might hold. But we were collectively relieved that for now it wasn't another surgery. Instead we decided we need to plan a vacation. I'll take that any day. 

SO the Christmas drive. I just can't say thank you enough. In a journey that feels full of loss it is one of those things that feels like life being breathed into the barren. Thank you for making it happen. And your willingness to enable Kate to pursue what her heart feels deeply. You collectively sent in over $95,000! Yes. $95,000 in gift cards and online donations. All of which will continue to go to other families facing the new and daunting reality of pediatric brain cancer, or the painful in-betweens of fighting for life amidst it, and for some the end of life heartaches. We sent them out to various states, and many here locally. Locally, we had the privilege of working with a social worker who enabled us to find countless families whose story few knew. Who suffered in silence and deep financial need. Who often rode busses to oncology appointments and struggled with various basic needs. One story I couldn't shake. One single mom had experienced far too much hard. And now to watch her girl suffer brain cancer. The broken places can harden. The pain be misinterpreted. She, I'm sure, is often misinterpreted. With the gift came tears that no one had seen previously. And the confession that no one, in her life, had ever done anything like this for her. Lot's of years of hard living. And no one. It was like someone finally saw her, even if it was a young girl, facing hard of her own. Someone saw her humanness. And that met our own ache. It's not just the financial gift you gave. Many days it was the gift of acknowledging they were seen. Not overlooked. It so often can be such an ugly journey....tears more than my heart can handle many days. Thank you for bringing beauty to the barren. And because of the generosity we will continue to send out packages this winter and spring. A surprise for those fighting. Or maybe just a small, momentary reprieve. Again, we are so thankful that you would do this alongside our girl. 
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Comentarios

197 Comentarios

Monica Peeke
By Monica Peeke
tears reading this update...too many thoughts going through my mind to post anything that makes sense, but thank you for sharing your heart.
Praying for Kate, and your family as you endure so many challenges and heartache.
David Gallagher
By David Gallagher
Praying for each of you!
Janet Coates
By Janet Coates
Still praying for all of you and so many times you just come to my mind throughout the day, I'm sure for prayers. It's just so hard to understand and the fact that you stay faithful during such difficult situations - it just amazes me! You all are truly our heroes here in NC as I'm sure all over.
Linda Tocheny
By
I'm so happy to read your update. Will continue to pray for Kate & your family.
Evelyn Krache Morris
By Evelyn Krache Morris
We are delighted to be able to help. Childhood cancer has been a brutal journey for our family, and we don't suffer the financial hardships that so many others face. Praying for you and your Kate.
Dee Kannon
By Dee Kannon
Prayers and thank you for blessing so many 🙏❤️
Lori Varga
By Lori Varga
Such a rad praise report of the Christmas drive and the reprieve you are all getting from heavy meds and seizures. Praying the Lord continues to sustain each one of you in the exact way you uniquely need it. You are all amazing and we are so humbled to be on this journey with you.
Catherine Clugston
By Cathy
Still praying for a miracle. Thanks for sharing. You are a blessing.
karen eager
By karen eager
you do not know me but I heard about you from the beginning of your journey through my sister in law. I hve been keeping up on updates always praying especially when kate and your names come to mind. I personally have never been close to anyone one with cancer except church peoples names but I read up on childrens cancers and love children. my heart does break but at the same time I rejoice that God has allowed kate so much klife during this deal and her heart of loving God and wanting to love and help others. I thank God for kids like her who realy have a great sense of helping others. I have medical issues of dep[ression and anxiety ans aspergers but nothing can make me feel so good as to being able to be part of your prayer support thankyou for your blessins in my life you have shown over the years . may God continually bless you and lift you up day by day and moment by moment . please remember you are always being thought of up here in Alaska and will not stop. you are all on my mind constantly especially when I go through rough waters cause I can think and pray for you all and remember you have a tougher time than I and need Gods special hand contantly. may God bless you all . I hope I made since I don't write to well on feelings
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Rita Julian
By Rita Julian
Continuing to pray for God's wisdom, comfort, healing and love in the midst of this hard, very hard journey for Kate and your family. God bless you all in Christ Jesus.