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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

the long road

The longer the road becomes the harder it seems to express its challenges. Maybe its the threat of sounding repetitive. Suddenly the pains we see Kate endure, the torment of waiting for scans, the ache of watching her deal with disappointment they sound all the same, and I fear cheapen its reality. So quietly we walk through them at times. Because maybe words don't suffice. Or groans can't be articulated. And maybe at times I realize I'm distracted trying to explain or make sure others understand this disease's realities. And I'm not quietly tending to them myself. Doing the painful work of wrestling without answers. And the harder task of watching my daughter do the same. So at times I'm quiet on here, only because we are without words, or our own hearts need tending to, privately. Not because we aren't grateful for those who faithfully care for us and love our kids. No rather because I never want the telling of her story to distract me from the living of it. And the living of it right now is hard. Painful. And needs lots of tending to. 

Kate has been feeling quite a bit better this past week. We are so grateful to have a break from chemo before the next round and see her body strengthen some. Kate has actually seen considerably harder, or harsher, chemo in the past 5 years. But I think the chemo combined with figuring out the seizure meds, and just the reality that 10 years in her body has seen so very very much. It has made these rounds more difficult than we anticipated. But even more difficult might be when her body strengthens and her spirit hurts. In turn causing ours to bleed. So much to process at 10. 

I have never been more pained, and never been more grateful to see inside who Kate is. The last week conversations have been hard, broken and hopeful. I often wonder if it's God's mercy I am seeing, in seeing inside her heart. For surely it's not natural to when faced with the things she faces, worry most about those you love not yourself. To wonder if healing is saved for heaven how your family will bare the heartache. I can only see it as painful mercy to see inside her heart. And that God must be tending to her for her to feel so. And yet she still hopes that healing will be given plentifully here. And hours after she has fully contemplated death, she wonders about life. What it would be like to have kids and how big her belly would be if she would ever be pregnant. And somehow she lives between those tensions daily of wrestling with the idea of dying so young and the hope of living until she's old. But its evident in her heart there are desires deeply planted that will just never be satisfied here. She realizes greater things await. 

I find it hard to go out again. Hard to have these quiet conversations, to deal with things that cancer demands you deal with, and return to the public and talk about the weather. I once again feel strained to relate. Isolated by a disease we didn't choose. And yet in every unbareable hurt is the opportunity for God to speak, and for Him to tend to places that were often too full and had no room for Him.

In a previous appointment we decided with Kate's oncologist that her scans she be moved up. They needed to be done before the start of her third round. For any disease would negate her starting another round. So yesterday we went in for her MRI. We were all a tad more emotional and realized no matter how many times you have slipped your child into a machine to have their body scanned for cancer, well it just never feels ok. So in she went. As silent and still as always. No movements as she knows it only adds to the length of the scan if she blurs the images with movement. So she asks to be strapped down so if she falls asleep she doesn't accidentally move in her sleep. She thinks of everything. And then we wait. But thankfully her oncologist is sensitive to the intensity of the waiting and lets us go right to clinic and wait for her to get the preliminary results. And before we ever even see her face we hear her through the door saying "It's ok, the scans ok". No time to read her expression or size up her body language.

She's assuring us for today her scan looks ok and treatment is working, or God is healing. And we relish those words. 

So we take a deep breath and try not to fall apart. We whisper thanks for more time and beg God for mercy and courage to still face the days ahead. And we see if Kate is ok for another round of treatment. She concedes for one more for now. After that one we will ask again. So December 3rd she starts the third round of her homemade protocol. She is weary of it already. So we pray God will meet her there. Encourage her heart, strengthen her body, heal the disease, but mostly that He will speak to her and comfort her in the places even we can't. That she would feel Him as near as her breath. That she would know she is deeply loved and cared for by her Creator. That hope would never be lost. That that no matter the struggle she would never lose her knowledge that such wonderful reprieve is ahead, we simply don't know what lies in between here and there. 

So grateful for hope amidst the broken and in the in-between. 


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Comments

432 Comments

Lisa Embley
By Lisa Embley -- loving you from VA
Holly you write so beautifully. I feel every emotion I felt while my daughters soul mate fought cancer for 6 years. I started following sweet Kate's journey as Nicks was nearing the end. I have been praying for you and your family as well as sweet Kate. There is no doubt that the Holy Spirit fills Kate's heart and tends to her worries. You and your family are an amazing mixture of Faith, Hope and Love. I know God hears your every plea and knows His sweet Kate's concerns. His heart breaks alongside yours. I pray you and your family continue to feel Gods strength and love during this time. I pray for His wisdom in helping Kate defeat this ugliness that is cancer. I pray and hope you have a Blessed Thanksgiving.
Judith La Farnara
By Judith LaFarnara
May peace and strength be ever present .... mind, body, and spirit.
Eness Jarvis
By
Praying for you, Holly, that today and this week would be a break from the heaviness you carry. And of course, praying for Kate, for her healing and God's presence to be profoundly evident. May this thanksgiving be a special time of rest for you family. :)
john & carol giovinco
By john & carol giovinco
Good Morning PRECIOUS LITTLE KATE!:) We hope you are having a good week AND to wish you and your wonderful family a HAPPY THANKSGIVING......have lots of fun and enjoy your dinner Thurs!!!!:) GOD BLESS all!!!
LOTS of LOVE~
Carol & John G.
xoxoxoxoxoxoxoxoox's
Az.
Deb Fuller
By Deb
I am always moved by your writing. I think I am more moved because of my own short glimpse into this world. I'm glad Kate is sharing with you, our process moved so fast that when we did share it was through blinks and squeezes and I'm sad that you and she have had to have these conversations. Thank goodness for doctors who let us go to the clinic and wait because we most surely couldn't handle the torment of an extended wait. I am relieved that they were good. Most of all I am sorry. Sorry for her pain and for yours. I wish I could do something.
Marilyn Russell
By Marilyn - Tupelo, MS
Your words point all who read to go past our human emotion to that place of peace that only being hidden in Christ can bring. I join you in praying your last paragraph for your Kate knowing "that He who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us."
kim wagner
By Kim
Continued prayers from Pittsburgh may you have a blessed Thanksgiving.
Amy Heflin
By Amy in NC
still praying in NC for Kate and your family. God is still in control.
Mandie Maass
By Mandie Maass — last edited
I read this and experienced great hope. I believe Kate is being fully healed and that the glimpses of her heart are a gift from God reaffirming his promise that he sees the desires of our heart and grants them to us. Fully believing that "this too shall pass." In the meantime, I intercede on behalf of Kate and your family for his mercy and grace. <3 Your hands, a mother's hands, make a difference, the compassion and love that comes from them are unmatched. Your prayers, a mother's prayers make a difference, the depth of compasion and love in a mother's cries can be found in no other...than of course Jesus. He's the only one who knows her better and he is concerned, and he hears, and he is doing something about it.
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jim young
By jim young
Holly I shared Kate's update with our church tonite and they had me stand in for her and laid on hands and prayed like I've not seen our church pray in a while the HOLY SPIRIT ripped through the church I know I'm not worthy to stand in for our angel but there's a bunch of people in nc. Praying for your baby girl they also prayed for you and your family most of them heard her story for the first time tonite most were in tears some were overcome by the hurt the HOLY SPIRIT allowed them to feel just a little bit of what you all are going through one lady said she had been upset with her situation and said if kate. Could go through all of this she felt bad for the little things she was going through kate is touching so many lives tell her thank you for her spirit and faith she is a shining light for all of us
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