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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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Another MRI has come and gone and all the many things that accompany it. We are so grateful, and physically relieved, that the final report came back with no visible tumor! She continues to be given another breath of life, even 10 months after this second recurrence. We cherish the time with our sweet girl and more opportunity with her. Words just don't do justice to the many things that go on in a parents heart and mind the days leading up to and after a scan. And the 60 days in between. I am not sure how you can experience the same things over and over again, nearly 44 MRI's later, the frustration, and relief, the pain and the wonder, and still not be able to articulate them. But somehow it continues to allude me. So silence often seems best as of late.

In many things, it's easy to jump to the conclusion and miss the thousand things in between. The hard wrestlings to get there. The journey of a thousand nights that preceded that unlikely and wonderful MRI. The miracle that overlooked the hundred hard days where you clawed to keep finding the will to not give up. To keep hoping. The desperate prayers to know whether you fight for the long term, or simply live to make that day memorable. When prognosis tells you to simply live today and hope tells you to fight in case you get the long tomorrows. It's hard to know. It may seem easy from the outside, in knowing how to proceed, let me assure you it is anything but easy, and anything but simple. So I thank those of you who have not jumped to the conclusions, yet rather have walked patiently with us in the wrestlings. Prayed with us in the waiting. And continue to hope with us in the hurting. That speaks to us profoundly. 

Now to our sweet girl. She is doing really well in things of the heart. She thrives really in those things. She hurts and wrestles with frustration on days, but is usually full of an enormous amount of grace and courage. She has determined to be a strong part of her medical decisions, and really most anything concerning her. If I start to talk quietly during an oncology visit she immediately pipes up that she can hear and reminds me, she is listening. So we invite her in to the most difficult of things. She has braved conversations that have buckled Aaron and I's knees, and she has found glimmers of hope and beauty amongst the ugliest of things. Even lately we had the difficult news of some confirmed organ damage. She pierces her most perfect lips, and through teary eyes says, "well I guess at least I have options". She hopes incessantly, and yet braves the hard when it does come. 

Kate started her 11th round of chemotherapy. That in itself is a weird celebration of finding something that has kept this awful disease quiet, and the simultaneous dread that it is 28 more days of chemotherapy. With an unknown amount ahead. No plan in the distant future, because there is no road map for this disease a third time. That intensifies the fight when there is no goal for end in sight. So we limit our view to the 2 months ahead, giving us a goal, and yet we hope and ask for that 2 months to become 20 years and another 20. 

In light of this weeks MRI, Kate has decided to go back to school at least part time. She is excited to try and regain some normalcy to her days. And for now she seems willing to bend and flex as we need between hospital appointments, intense fatigue, and continuing chemotherapy with her school day. I love her dogged determination. Please pray for her that she will flourish in that setting once again. It would be so good for her spirits. Last year she was out of school for all of 4th grade, and part way through the year started on the schools home hospital program. We are so thankful she gets the chance at another year and to tackle 5th grade. While many dread the start of a new school year, she anticipates that she gets that chance at life. 

Thank you for checking in on Kate, and being a part of what God is doing in her life. Her difficult yet beautiful story continues to be written. We celebrate her MRI and simply the joy of her life. We ask you continue to pray for our family and her specifically, for every one thing we share publicly, there is about one hundred things we simply keep close. So we cherish the continued prayers and love for her. We continue to hope not in our circumstance, but in a God that is very personal in the hard and for whom nothing is impossible. 












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Comments

432 Comments

Barb Thelen
By Brent and Barb Thelen
Isaiah 26:3-4Amplified Bible (AMP)

3 You will guard him and keep him in perfect and constant peace whose mind [both its inclination and its character] is stayed on You, because he commits himself to You, leans on You, and hopes confidently in You.
4 So trust in the Lord (commit yourself to Him, lean on Him, hope confidently in Him) forever; for the Lord God is an everlasting Rock [the Rock of Ages].
Colleen Jachcinski
By Colleen Jachcinski
Thinking of all of you today and everyday. Holding your entire family close in prayer. Hugs from Michigan <3
Theresa Meacham
By The Meacham Family in NJ
We have been following Kate's story since Day 1. My daughter is the same age as Kate. I have tried to put myself in your place many times, wondering how you find the strength to stay strong. I know God is the reason that you ALL stay strong. And I know that thousands and thousands of prayers, on behalf of your baby girl, reach His ears every day. She is an inspiration to many, as are you all. Please tell her that although we have never met, we love her very much. We love you all!
Bethany Lovegrove
By Bethany Lovegrove
Thank you so much for being willing to write and, even though impossible, to give us a glimpse of you, Aaron, and Kate and your struggles.
Go, Kate, go!!!! I'm so happy for you to go to 5th grade, and I will be praying much for your treatments to be easier and for God to give you extra strength and JOY!
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Paul and Darlene Bjornsgard
By Darlene Bjornsgard
We continue to pray...
May I say, you are an amazing family.
elaine wilson
By laney
...praying for you this night kate...and will be praying for you in the morning...and Jesus will be listening...He loves you so...blessings laney
Tracey Peters
By Tracey Peters
Prayers to you all daily, as we know and live the rollercoaster and emotional ride of this cancer journey. Our Dylan (we met in transplant when Kate was 5) Just had his 4th recurrence at age 22, the emotions and heartache that comes when watching the children and the parents that love them never subside, but FAITH remains. God Bless you all.
Bill Ingeneri
By
We Pray every day for Kate and your family....Blessings
Judi Williams
By Judy C
I'm so happy to hear how good She is doing thank you dear lord for all you have done and continue to do for this family.