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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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"Any man can sing in the day. When the cup is full, man draws inspiration from it. When wealth rolls in abundance around him, any man can praise the God who gives a plenteous harvest… The difficulty is for music to swell forth when no wind is stirring. It is easy to sing when we can read the notes by daylight; but he is skillful who sings when there is not a ray of light to read by—who sings from the heart… Lay me upon the bed of languishing, and how shall I then chant God's high praises, unless He Himself give me the song? No, it is not in man's power to sing when all is adverse, unless an altar-coal shall touch his lip… Then, since our Maker gives 'songs in the night,' let us wait upon Him for the music" – Charles Spurgeon

We were fortunate to be able to come home Friday after 11 days of an unexpected hospital stay. Home has been a reprieve from monitors, Iv's, scans and countless Drs visits. It regrettably has not been a reprieve from all things.

We find ourselves continuously torn. Anxious for answers and for progress on the seizures and seizure medications. And yet not knowing how many days of cancer reprieve we get, knowing these days are precious and to be fully lived. It's just fully lived has constituted moving between the bed and the couch. The adventure for the day is if a new Disney show is on that we actually haven't seen. And if we go a few hours feeling fully awake, and not hurting or feeling crummy somewhere. It hasn't been the things we have stored in our hearts to do together or how the days after her second recurrence would look. Go to Sea World and pet the dolphins again. Get back on a roller coaster. Go travel up the California coast. Go to Africa and get to know the kids in an orphanage that is dear to our hearts. Well and then there's Antarctica that she wants to visit, for the penguins of course. For now, she's been outside once since being home. And I realize how quickly the days from 3 months ago have gone. 

Monday we were concerned would find us back in the hospital. Kate started vomiting every 20 minutes for 2 1/2 hours. I could have set my watch by it. We emailed with our Dr's nervous this is what landed us in the ER last time, and began the sudden downward spiral for her. Kate is on chemo, but her oncologist is confident that is not what is causing the vomiting at this point in her chemo cycle. It is possibly one of the medications she is on, so we are slowly trying to come down on it. But again, answers seem to evade us. 

We were fortunate to be able to stay out of the ER. But have since started what they believe are self resolving, small seizures again. It's maddening. We struggle to know what to treat and what to just play out. Sometimes the treatment seems as bad if not worse than the event. So I write it all down, hoping soon we will see something that gives us insight. 

Today we are going back to the hospital to have labs drawn, meet with her oncologist and to determine if she will need a platelet transfusion today. 

So home has been welcoming, yet also an exhausting amount of watching. There is little I accomplish each day. And yet somehow I feel the quiet, painstaking hours could be some of life's most important. The tears and frustrations no one knows and no one sees. The ones only Jesus himself can attend to. And maybe living life fully is less about what we accomplish and experience and more about choosing to live where we are. Even in the barren wastelands of cancer we have no choice about. Even when the barer of the ugly is the most precious of 10 year old girls. And even when they have bravely walked it already 2 times before. It feels grossly unfair. And it is. And so are many other things this broken world has seen. And yet somehow I pray we will be able to live just where we are. And simultaneously we hope that Kate's best days on earth await her. 


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Comentarios

412 Comentarios

Collette Beagin
By
Wow, such strength and love exists in your family for sure. You all continue to be in my thoughts and prayers with hope for a cancer free future for you all very soon...
Anita Hodge
By Anita
Praying for healing and answers. Praying for God to wrap His arms around all of yall and give yall strength and comfort. Anita in VA
Karen Hagan
By Karen
Prayers going up from Iowa
Rhonda Ramsey
By Rhonda
I had not checked on Kate in quite some time. What a spunky and courageous girl she is. I've cried and smiled as I read your updates Hollie. I pray specifically for peace and clarity for you all and the doctor's treating/healing her. Prayers from Virginia.
Nancy Stephens
By nanc
Hollie I just checked in for any updates. I'll check the FB page as well.. prayers continue!!! Love and Hugs from WV!
john & carol giovinco
By john & carol giovinco
Good Morning PRECIOUS LITTLE KATE!!:) We hope you are feeling a little better and the vomiting has stopped. Stay STRONG little one and we will keep the PRAYERS coming for you, Sweetheart. GOD BLESS all!
Lots of LOVE~
Carol & John G.
xoxoxooxooxo's
Az.
Kathy Winn
By Kathy Winn, Newton, IA
I continue my prayers for all of you especially Kate. Inner peace and strength for Kate and family. My heart is breaking for you.
Sarah Longoria
By Sarah Longoria
Not a day goes by that I don't think of you and pray. My Emma is 10 and to watch you walk this road with Kate breaks my heart... But it also fills my heart to overflowing as I witness they way God is carrying you and shining his light through you even in your darkest days. It is so clear to me that this is not our home, that the best is yet to come, that to live is Christ and to die is gain. Continuing to pray for your hearts to be filled and upheld even as you walk through unthinkable pain.
Lori Aragon
By Lori Aragon
Holly, indeed you are accomplishing MUCH MORE than you know <3 <3 <3
Lifting up your family to JESUS... He knows, He sees...
Buckets and Buckets of love!!!
Tim Page
By Tim Page @tgwpage
Thinking of you all from Belfast.

It sounds so hard.

Praying with you now that you will indeed be able to live just where you are.
And for rest, not restlessness.
And for Kate's healing.

I had a stem cell transplant last year, tonight found comfort in some quotes... Lengthy I know.
https://www.goodreads.com/author/quotes/19982.Frederick_Buechner

Thank you for telling it as it is.

Tim x