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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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Tomorrow Kate finishes up her chemo for this round. Somehow it still seems unreal we are doing this again. Unreal some moments and very real others. Today Kate has been unusually tired. She has slept as long as she has been awake. She also has had some signs of a low platelet count and possibly red blood cells. So we are going in tomorrow to the hospital for lab work, instead of Wednesday. I am actually hoping she needs platelets and blood. It gives us a reason for the sluggishness and it can offer some pretty instant relief. 

It's been a hard few weeks. I am not sure as to all of the reasons, besides the obvious. But it's been exceptionally hard on our spirits. The third time around takes its toll no doubt. We also received a preliminary result back at her last specialist appointment that could indicate some organ damage from past chemo and radiation. It was definitely something that has added to the gloominess of the past week. We should receive all of the labs hopefully later this week and know for sure what is going on in this regard. I am pleading that it will not prove to be so, and that she will not need treatment for an additional thing. The 5 year mark has proved to be exceptionally hard for our girl. 

We have started home hospital for school as Kate has not been able to return as of yet. Some days if only due to fatigue. It's nice to have a teacher here for an hour a day. And yet on days like today that even feels like a stretch. Praying it will be the catalyst to keep her moving forward and be back in school one day. She misses her friends and the normalcy of school life. 

So the highlight of our day continues to be opening the mail. It has been medicine for us both. Thank you... We have already received over $25,000 in gift cards for the families. Thank you... it is a joy to allocate them to families that are facing similar heartache as us. I hope to share their stories as I receive permission. And tomorrow Kate will likely hand deliver a few of the packages at the hospital. Thank you for the opportunity and for the tangible support of her Christmas drive.  

Join us in continuing to pray for our girl. For fight. For quality of life. For life. Thank you... 
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Comments

207 Comments

Vicki Reiner
By Vicki in Brazil
Continuing prayers for you and yours. May God richly bless your Christmas celebration. I am asking our Father in heaven to hold you, the Holy Spirit to comfort and strengthen you, and Christ our LORD to graciously bring your stories, griefs, needs, and wants, to the Throne of God!
Jill Reinstadler
By Ken and Jill Reinstadler
We continue to pray for Kate and for your family every day. May the Christmas deliveries bring joy to Kate as well as all the families blessed by the gifts and the love that Kate exudes!
kk love
By kk love
Always Prayers for your Sweet Kate. She is very loved by so many of us that we actually feel a percentage of your pain. :(
Gift card sent and expect that package soon.... it's more then I thought it would be. I'll enclose a letter for Kate and from there, she's in charge of this dealie. I think she'll get a kick from it and hopefully it will charge her batteries! It's really "so cool"!
I love all of you and on Sunday, my birthday, I will put that package together.
I'd rather give then get. Makes me feel healthier and happier.
Gentle hugs,
Kim
Prayers and Blessings ALWAYS!!!
Carol Ann Dees
By Carol Ann Dees
Holly and Aaron,
Thank you for sharing your beautiful girl and this deeply personal struggle with the world. I believe that this decision has been an amazing act of discipleship. Your sweet girl has made huge waves in this world. Continued prayers for her healing and safety.

Love in Christ.
Carol Ann Dees
By Carol Ann Dees
Holly and Aaron,
Thank you for sharing your beautiful girl and this deeply personal struggle with the world. I believe that this decision has been an amazing act of discipleship. Your sweet girl has made huge waves in this world. Continued prayers for her healing and safety.

Love in Christ.
Kim Posley
By Kim Posley
Keeping Kate and the family in my prayers.
Nancy Brandenburg
By Nancy Brandenburg
Praying for Kate daily. May the Lord bless her with feel better days, and, bless you with less stressful days. May you continue to feel our prayers,and may God be with you all! Kate, and, your family, is a constant beacon of strength ,hope, and, the Lord's light shinning through! May the Lord bless you with a peaceful, Kate feels-better Christmas day! God bless you for the special people you are!
Karen Keen
By Karen Keen
An extraordinary and precious angel...Kate🙏
KELLY MILES
By KELLY MILES
Lynne Johnson
By Lynne and our therapy Collie, Lucky Boy
Darling Kate and all of you are in our constant prayers. We see her sweet smile looking through the mail and all the wonderful support you've received. We can see Kate now - with her beautiful eyes all aglow - passing out gifts. Our little Angel of Life. We pray for strength, hope and love and that each day is better for her than the day before. We pray for miracles. We hold you in our hearts and join our hands with yours for everything darling Kate needs.