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. At 5:30 I, Holly, Kate's mom, was taken into a room alone and told Kate had a massive tumor on the left temporal lobe of her brain. The world seemed to stopped for us that day. I called her dad and through sobs told him to come to the hospital quickly. Our long journey had begun. 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 were shattered. Dreams for our little 5 year old daughter put on hold to battle this monster. 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.
Please continue to pray as we journey alongside our daughter.
Feb 12, 2014 2:47pmI find it's harder to update as the days pass, a blessing as the urgency of things of the past few years has settled down into a different sort of routine. I like that. But it's also harder as Kate ages. Feeling a distinct motherly duty to protect what should remain private and yet still share that which is free to, for those who have chosen to join her story. Sometimes the line feels blurry so I sit quiet.
Many things small, yet huge have passed. Celebrations and disappointments. Realities wrestling with hope and progress. First Kate's MRI final report did come back clean. I will never tire of hearing those words. The years, the waiting and the treatments have aged us and yet those words serve to refresh. Kate was labeled as having a new allergy after the last MRI. She will now have to go on a regimine of being pre treated before and after any and all MRIs, in attempts to try and prevent the allergic reaction. We are obviously not in the place where we can just forego MRI's. Disappointing but nothing crucial. Her next MRI is already sneaking up just 4 weeks away.
It feels late and ineffective to merely just thank publicly those of you who contributed to the Christmas drive. But thanks I guess is all I have. You blessed us and the 30 families affected. You supplied thousands and thousands of dollars in gift cards to send out. We wept and rejoiced reading your letters and seeing your generosity. And for the first year I noted that a large portion of the donations actually came from those of you who whose journies have been hard, and many whose still are. It spoke volumes. Again thank you... It's a great joy to join with you in reaching out to these families.
So we continue to tackle the challenges faced with a neurological injury. Progress feels painfully slow if non existent and yet her Rehab Dr was very pleased with were we sit. Kate continues to be driven by her competitiveness. If told she can't do something at school she returns home determined to prove that kid otherwise. We hope one day to find the potential physical limitations as one of her greatest strengths. And rather than seeing cancer as a limiting factor hoping it will somehow provide boundless opportunity for her. It's one of my countless prayers for her life. So in the waiting for the answer I am ever so slowly learning to watch for His activity in the process.
Next month will be filled with 3 rather important specialist appointments. We cherish your prayers. But we just as much cherish your celebrations with us. I realized I missed the 3 year mark for Kate's relapse. Since it seems many of the events of the last years have revolved around those specific dates, I couldn't believe that I didn't recognize when February 1st hit. And yet I smile realizing she was too busy living. This Monday does mark a celebration, Kate's transplant birthday. 4 years ago she will have received her own stem cells back in attempts to give her a new chance at life. I hope I never forget to celebrate.
Thanks for loving her and praying for her, and us in turn.
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