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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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We sat waiting for Kate's appointment Wednesday with her oncologist. A man was singing Christmas carols in the waiting room. Children crammed into seats waiting for their appointment too. It was the day for neuro oncology clinic so most braved scars across their heads, some in wheelchairs others just waiting silently like my girl. There is something strikingly emotional about Christmas carols echoing off the walls of a room filled with kids with brain cancer. It's such a vicious, ugly disease. The songs rang with hope, while a room sat full of those desperate for it. Ourselves included. Brokenness. Broken hearts, broken dreams, broken hopes, broken bodies. Brokenness that was met with brokenness. Jesus met our brokenness with His own. He endured His, so ours wouldn't need be forever. It's all I could think all day. 

We anticipated handing out a few gifts along with gift cards that day, however little works on an exact time schedule on that floor. One sweet boy was awaiting being taken back for another brain surgery to fix a shunt that wasn't working. He battled leukemia to find it had returned in his brain. Another sweet young boy waited in his clinic room while his parents were taken to another with his Dr. I don't know why or what resulted. If only the gift cards and few toys that awaited them could alleviate what was discussed. Or what was ahead. But I'm so grateful a small package did await them telling them they were loved. Thank you. And a sweet little 3 year old girl also battling brain cancer was held up getting a much needed transfusion on another floor. Young and feisty I have heard, and in quite the battle for her life. So we left their gifts. Grateful you chose to recognize them with your donations. 

At Kate's appointment we discussed those things that have become common and shouldn't be. Side effects, lab draws, current lab work, MRI's, new medications, and future treatments. Kate's blood counts haven't held up as we anticipated, necessitating a platelet transfusion the last 2 weeks. So we are going to need to have her blood drawn weekly to see if she continues to need them while on this chemo regimen. The sluggishness likely from the longevity and severity of treatment. Her body simply slow to recover.  We have also unexpectedly had some hair loss. It wasn't likely with these specific drugs but again, neither was a relapse after this long. I choke up every time I go to brush her hair and see another knot. I know what it means, she has lost her hair twice before. It's coming out. She looks at me with those big blue eyes pleading for me to not let it come out again. I just say I'm sorry. So so sorry, as it comes right out in my hand. But she braves it like so many other things. And quietly comments that at least she has some hair this time. 

We did receive the results of some lab work we were waiting on. And it did show organ damage. Likely irreparable. It has been a difficult thing to bounce back from this week. So we are in discussions with her specialists and oncologist as to what needs to be done and when. It's a tricky thing to treat long term consequences of treatment meanwhile fighting cancer again. They don't seem to play well together. But it's just a dirty disease anyway. So we await additional testing and information to weigh and decide what to do and when. Broken with disappointment. 

So as the Christmas bustle goes on outside, we have remained mostly at home. Preparing the gift card boxes. Reading your sweet notes. And me, willing my mind not to race with the possibilities of what is ahead. And I find myself back at that place of brokenness. And reveling that Jesus met ours with His. So there will always be hope. It's just pointedly painful some seasons. Some very long seasons. 

Continue joining us in praying and pleading for our Kate. We are all weary for good news. Yet acknowledging that she is here, and that is quite good news for us. In 5 days we will celebrate her life. And the reality she has fought cancer now half of it. Thank you for recognizing her life and her battle by sending in gift cards for her to distribute. As I have said before, it has been an encouragement this very difficult month. We hope the other families feel the same. You have graciously and generously donated over $43,000 in gift cards thus far from over 40 states, to go to other families facing this fight. Thank you! 

Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer."


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Comments

231 Comments

Rita Julian
By Rita Julian
Continuing to pray for Kate and the entire family. I can feel the disappointment in your words and how broken your hearts are having to walk this path yet again. And yet, praise be to God, Jesus is walking the path with you, holding you up with his strength and loving you through this difficult time in your lives. Still asking for a miracle of healing for Kate. I pray Kate has a peaceful and joyful Christmas, feeling well enough to participate in this special day for our Savior, Jesus. God's blessings on all. In Christ Jesus,
Erik Newton
By Erik Newton
Constantly in my prayers!
robert kelly
By Rebecca
Blessings. So thankful that you know that Shepherd that walks with you through this valley. Keep on trusting His heart and cherishing your moments with sweet Kate. Praying that she can make some special birthday memories.
Susan Johnson
By
Merry Christmas to your family ! May much peace be upon all of you as we celebrate the birth of our " Prince of Peace" , Jesus.
Donna Johnson
By Donna
Prayers continuing for you all. Wishing you the Merritt Christmas possible. Love to you all
Shirley Forbes
By Shirley Forbes
Continue to pray for your sweet KATE,and all your family,and wisdom for the doctors.
Dan McBride
By Dan McBride
Holly,
Sweet KATE is in the loving care of JESUS❤️❤️❤️
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1 person hearted this
Jenny Sweitzer
By Jenny Sweitzer
The "rejoice" and "constant" parts are relatively easy compared to the "patient" part. All of use out here can and do join you in rejoicing and constant prayer, part of which is for patience and God's loving arms encircling Kate and your entire family with comfort while He works His miracles thru our girl and your family. No matter how hard I try, I cannot fathom what your family is going thru. Just know there are so many of us out here lifting you up for the healing God has in store.
beth hottle
By
You are on my heart and I pray continually for you. I know this is not heaven but I pray you get relief and joy.
L Villotta
By L Villotta
Dear Kate and Family: I have been reading for a long time. Praying often. As a childhood cancer survivor I remember those days of treatments and scans. I was 5 at the time. I an now 43 and have had a different form of cancer with a relapse 17 years later. I know the road well. Kate I wish you hope even in the darkest hours. Because of hope you will conquer and God will give you strength. I hope you know how much you are loved and cherished.