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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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Unpredictable. Maybe thats what the days are. Good days and those that are far less than desirable. The emotional pain has trumped the physical pain this month... of which I'm not sure one is worse. Her spirit willing and able to resume life as once was, her body less inclined to do so. The fatigue is still intense some days, which she hates because she feels like she is missing out on the world. But most days she concedes to the fact that fighting cancer requires sleep. Some days a lot. And seizure medications well they just make rest not an option. They are really quite horrible drugs. But in light of that, she has also not had a seizure in 3 months. Incredible considering there was a period of time we truly wondered if that would ever be possible. We love the reprieve the medication has brought, but hate the cost. So we have pushed to wean her off of them. And ever so slowly we are. And now even her neurologist is hopeful to eliminate one of the drugs in the next few months. If we are able, Im sure we will keep pushing after that. Pushing the boundaries of this disease. 

We are on the later half of this chemo cycle. Decreasing one drug has proved beneficial in keeping us out of the ER. She has continued to need platelets but not nearly as frequent. Her blood work has been difficult to follow this month. The pattern we thought would now be predictable, no longer so. So we get excited when we are pleasantly surprised and her blood work is better than anticipated. And we try not to sweat it when we have to go into the hospital on days like today, when we weren't expecting to need a transfusion. 

Kate asked me one day when she could start looking forward to getting off of chemo again. She wanted a goal. Something to aim for. I have thought about her treatment so much. Read and studied what I could. Asked questions until I couldn't possibly ask the same question a different way. And yet, somehow I had forgotten that this would seem the same to her as the two times before. A possible end date in the future. Hope of a countertop not covered in medications. And so I choked up, and she knew. No one has talked end dates. Or we have, but they mean years, not months. And many years not a few. I see her shoulders buckle and she says she needs time alone. I hate these realities. And yet for now they are. My heart breaks not being able to insulate her from this. She is old enough to ask the right questions, and seasoned enough to understand implications. But then later she walks out of her room. She isn't hateful, she is just hurt. She isn't really even angry, more just deeply disappointed. I marvel at her. She talks about if she would die, like most kids talk about their sports. She is no stranger to grief. She assures me she isn't scared. But she also isn't ready. She hopes Jesus will give her more time for living. 

And soon she's laughing. And I'm not sure if she's forgetting or simply still hoping. Or simply trusting. Or just living in today. Whatever it is. She is often the teacher and I'm the student. 

With having exhausted many of the traditional ways to treat this cancer, our Dr's are helping us add some other therapies to the mix. Kate's a champ at trying new things and just shrugs when I tell her we are adding something unusual. Her oncologist told us again today, this is the best time for us to try, when the disease isn't visible. When we are talking cells not tumors. And so our hearts hope. Hope against the statistics. Hope that she will get her day off chemo again. It may be a long time coming. But we can hope. And pray. And I'm reminded of the prayer we prayed from the first day we found out she had cancer, 5 years, 7 months and 19 days ago. It came from the story of Shadrach, Meshach and Abednego being thrown into the fiery furnace. Their reply to the imminent danger and death was that our God is able to deliver us, and He will deliver us... but even if He doesn't. And so we continue to pray to a God who is able to rescue our girl once and for all from this disease. And in the meantime we attempt to learn how to trust regardless. 


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Comentarios

349 Comentarios

Desmond Dodkins
By Des Dodkins Durban
God bless you dear little girl. I pray for you too Holly and your family.
elsa moore
By Elsa & Bill
Thank you sweet Kate for your beautiful card. I became teary eyed when I saw your beautiful face and kind words.
It is an honor to pray for you.
We love you and keep trusting God for a miracle.
Thank you Holly for the updates.
Karen Saino
By Karen saino
Thank you for the beautiful card and photo of Kate. The boys were so excited to get it and know that Kate read their letters. We continue to pray for Kate and your entire family. Please know that so many people are thinking of you all and asking God for Kate's complete healing.
Barb Thelen
By Brent and Barb Thelen
Praying for dear Kate...
for by Jesus' stripes, we pray and give thanks to God, that she is well and whole! God give you ALL peace and strength! :)
Deborah Burdzy
By Deborah (Debbie) Burdzy — last edited
May God's blessings and grace, His comfort and joy, His healing and restoring, rest on you and your sweet family. May His presence wrap itself around you and may the reality of Who He is and what He does be more real than real to you.
Brandy Wiese
By Brenda Wiese, Mandan, ND
I pray that God will heal Kate of this horrid disease. I pray for strength for Kate and your family while you await God's miracle. Thank you for the beautiful photo card of Kate that we received in today's mail. We will keep it always. God's blessings.
Marlene Venuti
By Marlene Venuti
Thinking of you today Kate. I hope you're having a good day. God bless you!
Sonya Jackson
By Sonya J
I will CHERISH the card I received today of cutest Kate and her pup. God Bless your family and as always my daily prayers are with Kate for COMPLETE HEALING IN JESUS NAME and the entire family.
john & carol giovinco
By john & carol giovinco
Good Morning PRECIOUS LITTLE Kate!!:) We hope you are having a GOOD WEEK and you keep your BEAUTIFUL smile everyday....We LUV U!!!!:):) GOD BLESS all!!!
BLESSINGS~
Carol & John G.
xoxoxoxoxxox's
Az.