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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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I have tried to post many times. 5 to be exact. And yet every time I shut the computer, the words simply not able to express the realities. So I would try again another day only to find more of the same. I could simply not articulate the gratitude and anguish that seemed to wrestle in my soul daily. So I stayed quiet. I apologize if some of you interpreted it as a poor scan result. It was simply a mother unable to express everything her heart was experiencing. And likely today will be the same, but I felt I should say something regardless.

Almost two weeks ago, Kate underwent a CT scan and then the MRI of her brain. She was collected and calm while there, if not slightly annoyed at the number of MRI's she has had. She took her IV without flinching and carefully instructed the technician how she likes to be in the scanner. No goggles, simply the headphones inside the head encasement. With Taylor Swift on play. She adds that she likes to be strapped to the table, to ensure she doesn't move. He did, but she needed it a little tighter. Any movements she knows ensures a longer scan. So she is going to ensure she doesn't move. And she didn't. No surprise there. I could even see her smiling as she layed in the machine. I'm not sure if it was because the IV went so smoothly or because of the song that was playing. Either way. I'll take her smile. And her not thinking about what they were scanning for, more cancer.

Kate's oncologist called us the next day, knowing we preferred to hear the results by phone either way, as opposed to waiting another day for our oncology appointment. She is gracious in that. She called and as usual spilled the results before any platitudes. The scan was stable, nothing evidenced as cancer. Oh thank you Jesus! More time. More time. But also more decisions. But for the moment our hearts just relished in the more time. We had been prepared, or maybe warned,  in previous appointments for anything this scan. It's an ugly disease. So all I could say most of the day was thank you Jesus. It is prayer and praise both some days.

The next day we found ourselves back at the hospital for a blood transfusion and to discuss our treatment options. Or lack thereof. It's complicated. Obviously. But we have discussed the risks and benefits of everything, many times. I have beat it into the ground, somehow thinking maybe it would present a different result or one I liked more, or disliked less. The reality is risk is present in anything we decide. Alternative, traditional, targeted. Whether its lack of research, lack of studies, risk to organs, whichever, everything necessitates a choice. But as she comfortingly put it, you have a choice, but you really have had few choices in all of this. Somehow it eased the burden so slightly. So we chose to continue at a reduced rate of a drug for a couple weeks and see how Kate's body tolerates it. We have home health coming and drawing her labs twice a week, and we have twice weekly infusions scheduled at the hospital in case her labs necessitate a transfusion. If we are needing emergent transfusions or simply too many for Kates liking and find her body unable to tolerate, a change will be made soon. But her medical team is not quick to want to see her change treatment in light of the recent scan. Because she's here. Here after relapsing the first time almost 4 years ago when we thought we could have so little time. And here almost 5 months after her second relapse. Needless to say they would like to stay the current course. 

We also received the news that we have some time before we need to treat the current organ damage. That day will come, however, it is not today. Another momentary relief. But isn't that what most things are.... momentary. It's a difficult space to live in. Little planning for days ahead, much deciding for things that are not without great risk, grieving over her suffering and the unique ways it manifests itself, but hoping and rejoicing in God's faithfulness and love for and to her. And relishing the reality that His grace and provision will be new each day. 

One of the sweet pleasures recently was watching Kate express her desire to help other kids fighting this disease and having you all come alongside her yet again to do so. Profoundly this year. You graciously donated around $52,000 for her to distribute to other families fighting pediatric brain cancer. Thank you! Many of the families we became acquainted with through social workers. Some had trouble with gas costs going back and forth to the hospital. Some lived in conditions not near ideal while being immune compromised. And others received harrowing prognoses, while two little ones ended their battles with cancer right near Christmas. It was a small gesture in light of their need and heartbreak. But, love speaks. So thank you for loving them with your gifts. We are grateful. Because of the tremendous response we are actually going to be using some of the gift cards for packages for the month of February to send to other families fighting the same disease. They will be smaller amounts than for the Christmas drive, but we are going to send packages with around $300-$500 of gift cards reminding them they are loved. I know some of you would like to let us know about families you are aware of fighting pediatric brain cancer. If so, please email me at kateschristmas@gmail.come with their information. And if anyone would like to donate small photo boxes (such as are used by professional photographers) to package the gift cards in please let me know. Thank you! 

Thanks for celebrating Kate with us. For saying thanks with us. And for continuing to pray alongside us. 
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Comentarios

272 Comentarios

Jill Schwieger
By Jill Schwieger
Kate! In your picture for today you look like a beautiful statue from ancient Greece......draped in your flowing toga, with your hair swept up to frame your classically beautiful face and elegant smile. I love it!
Also, I wanted to remind you that I continue to pray for you, asking God for total healing and restoration (meaning "Good-as-New") from the top of your beautiful head to the tips of your sweet dancing toes! And sending you love and gentle hugs from Jill in St Louis.......
Sue Crabb
By Sue Crabb
Kate you have always been one beautiful little girl inside and out. It is hard to believe you are 11 years old already. God has a plan and it shows every day with who you are by helping others, drawing strangers together to come to know you but of the pain and happiness of others. Thank you for being who you are and for letting me be a part of your life.
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Victoria Vonthien
By Victoria in Australia
Am so happy to read of more good news in the way of stable results. Happy birthday for last week Miss Kate. 11? Wow!!! :-)
Always in my thoughts and prayers. Sending you hugs and positive energy to continue on xoxo
Lyn Kelly
By Lyn Kelly
God Bless you all.
drema pearson
By drema pearson
Kate is so beautiful and I hate all she has had to endure and hope that all the prayers sent to God for her healing comes soon.
j savage
By Janel
Kate is a stunner! Such a beauty.... I am so happy to hear that more prayer has been met....I will continue to pray alongside y'all....
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1 person hearted this
Janice Rowlands
By Janice Rowlands
Praying for Kate and your family. Rejoicing in the moments.
Joyce Nosker
By Joyce Nosker
So very thankful for the blessing of the great MRI result.

Praying for continuing treatment and any side effects from these medications.
Sally Nordenstrom
By Sally Nordenstrom, DeForest, WI
Have been anxiously awaiting an update and praying for all of you. Holly, your neverending strength never ceases to amaze me. Keep up the good fight beautiful girl!!
Ellen Young
By Ellen Young
Praying for Kate, and for all of you. My heart aches when I think of what you all endure. God bless you.